TTC or pregnancy on prednisolone or similar part 9

(999 Posts)
sarahs999 Fri 31-Aug-12 06:24:33
sarahs999 Fri 31-Aug-12 06:28:13

And here's the list updated (can you tell I've got insomnia again?!)

The babies are arriving!

Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (EMCS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 – 39 weeks (CS) 14/5/12 7lbs.
Igggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy Thomas born (CS) at 38+6 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 40+0 - baby girl Amelia born 7/06/12 (CS) 7lbs
Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle), Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 - Baby boy Sebastian (ELCS) at 39 weeks 17/07/12 8.11 lbs.
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 40+1 wks EDD 24/07/12 Baby boy born 26th July, 7lbs 5. EMCS
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 38+4

BFP 3rd Trimester

coleyoz - V High NKC. DC#2, BFP cycle2, 41+1
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 37+0
Mercator - V High NKC, DC#2 36+2 (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks) ELCS 14/09/12
Hopefulfor2nd - High NKC - TTC#2. – 35+5
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 35+5
PQ77 - TTC #2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) 31+5

2nd Trimester

HelterSkelter (IVF and immune therapy) -21+3
Suemays - TTC#2. DD, followed by 6mcs all 6-8 weeks. V High NKC. Superov but this BFP a natural one. (Pred & Hydroxychloroquine) 19+0
Bertha337 - High NKC, 1 ectopic, 2 mcs, est 15+0
GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, Pred from BFP. 14+6 Next scan 5th October
Delta10 - High VNKC, 5 mcs followed by DS Pred baby, 1 further mc. Est 14+6

1st Trimester

sarahs999 - DC1 followed by 5 mcs, high NKC (Pred), plus clexane twice daily for Factor V Leiden and Prothrombin, aspirin, cyclogest, intralipids. 12+3
Jemimapuddleduk (33). 3 prev mc's over last 2.5 years between 7-11. Not tested for NK but prescribed 20mg pred, fragmin, asprin and cyclogest on NHS. 11+3
HavingKittens, 4mcs, 2 TOP TS21, 7th pg, 5th SO Cycle, VHNKC, 40mg Pred, Hydroxy, Intralipids, etc. 7+6, next scan 4 Oct.

BFPs awaiting first scans

Hannah77 - DD born 2003, 3 losses 21 wks, 17wks, 7wks. BFP 25th July.

TTC – ASSISTANCE - TTC 2ND or more

Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
Abney (44), TTC#2, SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),- super ov
Arianrhod - TTC#2 DD then 5 mcs 5-9 wks (2 on treatment), V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine) – super ov
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2 on Hydroxy, -super ov
LJ71 - two older DCs, mc on treatment. SO, pred, hydroxy

TTC – UNASSISTED - TTC 2ND or more

Iloveblue - under Prof Quenby for HNKC. 2 healthy boys, followed by 20 week loss, 2 early mcs, 15 week loss.
Willitbe - TTC#4 DS, DD, 1 mc, DS2, followed by 11mcs, (5-11 weeks). NKC not tested, TTC #4 (after m/c 12) Fertility cons prescribed pred.
Holldoll - TTC #2 High NKC - Pred, Cyclogest & aspirin. DS followed by 4 mcs, heart stopped around 5-6wk. Mc in March 2012 on treatment. Pred started at BFP.
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)

TTC – ASSISTANCE - TTC 1st

Havingkittens - TTC#1 4mcs between 6-8 weeks, 2 Downs. Upgraded from High to V High NKC -12 pred replaced with Hydroxy 10/7/12 – 5th cycle SO
Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, 2nd chemical on treatment/IVF - SO
duggs1976 - TTC#1 -4 mcs all 7-12 weeks. - TTC #1 – last chemical on treatment/IVF in April. SO
BellyD - V High NKC, MTHFR homo, TTC#1, 5mcs, SO, hydroxychloroquine
Carebear1 - V high NKC

TTC – UNASSISTED - TTC 1st

ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April - mc on treatment.
EchoJuliet, awaiting diagnosis, Preg 1 -MC 10 weeks (heartbeat stopped at 6w), mc 20w, mc at 8 weeks (heartbeat stopped at 6.5w)eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of IUI No BFP in 20+ cycles of trying
London - High NKC, April - mc on treatment.
picolina - TTC#1 4 mcs, all around 6 weeks. V High NKC MC on treatment
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
Gransol - Seven mcs - all losses between 6 & 7 weeks
Mollieboo - 5 early mcs between 4 & 10 weeks, 1 premature birth (lost my little angel), high NKC - pred, intralipids, aspirin, clexane, cyclogest

GreenOlives Fri 31-Aug-12 08:10:03

Phew, found you! Thanks Sarah for starting the new thread. I just noticed this morning that the old one was full and I have no idea how to make a new thread so I came searching hoping that someone had done it already wink

Hope the weaning is going ok for you. I am impatiently awaiting the arrival of the doppler I ordered on Tues. I had a sudden wobble as I have no scan until 20 weeks now and that seems like such a long time! Just hope I can find the HB ok confused

Waves to everyone.

PQ77 Fri 31-Aug-12 09:17:18

Thanks Sarah, just marking my place.

sarahs999 Fri 31-Aug-12 09:22:03

Hooray olives you found it! I did wonder if I was going to have a lonely six months with a thread to myself smile.

It must be really anxiety inducing when the scans start to dry up but at least you should feel some movements soon. That's always fun.

The weaning is going ok though I've only done three days on 20mg so far. Today's the first day on 15mg. I had a mild headache last night but nothing too terrible. Must admit to stressing slightly about why it's now ok not to be on prednisolone - I know that the placenta is now developed etc but what stops the nkcs attacking everything again? Anyone who can eighteen me, id be very grateful!

sarahs999 Fri 31-Aug-12 09:22:47

Christ, bloody iPhone. Enlighten, not eighteen.

mollieboo Fri 31-Aug-12 11:31:29

Hi everyone, haven't posted for a while. Been keeping up with the news though and am really pleased that there's a lot of good news on here at the moment.

I'm now on 3rd month ttc on pred and hoping this month is the month! With all of my 5 miscarriages, I got pregnant first time, so read with interest about the "unfussy womb" theory, can't help wondering if that's me. When I got pregnant with my son, it took 3 months of trying so maybe there is something in the theory. Have been diagnosed with high NK cells too though so maybe I should just worry about one thing at a time!

I've updated the list as I was under "ttc unassisted 1st". Its complicated with me as I lost my son when he was 5 months old but I'll put myself under "ttc unassisted 2nd or more".

I think I've messed up my last two cycles by taking pred before I ovulated as I was panicking that the opks didn't work, but they did then show a positive after I started the steroids so I hope it didn't mess anything up. I've now bought a thermometer to start charting so that I can definitely see when I've ovulated. Has anyone done the bbt thing and did it help?

I totally understand what all you pregnant ladies are going through. I already can't imagine the worry I'll feel when I get pregnant next time. But hearing of all the babies being born on here does help. I found out last week that a man in my office and his wife just had a baby boy under Mr Shehata's plan, love hearing the positive stories.

The babies are arriving!
Friday 31 August 2012

Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (EMCS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 – 39 weeks (CS) 14/5/12 7lbs.
Igggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy Thomas born (CS) at 38+6 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 40+0 - baby girl Amelia born 7/06/12 (CS) 7lbs
Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle), Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 - Baby boy Sebastian (ELCS) at 39 weeks 17/07/12 8.11 lbs.
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 40+1 wks EDD 24/07/12 Baby boy born 26th July, 7lbs 5. EMCS
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 38+4

BFP 3rd Trimester

coleyoz - V High NKC. DC#2, BFP cycle2, 41+1
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 37+0
Mercator - V High NKC, DC#2 36+2 (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks) ELCS 14/09/12
Hopefulfor2nd - High NKC - TTC#2. – 35+5
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 35+5
PQ77 - TTC #2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) 31+5

2nd Trimester

HelterSkelter (IVF and immune therapy) -21+3
Suemays - TTC#2. DD, followed by 6mcs all 6-8 weeks. V High NKC. Superov but this BFP a natural one. (Pred & Hydroxychloroquine) 19+0
Bertha337 - High NKC, 1 ectopic, 2 mcs, est 15+0
GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, Pred from BFP. 14+6 Next scan 5th October
Delta10 - High VNKC, 5 mcs followed by DS Pred baby, 1 further mc. Est 14+6

1st Trimester

sarahs999 - DC1 followed by 5 mcs, high NKC (Pred), plus clexane twice daily for Factor V Leiden and Prothrombin, aspirin, cyclogest, intralipids. 12+3
Jemimapuddleduk (33). 3 prev mc's over last 2.5 years between 7-11. Not tested for NK but prescribed 20mg pred, fragmin, asprin and cyclogest on NHS. 11+3
HavingKittens, 4mcs, 2 TOP TS21, 7th pg, 5th SO Cycle, VHNKC, 40mg Pred, Hydroxy, Intralipids, etc. 7+6, next scan 4 Oct.

BFPs awaiting first scans

Hannah77 - DD born 2003, 3 losses 21 wks, 17wks, 7wks. BFP 25th July.

TTC – ASSISTANCE - TTC 2ND or more

Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
Abney (44), TTC#2, SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),- super ov
Arianrhod - TTC#2 DD then 5 mcs 5-9 wks (2 on treatment), V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine) – super ov
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2 on Hydroxy, -super ov
LJ71 - two older DCs, mc on treatment. SO, pred, hydroxy

TTC – UNASSISTED - TTC 2ND or more

Iloveblue - under Prof Quenby for HNKC. 2 healthy boys, followed by 20 week loss, 2 early mcs, 15 week loss.
Willitbe - TTC#4 DS, DD, 1 mc, DS2, followed by 11mcs, (5-11 weeks). NKC not tested, TTC #4 (after m/c 12) Fertility cons prescribed pred.
Holldoll - TTC #2 High NKC - Pred, Cyclogest & aspirin. DS followed by 4 mcs, heart stopped around 5-6wk. Mc in March 2012 on treatment. Pred started at BFP.
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Mollieboo - 5 mcs, 1 DS (lost my little angel), high NKC - pred, intralipids, aspirin, clexane, cyclogest

TTC – ASSISTANCE - TTC 1st

Havingkittens - TTC#1 4mcs between 6-8 weeks, 2 Downs. Upgraded from High to V High NKC -12 pred replaced with Hydroxy 10/7/12 – 5th cycle SO
Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, 2nd chemical on treatment/IVF - SO
duggs1976 - TTC#1 -4 mcs all 7-12 weeks. - TTC #1 – last chemical on treatment/IVF in April. SO
BellyD - V High NKC, MTHFR homo, TTC#1, 5mcs, SO, hydroxychloroquine
Carebear1 - V high NKC

TTC – UNASSISTED - TTC 1st

ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April - mc on treatment.
EchoJuliet, awaiting diagnosis, Preg 1 -MC 10 weeks (heartbeat stopped at 6w), mc 20w, mc at 8 weeks (heartbeat stopped at 6.5w)eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of IUI No BFP in 20+ cycles of trying
London - High NKC, April - mc on treatment.
picolina - TTC#1 4 mcs, all around 6 weeks. V High NKC MC on treatment
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
Gransol - Seven mcs - all losses between 6 & 7 weeks

sarahs999 Fri 31-Aug-12 11:45:11

Hi Mollie, good to hear from you. Sorry you were in the wrong spot - they were rejigged a little while ago and I think a few people may have got into the wrong spot.

I've charted for years - can thoroughly reccomend fertility friend (fertilityfriend.com) to keep a track of it all. I now have my charts going back five years (with the odd break where I was pregnant) and it's an amazingly useful resource to point things out to disbelieving doctors and consultants. Aftrer a while it predicts when you will ovulate based on your earlier charts, which is useful. I basically took my temp every morning and immediately updated on my laptop before i forgot - all before getting out of bed! And I used the ov sticks too, and CM. Obsessive, moi? smile

It took me four goes to get pg this time so fingers crossed for you on your next cycle.

sarahs999 Fri 31-Aug-12 12:20:37

Just heard from my consultant and based on my bloods my nuchal risk is 1 in 460, which given my age is very good. So relieved. So I guess now I can tell people!

mollieboo Fri 31-Aug-12 12:33:13

Hi sarah, that's great news re your results, hope you have fun sharing your news.

Thanks for the info. I've put the fertility friend app on my phone and have read their website, I didn't realise how much there is to know. Wow five years of charts is impressive, will be forwarding any questions your way!

Jemimapuddleduk Fri 31-Aug-12 12:41:51

Hello everyone just marking my spot, will catch up properly later.
Had my scan yesterday and all l

Jemimapuddleduk Fri 31-Aug-12 12:42:12

Oops, posted too early. All l

Jemimapuddleduk Fri 31-Aug-12 12:44:36

Damn it! Scan went well, measured 11 weeks 2 as expected and we got discharged from the fertility unit which is a bit scary! Have been told to stay on pred till 14 weeks then wean. Have to stay on fragmin and aspirin throughout. Got normal nhs dating scan on Wednesday but told family and friends yesterday. Makes it feel more real. Can't believe it. X

mollieboo Fri 31-Aug-12 13:31:02

Hi Jemima, congrats on your scan, must be lovely to be able to everyone your news x

sarahs999 Fri 31-Aug-12 13:59:48

Congratulations Jemima, that's great news.

Can I just ask, are you with Mr Shehata? Just interested as to why yu're wearning off pred at 14 weeks instead of 12...

Havingkittens Fri 31-Aug-12 14:28:58

Hello. Well done for setting up the new thread Sarah, and also congratulation on your great Nuchal result!

Jemima, pleased to hear your scan went well, especially after your anxiety last week.

My next scan is Tuesday morning. I'm feeling reasonably calm as my symptoms are gradually progressing. I've felt quite queasy the last couple of days too. I know that there are still no guarantees but I'm trying to stay positive.

Work has been a bit quiet, which is ok as I have had lots of catching up to do but I'm getting a bit nervous about working again next week as my hands are really shaky! I should be ok as long as there's no liquid eyeliner or dark lipstick. Painting nails is a pretty tricky business too! Yikes.

Hope everyone has a lovely weekend. x

Chasinrainbows Fri 31-Aug-12 14:34:13

Hi all , I'm new to this thread . I recognise a few names from the super ovulation thread. Looking for some advice ladies . I'm currently on 3rd cycle of pred and 1st super ov. I got a v faint bfp yesterday on 14dpo on a frer. This morning still showing as not pregnant on a digi and intnet cheapies so still really waiting for bfp to be confirmed. I emailed the office yesterday but Louise is off till Monday , do you think I should go back on the pred ? I stopped at 10 dpo as the test was negative. I've had bloods taken today so one way or another ill know by Monday . As I had neg tests earlier it shouldn't have anything to do with the hgc shot . Thanks in advance xx

Jemimapuddleduk Fri 31-Aug-12 14:54:04

Hello,
rainbows, good news on the bfp. I would say yes go back on the pred. So annoying that you can't get through to someone medically trained though. Hopefully some of the other girls may suggest a way forward. I was on pred from before ovulation so havnt been in that boat.
kittens all the best for the scan next week and great news about progressing symptoms too. Your job sounds like it is a tough one when you are not feeling 100% and a bit shaky! It is way more exiting and glamorous than me (boring accountant!).
sarah, great news on nuchal, bet you are so relieved and it's great to be able to tell people. I am up north and under the care of a nhs fertility consultant who prescribed the pred and other things after my 3rd mc and during second iui round (I have never actually been tested for nk cells, I guess this isn't covered on nhs?). Not sure why I am on pred and bloody cyclogest till 14 weeks as 12 weeks seems to be the norm on here.
Hi mollie I hope this 3rd month is the month for you, fingers crossed. Good luck with the charting too.
pq, great to here you are home and back to home comforts. Glad that your little one seems to be keeping put too! Hope you are doing ok and not too uncomfortable with everything.
olives I hope the weaving is going ok. It is scared after regular scanning that there is then a big gap to 20 weeks. Good luck with the Doppler, I may have to invest to indulge my incessant mentalling.
Hi to everyone else
X

Chasinrainbows Fri 31-Aug-12 15:04:37

Thanks Jemima - I've taken it to be on the safe side and I'll wait till Monday for Cyclogest smile

sarahs999 Fri 31-Aug-12 15:14:40

Rainbows, on my current pg I stopped taking pred at 10 days past ov as I had a BFN, but then started it again at 12 days past ov as I got a +. Louise said it would be no prob to miss those two days adn indeed, that seems to be the case as I am now at nearly 13 weeks and all looks fine. So I would go back on it to be on the safe side.

Chasinrainbows Fri 31-Aug-12 15:33:10

Ah that's good to know Sarah thanks . And congrats on your pregnancy, hope all is going well x

Buster76 Fri 31-Aug-12 17:19:33

Hello all!! Thanks sarah for setting up new thread. I posted earlier on the other thread not realising it was full...doh!!
Are you with Mr S sarah Why are you not weaning till 12 weeks? Is that because you are on the lower dose? Lovely news on the nuchal too smile
Duggs Im like kittens fell relatively easily before steroids. Started steroids October.....nothing! Had a few months break then BFP just before starting ivf. Definately feel they affected my cycles.
rainbow I'd definately crack on with the steroids wink
Well done with the weaning megmum and your sound words of advice smile
battery if your there, you maybe busy changing nappies wink How long did you stay on clexane and aspirin for?

Well had my first scan today and the local hospital. Measuring 6 weeks with a flicker of a heartbeat smile Tried not to get too excited, been here 4 times before!! Im sure with the others ive bled before now so trying to see that as positive. I wish I could fast forward 6 weeks!! Ive never got past 9 weeks, so roll on 3 weeks. Seeing Mr S in 2 weeks for next scan and lipids.
Feeling a little sick although trying not to go too mental thinking about my symptoms or lack of them. Still knicker checking and nipple flicking confused

Could someone move me onto the 1st trimester please? Havent a clue how to do it!!?
Buster - 4 mc. VHKC (pred 40mg, lipids, clexane, cyclogest,aspirin) 6wks
Anyone recommend a hotel in Epsom? or nearby?

xxxx D

Havingkittens Fri 31-Aug-12 18:07:05

Great news on your scan Buster, one step at a time.... the waiting is pretty difficult though, I know all to well!

Has anyone else found that the pred has turned their hair to shit? I'm trying to work out whether it's the pred or just old age but my hair has been horrible for the last year or so. Really fine and brittle. I heat style my hair quite a lot so that probably doesn't help, but so much of it has snapped that I've just had it cut to bob length to stop it looking so frazzled.

Jemimapuddleduk Sat 01-Sep-12 08:58:48

Fabulous news buster!

Yes to general hair crappiness and I have only been on the pred 12 weeks. Dry and unruly!

Arianrhod Sat 01-Sep-12 10:30:31

Bookmarking smile

freelancegirl Sat 01-Sep-12 15:12:17

Bookmarking too. But thanks Sarah for creating the new thread and how wonderful to hear all this good scan news! It's great that the gap that was there between the bfps and the ttcs is well and truly filling. And big welcome to Rainbows!

batteryhen Sun 02-Sep-12 03:16:43

Hello! Sorry I have been so crap at keeping up. The days seem to fly by but I have been reading and lurking!
Firstly I want to say to kittens. YAY! I am thrilled for you!! It's about time you had some luck!!
buster I was on aspirin until 34 weeks and am still on the clexane until DS is 6 weeks old . I have to now inject above the tummy button because of the Cs scar and am bruising all over again!!

It's 3am and am feeding DS. He is such a good boy and is on 3hrly feeds which is knackering. He has a very good internal body clock!

These first weeks are flying. I can't believe how much life has changed, nothing quite prepares you for the shock of a newborn but I am loving it especially as I learn more about him and my confidence grows. It's 3 weeks now and I still feel like I have been kicked by a horse in the tummy but am getting better all the time.

Sorry for lack of personals, am typing one handed on iPhone ! Xx

lemonsherbet Sun 02-Sep-12 07:54:13

bookmarking

freelancegirl Sun 02-Sep-12 09:35:59

Am with you battery, on all the above - it's knackering and wonderful all at the same time. And time flies! I have so much to do and none of it is getting done. It doesn't matter I guess, practicalities can wait. 6 weeks after the CS (actually it will be 7 weeks on Tuesday) and physically I am feeling fine. Just get the odd twinge every now and then but this week am going to try to start exercising again of sorts. Pregnancy really weakens the body and I need to lose some of these pregnancy pounds! Probably a few Pred pounds in there too.

Abney Sun 02-Sep-12 18:21:45

Dear all, I finally got my my BFP yesterday 12 DPO. I couldn't believe it. I was jumping up and down with my DS. Not that he knew why we was jumping up and down. 6 months of SO which was a failure for me and then trying naturally for the first time since last miscarriage and success at last. I know there is a long way to go and after only being successful once in 11 attempts it is going to take another miracle for this one also to be a success. For those still ttc nearly all 11 were conceived in the morning and it could be a pure coincidence but I followed Havingkittens advice re the Evening Primrose and Starflower. In regards to the waterfall that the little swimmers need to swim up I really did notice the difference after only taking it for a few days. It could also be that perhaps due to the absence of fertility drugs it made a difference but if I put my money on it then it would be the Primrose and Starflower. Havingkittens if it was down to this thank heavens for the tip. I have already decided I don't want any scans till the 2nd set of intralipids if I get there as I find it too terrifying. I will also go back to wearing black knickers as I don't want to look or keep examining everything. Anyway good luck for all those still trying and all those waiting for scans.

Sarah great news on the nuchal result. Jemma great news on the scan. Good Luck Havingkittens in Tueday. Keeping everything crossed for you.

Can anyone help on the intralipids ie if I e mail Cheryl now and say that I need them when is it likely they will do them. Is tomorrow a possibility or is it most likely to be Tuesday.

Jemimapuddleduk Sun 02-Sep-12 18:31:53

abney congratulations on your bfp today! What lovely news. I have everything crossed for you. X

Buster76 Sun 02-Sep-12 19:09:42

Hello!!
Thanks battery will maybe have a chat with Mr S when I see him for my next scan. I have factor V like you but on my treatment plan it says clexane till 12 weeks and aspirin till 20 weeks confused
Nice to hear from you battery and free - good to hear the boys are keeping you busy.
My hair kittens looks terrible!!
Congratulations abney - I would think you should be able to get the lipids tomorrow. Especially if you live close enough to get there.
I had a bit of a wobble today, feeling tired and scared!! Had some discharge (sorry tmi - I hate the word discharge!) today. It looked like it was the pessary but more creamy/beige!! Anyone else had this? Inspected it for a while - didnt look like blood but definately not white! hmm
Ive been trying to alternate between front and back blush but my bum is getting sore!! Oh dear, things we have to do!!

Hope everyone has had a good weekend.

xxxx D

Abney Sun 02-Sep-12 19:30:46

Hi Buster thanks for the info. I do live near. I think I will go to work but be prepared to drop everything and get a train from London to Epsom. It should only take an hour to get there. Re those pessaries they are a nightmare. I found half of one came out one day and I thought it was something else until I remembered. Everything is frightening so try not to worry. The best thing to do is not look. I got out the shower and saw browny water on the floor and then after studying it on my hands and knees I realised it was tea bag juice grin

batteryhen Sun 02-Sep-12 20:22:20

Buster, I think I am taking the meds for longer as I also tested positive for the TEG test at St marys x
Abney- brilliant news!! Xxx

sarahs999 Sun 02-Sep-12 21:33:24

lovely news Abney, congrats

Havingkittens Sun 02-Sep-12 22:52:41

Thank you battery. Great to hear you're getting into a nice routine and enjoying your lovely boy.

Great news abney. Have answered your post more fully on the SO thread.

I am now having visions of a bunch of us sitting in the NLC waiting room all hooked up to drips with crazy frizzed out hair!

abney, your comment about the teabag water is so funny but strikes such a chord at the same time. Bit like me last week with the beetroot wee! Excuse the TMI on behalf of my poor old OH but he has rather bad piles at the moment and every time he comes out of the loo he says to me "If you see blood in the loo, don't panic, it's not yours."

The ups and downs of mentalling are ridiculous aren't they? Yesterday I was like an eating machine, I couldn't stop. From first thing until about 1am when I got home from a party (where, once again, nobody mentioned my not drinking - but I had decided to drive anyway). I also had a massive tired slump and a big snooze in the afternoon. So, all looking good. Today I haven't been tired at all, and my only symptom has been constipation so now I'm anxious again. Daft huh?

I'm also slightly nervous because, I think I mentioned this a while back, but my next door neighbour, who is a couple of years younger than me, has just got married and we suspected she was TTC. I spotted her drinking Becks Blue at our street BBQ today and combined with a couple of other little things that I picked up on I'm pretty sure she's pregnant. Probably a similar stage to me. So now I'm thinking "Shit, what if it goes wrong again for me and I have to watch her going through all the stages I should've been". When really I should be thinking "Oh, how lovely. We'll both have babies at the same time."

Well, I guess I only have to wait until Tuesday morning to see what's what.

MegMum25 Mon 03-Sep-12 06:29:14

Hi all. To kittens glad to see your symptoms are still bothering you,
Crossing everything for you next week
- keep
On plugging. Also congrats to
Puddle duck. I so remember the feeling of being cast out of the arms
Of the private system to Nhs care. It's a rude awakening and a long wait between 12 and 20 weeks. I couldn't handle it and both times had a private scan in between due to mentalness! I've never thought about the hair but pred has ruined mine! It's frizzy all the time. My moon face is calming down at long last & I'm less angry and trying to look fwd and hope my unfussy womb (Grrrr) picks a good
One for next time
X

Jemimapuddleduk Mon 03-Sep-12 07:19:48

buster, try not to worry with the pred fall out (easier said than done!). I was instructed to use the rear as its known to irritate some people's cervixs. For what it's worth it has really irritated my bowels, often causing bleeding and mucus (sorry for early morning grossness), eek. The fertility nurse seemed v unconcerned when I mentioned it though.
Sorry this is a quick one, just dashing off to work x

GreenOlives Mon 03-Sep-12 08:39:03

Just a quickie to say congratulations to Abney - fabulous news! smile Hope you get the lipids sorted today.

Arianrhod Mon 03-Sep-12 10:30:37

And another very quickie from Crete over a rubbish network to say a massive congrats to abney, I'm so pleased for you smile

Chasinrainbows Mon 03-Sep-12 12:19:29

my faint bfp must have been an evap . A turned up in full force yesterday. Back on the letrozole sad xx

mollieboo Mon 03-Sep-12 18:27:37

abney huge congrats on your bfp.

chasinrainbows hope you're ok, you're probably feeling v peed off after getting your hopes up. Im ttc too so hoping next time is lucky for all of us ttc at the moment.

Hi to everyone else.

Abney Mon 03-Sep-12 18:37:55

Just a quickie to say thanks for all of your kind words. It really does help knowing people are routing for you. i haven't told my brothers and sisters yet as i hate telling them I am PG and then telling them I'm not so it is nice to confide in you all. I have fallen out with my mum who is a bit nutty but to try and upset me she said to me a couple of weeks ago that she had come to all my scans and seen dead foetuses. i had this ringing in my ears for days. It would be really nice if this was a success for many reasons this being one of them. As you can imagine i won't be inviting her to anymore scans.

BellyD Mon 03-Sep-12 22:55:36

chasinrainbows welcome, and so sorry that AF has turned up. sad

Abney great news on your bfp. Wonderful news. Did you manage to get your intralipids today?

Buster76 Tue 04-Sep-12 10:32:15

lurking for news from kittens xx

Havingkittens Tue 04-Sep-12 11:31:19

Scan was good. Strong heartbeat and measuring 8+3 as expected. Now sitting here having my intralipids. Phew!

freelancegirl Tue 04-Sep-12 11:45:36

Woo! Great news kittens! Enjoy the infusion. Really pleased for you too Abney. Just a quickie from me as at docs for six week check (albeit at 7 weeks)

batteryhen Tue 04-Sep-12 12:02:12

Hooray kittens! Have been lurking for your news xx

Buster76 Tue 04-Sep-12 12:08:28

Nice one kittens grin

Enjoy the lipids wink

xxxx

PQ77 Tue 04-Sep-12 13:29:05

Yay kittens !!!

willitbe Tue 04-Sep-12 14:04:18

Kittens - that is great news! grin

PQ - well done for keeping your legs crossed and holding tight, my friend is still holding onto her little one too, I am amazed at how well babies can hold on in your situations, but every day counts big time.

I am not sure whether to take my name off the list or not. I have basically brought a halt to ttc at the moment, I am trying to get fit and lose a couple of pounds of extra weight that I have gained over the on/off pregnancies. I am starting a new course (well I actually have two to chose from and struggling to decide which is right for me) having finished working away from home. I have not got to the point of saying never and no more babies, but as I am approaching 45 the chances are reducing dramatically anyway. I will continue lurking here for a bit to follow how you are all doing, if that is ok with you all.

GreenOlives Tue 04-Sep-12 14:09:36

Great news Kittens! smile

Abney Tue 04-Sep-12 15:38:52

Kittens fantastic news. I find I am just as nervous waiting for other peoples scan results. When is your next scan now? Is it the 12 week one? I have just had the intralipids and my scan is booked for 3 weeks if I make it that far but as the intralipids are done at 4 and 8 weeks I don't want to put myself through a scan at 7 weeks and then another one at 8 weeks. Even talking about it makes me feel like I am jinxing it.

Hello to everyone else.

Havingkittens Tue 04-Sep-12 16:26:56

Hi abney, I think they were just hooking you up before they came disconnect me. I got a bit held up in traffic this morning. I stayed in hiding in the little rom though as I was feeling very dozy. I'm still in Epsom, waiting to go and pick my car up from it's MOT so as well as driving here across London in rush hour this morning I get to do the same on the way back! Oh joy. I hope my bladder can take the strain! My next scan is in 2 weeks so will be about 10+3, then my Nuchal at 12 wks at FMC and intralipids and scan at 14 weeks if the Nuchal is ok.

Havingkittens Tue 04-Sep-12 16:28:35

Thank you everyone for all your words of support and encouragement. x

ChoccyPud Tue 04-Sep-12 16:34:22

Yay kittens!! Delighted smile

PQ hope you're doing ok there?

Clabbage Tue 04-Sep-12 20:34:34

Can I join you all? I have been lurking for so long that I have read every thread and am so thrilled to see so much recent success.
My history starts a bit differently as I had three successful pregnancies in my early 20's with my first partner. Heartbreakingly, I lost my firstborn ds to cot death, so battled fear to have my 2 dd's. I then mc'd with my new partner (me aged 36, now 40)had our first Ds, mc'd had our ds2. I can hear you all wondering why on earth I didn't just count my blessings and walk away, instead I tried for one more and have had four more mc's, totalling 6. I saw Mr S after mc6 and was diagnosed with high Nk cells and put on the standard program. I am now pg again on treatment but went for a NHS scan at 7w 1, but no clear sign of embryo. I have another scan on Friday but realistically am not expecting good news. I see Mr S on Saturday so I guess will have to get his view.
I wish I could walk away from it all in truth but I just feel all this fight and heartache will have been for nothing if I do. Truth be known I just don't know how to give up. My parenting journey started so devastatingly that I can't imagine letting go on such a low. I do genuinely know how lucky I am to have what I have.
Sorry for lack of personals, I have read your stories and really felt the highs and lows with you and wish you all so much success.

iggi777 Tue 04-Sep-12 21:16:45

Clabbage what a lot you have been through. I hope you manage to get what you want this time.
My DH was talking at the weekend about "maybe" trying again and I just know it's not for me - I'm done. I think until you feel like that you can't stop.

Kittens! I am so so happy about your scan. And a bfp for Abney too! I am such a numpty I posted twice on the last thread today and have just noticed the thread too full to accept messages bit..

duggs1976 Wed 05-Sep-12 07:06:11

Hi clabbage welcome. AF turned up this morning - just in time for the dr s anniversairy !! Can't believe how impossible it is to get pregnant these days- considering getting drunk and hanging out in sleeZy bar for 25 yr old in vain hope I can become impregnated just because I've been on here sooo long !! Yawn sad

ChoccyPud Wed 05-Sep-12 12:15:15

Big hug to you duggs. To try to entertain you, imagine me sat at work having suddenly developed a rash on my upper arms that right now is doing that horrible tingly-itchy thing such that I want to SQUEAL!! Side effects eh?! sad

Welcome clabbage. Sorry to see you here. Am v impressed you've read through all the threads!

Arianrhod Wed 05-Sep-12 12:24:48

And another big hug from me too duggs, I rather know how you feel, just hit my one year Mr S anniversary a couple of weeks ago and thought, bugger this, I had more success getting pregnant before I started seeing him! LOL to your 25 year old comment ... I have to say that similar thoughts fleetingly and irreverently crossed my mind on occasion too smile

clabbage Welcome to the thread, so very sorry for your devastating losses. Like iggi said, it's not until you finally do feel "that's enough" that you really can give up, I think - otherwise I'd have given this all up about 6 months ago, with my 45th birthday looming ever larger in 4 months time. Until that point, I guess you throw your all at it, and try to take heart from the wonderful success stories on here.

lemonsherbet Wed 05-Sep-12 18:10:11

duggs also coming up to the 1year anniversary and also think similar, so you are not alone. Big hug to you, sorry about AF

Sorry for the lack of personals have taken to lurking really

mollieboo Wed 05-Sep-12 18:26:42

Hi clabbage, welcome to the thread, so sorry to hear of everything you've been through. Apart from my mcs, I lost my ds in January when he was five months old. So sad to hear that you lost your ds too.

Clabbage Wed 05-Sep-12 21:36:47

Thank you so much for the welcome.
mollieboo I'm so sorry to hear that you lost your ds too, nothing is ever the same again is it? I truly hope that success comes your way very soon.
choccypud I think it probably marks me out as a bit strange that I have read all the threads. True Geek alert! It has however filled some pred fuelled sleepless hours.
The success on here is truly inspiring and I have such respect for those of you who keep on seeking new avenues to get there.
Just wondered if any of you knew what Mr S is likely to do if this pregnancy fails? Does he use hydroxy after one loss on treatment?
Sorry to those of you reaching anniversaries that remind you of the bloomin horrible journey you've been on. My scan on Friday falls on the EDD of my last miscarried pregnancy. Grrrr

Abney Thu 06-Sep-12 06:52:25

Dear Clabbage I am sorry for your losses and glad you found your way to this thread. I have had 1 success out of 11 and I am currently pg. This time I am having everything thrown at it. In regards to the Hydroxy I think Dr S says that you need to fail twice on the pred before he adds it. I think, however, you should insist on it. It does look like it is having positive effects. If it does goe wrong then at least you know that you have done everything possible. Good luck tomorrow.

Arianrhod Thu 06-Sep-12 09:19:34

A fellow geek! smile I was given hydroxy after one mc on the pred, but it was still a 'new' thing then, think only free had had it before I did (and choccy at the same time as me, I think). Been on it almost 9 months now, no side effects that I know of at all. Don't know if it's doing anything to quell my NK cells either, mind you, but hoping! Fingers firmly crossed that this scan will put the shadow of your last mc to rest, that it's a good one!

Havingkittens Thu 06-Sep-12 09:49:00

Hi clabbage, welcome to the thread. So sorry to hear of all that you've been through. Loosing a baby to cot death must be indescribably painful.

Duggs, sorry to hear AF got you. It really does feel like a smack in the face after so long doesn't it? I was on Mr S's treatment for 15 months before I got pregnant but had also had an enforced break before starting to TTC until I got my referral with him and my test results back so all in all it had been 19 months since my last miscarriage before finally being pregnant again.

This is my first pregnancy on his treatment and I have managed to get myself on Hydroxy as well. When I went to him a couple of cycles ago I told him that I'd been on the pred for over a year and that it was making me feel really lousy and asked if there was an alternative that I could take whilst TTC (I didn't mention hydroxy, I sort of played it innocent!). He said that he would put me on the hydroxy at the beginning of my next cycle, which was the cycle I got pregnant on and so I started taking the 40mg of pred from BFP and have stayed on the hydroxy. Maybe he left me on it because I have VHNKC and also because it's taken me so long to get pregnant, combined with my age and the fact that I have other high risks in addition to miscarriage that maybe he thought he'd just throw everything at this one in case it's my last chance.

At my job yesterday everyone was talking about babies and pregnancy. One of the girls there was pregnant and the others all had kids. I was just silent through the conversation. It was quite strange. Especially when they asked the photographer if he was planning to have a second and he said no because his wife had found pregnancy really traumatic due to having to have a CVS because they thought the baby had Down's (lucky for them their baby was fine). Wow, that brought back a lot of horrible memories. And still, there I was, all quietly getting on with my work whilst they probably thought I was silent because I had no idea or experience of anything they were talking about. Meanwhile, there's me thinking "Next time you see me I will hopefully be obviously pregnant, or perhaps I will have just had one of those big needles in my stomach too and will have had to make that awful, hideous decision for a third time, or perhaps I won't even get that far...."

mollieboo Thu 06-Sep-12 10:06:28

Morning All

clabbage no you're right its never the same again, my life has changed forever. Thank you, hope I get to have another child soon. Hope you get some good news at your next scan.

kittens sounds like you've been through so much in your previous pregnancies. Really hoping this works out for you. Its hard listening to conversations in work about baby stuff when you're in a fragile state isn't it.

Was in work yesterday and a lady who lost a baby years ago and now has three grown up children and grandchildren was saying I should count my blessings - my lovely husband, new house, family and friends - and should just think if it happens it happens re having another baby after losing my first one. I couldn't help thinking it was really patronising of someone to say that who has three children when I have none with me and have only just lost my boy. I think I should have said something instead of silently seething. She has no idea how much of a fertility struggle I'm going through and that people in our position can't just be "if it happens it happens", we have to plan it all very carefully and it takes over every waking thought! Sorry for the moan.

Clabbage Thu 06-Sep-12 11:40:45

Thank you so much for Hydroxy advice. I think it's tricky to know the best approach with Mr S, assertiveness or 'innocence'.
In truth, I should be focusing on this current pregnancy but have to deal with the reality that no clear viable embryo at 7 weeks is not good.
mollieboo Why is it not possible for folk to understand that as grown women, we can both count our blessings and feel deep relentless grief all at the same time? People are desperate to mitigate others grief, I think it's so THEY can cope with it. You are at such an early stage of loss and I would imagine every day feels a bit different. It is not a linear process and I am so so sad that you are now struggling with mc. Cruel cruel cruel. Much love to you.
If I was a praying type of girl having kittens and Abney I would send a few up for you. Please know my non religious version is out there for you x

iggi777 Thu 06-Sep-12 13:06:45

Oh Mollieboo, sad - I wonder if someone took her 3 children away would she be "counting her blessings" that she has a nice house and a husband?
She may have been trying to encourage you, but it didn't exactly work.

Bertha337 Thu 06-Sep-12 14:25:03

Just checking in- found board! Phew!

Hello and welcome to the newbies;
And congrats to Sarah and kittens for hitting milestones (I am forgetting someone...)

On holidays and it is 31 and sunny. I think it's the first time I have been warm in a year! This sun is like a ray of positivity. Olives- I am with you on the nervous wait between 12-20weeks scans. 5 more weeks to go! I tried to get midwife at checking in appointment to listen but she was having none of it! Positives: boobs are like watermelons! Other than that not much else is happening besides the occasional tug to what I assume is a ligament.

Okay; I am off to enjoy the days of sun while they are here!

Hi to everyone; sorry for not catching up properly on everyone's news.

mollieboo Thu 06-Sep-12 17:51:15

clabbage thank you for understanding.
iggi that's exactly what my mum said too, how would she feel if she didn't have her children. People mean well, just misguided sometimes!

Hi bertha enjoy the sunshine!

Havingkittens Thu 06-Sep-12 17:57:20

mollie, I find it so baffling how people can such misguided platitudes rather than just acknowledging your loss which is kinder and so much more respectful.

clabbage, thanks for your good wishes. I too am an atheist. It's tricky this who to ask to look kindly on you when hoping for a break isn't it? I'm mostly asking my mum to watch over me at the moment as I lost her recently. It gives me some comfort, but I won't blame her if it goes tits up!

mollieboo Thu 06-Sep-12 18:15:40

kittens yes exactly, just acknowledging what someone is going through and how tough it is is enough, no unwanted advice needed!

Its lovely to think your mum is with you, looking out for you. I feel that way about my son too x

iggi777 Thu 06-Sep-12 20:18:58

I had my first counselling session today. Was interesting (and not too upsetting) just to start to talk it through. She was very interested in our treatment programme too.

Abney Fri 07-Sep-12 07:02:18

Hi Clabbage thank you for your wishes/prayers yesterday. After hearing about yours and Mollies losses and then seeing your kind comments I wanted to burst in to tears. Life is really unfair. I hope and pray that everything is OK for you both in the future.

cornflakes30 Fri 07-Sep-12 07:54:24

Hi all took me ages to find the new thread. Well I had my scan on Wednesday and yet again not good news lucky no 7 it's not, I'm only measuring at 5 weeks no heartbeat and it should have been 6+2 so not even close Of course they won't say it's a mc but she is ckncerned it's eptopic great!!!
They say oh it may be ok well after 6 times before I think we can say its not, no point jn dreaming!
So I'm booked into epu in two weeks to re scan hoping it all happens naturally before tho. It's just not fair anymore.
7 mc jn 3 years have tried just about everything I can think
Of.
We have decided to go to
A private clinic now to get someore tests but can't decide which one has anyone any experience? I have been looking at zita west dr gorgy and st Mary's they are all do different it's so expensive I want to go to one that covers everything not just bits. I have been to st Grorges and st helier
I have v high nk cells already and a thryroid problem. I think it's my egg quality but what do I know!!!
Thanks for listening to me waffle on

iggi777 Fri 07-Sep-12 08:18:47

Oh Cornflakes I am so sorry. How absolutely unfair. I know it is easier not to have any hope, so I won't talk about that. I only had tests with Mr S so I don't know about the other clinics - someone on here has seen Dr Gorgy I know.

mollieboo Fri 07-Sep-12 08:32:36

cornflakes i'm so very sorry to hear your news, hugs to you both x

I've been to mr s too but am sure someone on here has been to dr gorgy.

Havingkittens Fri 07-Sep-12 08:39:30

Oh cornflakes, I'm so sorry sad. x

duggs has been to the Zita West clinic. They do sound very thorough. Why don't you PM her? She's a mine of information and always very helpful in sharing her findings.

Arianrhod Fri 07-Sep-12 10:22:58

cornflakes So very sorry for your sad news sad I think it's duggs who has also been to Dr G, she's definitely the mine of information that kittens says she is!

Abney Fri 07-Sep-12 12:51:51

Hi Cornflakes really sorry to hear your news. It's just so unfair. Thinking of you at this sad time.

batteryhen Fri 07-Sep-12 14:52:54

Cornflakes sad xx I went to St Marys and found them to be really thorough x don't forget you can go on the NHS to St Marys which is what I did. I think ( not sure) that you can self refer? Give them a ring when you feel up to it xx much love to you xx

duggs1976 Fri 07-Sep-12 15:25:52

Oh sorry cornflakes really sorry. Yep unfortunately I've been to them all. St marys raj rai, dr s, dr gorgy and zita west. The main thing I've found is everyone is an expert in their own little area and they can be a bit blinkered. If treatment isn't working then we should look at other areas. PM me your history and I will try to answer with the most relevant thoughts and info i can. Big hug.

Clabbage Fri 07-Sep-12 16:11:32

cornflakes am gutted for you. I know that a glimmer of hope is not always useful but I have had a successful pregnancy that initially measured a week out.
I had a scan today (having seen no hb at 7 weeks) to find a teeny 5mm embryo with a heartbeat. I should be 8w 2 and measure 6w 4. I now have no idea what to think! Has today just delayed the inevitable or is there hope? I have had 35 day cycles which would account for a week, but 2?? I see Mr S tomorrow, so another scan and his opinion may help. Still, I am now officially pregnant until proven otherwise.
I have to say the NHS were great today (v mixed experience to date) and made the effort to find a consultant who ventured down between c sections to have a chat with me. He has provided me with Fragmin if I want to take it. Any thoughts?
arrinrhod are you now at the end of your anti B's and does that mean you are trying again? Sorry, just trying to get to grips with where we all are.

suemays Fri 07-Sep-12 17:46:21

Cornflakes sorry to hear your news.

I also have some bad news - just had my 20 week scan and the baby has an abnormal kidney. It is double the size it should be. I have no idea what the chances of it surviving are etc so have an agonising wait over the weekend to speak to someone. Tried calling Mr Shehata but he is home for the evening.

Arianrhod Fri 07-Sep-12 17:48:14

clabbage Where there's life there's hope - or in this case, where there's a hb there's hope! No, I finished the anti-bs a few weeks ago, then had a hysteroscopy, now on cycle 5 of superov and having cd10 follicle scan on Monday.

mercator Fri 07-Sep-12 18:00:57

Cornflakes so sorry about the scan. Duggs is the best person to advise on alternative clinics. Just so very sorry and gutted for you.

mercator Fri 07-Sep-12 18:11:52

Sarah thanks for opening a new thread. Was completely stumped why there were no more posts until I tried google.

Sue so sorry to hear about the scan and very worrying for you regarding the kidney. I presume they are sending you to see a fetal specialist. I am not sure which hospital you are under as I know you are relatively close to me. I can recommend Mr Mark Selinger at Royal Berks but not sure if that's close to you or not.

I know there has been quite a lot of positive news on the new thread so congrats to those ladies, Abney, Olives and Kittens.

Welcome Clabbage and fc next scan is positive.

Sorry if I missed anyone.

just been for my pre op appt today for elcs next Friday. Absolutely terrified of the op and recovery and hoping lo ok as measuring a bit small by tape measure but they haven't scanned for growth. However, baby has turned and is now breech! Do feel extremely nervous and until I know baby is well cannot get excited. Dh away until weds so just hoping lo stays put!

Arianrhod Fri 07-Sep-12 22:37:51

sue So sorry to hear the news about your baby's kidney. Fingers crossed there's something helpful a specialist can do to help.

iggi777 Fri 07-Sep-12 23:12:27

That's so worrying for you Sue, a shame they gave you that news and then no-one to talk to about what it means.
Although you are probably desperate for information I don't think this is a time for Dr Google, can stress you more.

iggi777 Fri 07-Sep-12 23:19:03

Clabbage seeing a hb is always reason to hope, though I know sometimes hope can be the cruelest thing. Glad you have an appointment soon to talk it over.

Just to say Mercator, my doctor told me when arranging my elcs for ds2 (who was breech at the time but turned) that a breech baby was slightly easier for the docs to get out when doing a section.

Abney Sat 08-Sep-12 06:56:56

Clabbage good luck today with your scan. A heartbeat is really good. Hopefully Dr S can shed some light on it all. Suemays sorry to hear your news. It is a shame that noone was there to talk to you. Is DR S not working today? or Louise?

Mercator good luck for next Friday.

cornflakes30 Sat 08-Sep-12 09:11:02

Thank you everyone for all your kind words I had done spotting last night do looks like its starting which is good at least I can move on and know bits a definite mc.
Cabbage you poor thing such a worrying time but a hb is great news and growth since thd last scan ax well which can only be positive. FC for you it stays strong.
Suemays bless you thinking of me when your going through so much how scary I can't believe there was no one to talk to you to pug your mind st rest hope everything is ok xxxx
Duggs thank you so much I will pm you with questions thank you xxxxxxx
Hope everyone enjoys our summer weekend xxxx

suemays Sat 08-Sep-12 11:48:31

I spoke to mr s this morning who has made me feel slightly better. He said it was very common and that so long as there is one working kidney the baby is not at risk. I am going to try and get an appointment at the fetal medical centre in Harley st on Monday to see how bad the kidneys are. If they are both abnormal I will probably have to terminate the pregnancy as the baby won't survive. I was just starting to relax as the baby has been really active and nothing was picked up on my other scans. I just hope that the other kidney is ok. I wish now I had my 20 week scan privately as I would have had the answers straight away. The next few days will be torture.

freelancegirl Sat 08-Sep-12 12:14:11

Hi all, sorry about the less than frequent posting from me. Still polishing my new skills!

So sorry to hear of your losses Clabbage but welcome to the thread. The thought of cot death strikes a cold chill to a paranoid new mother like myself so I can only being to imagine the life-changing heart ache you and (of course Mollie too) have been through.

Sue what a stressful situation for you - after everything that has happened to get you to this stage too. Glad Mr S was able to help you feel more positive about it. When are you likely to get the results back? Is it worth you going for a private test at somewhere like the FMC too? Am sure the NHS are pretty thorough as well, just agonising waiting for the results.

And Cornflakes am so damn sorry for you too. We all know what that pain is like and I hope the girls here can offer you some comfort. It's so a painful, sad slog. I hope Duggs can help with her encyclopaedic knowledge of testing. Sorry you've been a bit despondent too Duggs. It's only natural. Am hoping that Kittens BFP helps those who have been trying for a while without one keep going. Like Battery I went to St Mary's after my 4th mc but by the time I had got the appointment I was pregnant again with this successful pregnancy. But they did give me regular scans which was nice.

Good to hear some good news too with pregnancies progressing and good scans! Merc - wow to the CS next friday!! How are you feeling? Do you know what flavour the baby is yet or is it going to be a surprise. Can't remember now whether it is your first or not <glares pointedly at you all for not keeping up the list for quick referral!--

Am out and about a lot now - getting the pram up the steep stairs of the flat is a challenge I have finally mastered - but very little time to sit on the computer at home being that once we are here he likes my full attention! He's not a great sleeper either and does not go down in his moses basket in the daytime. Sleeps wonderfully when out and about in the pram - but that kinda makes it difficult to follow the 'sleep when the baby sleeps' advice. He will be 8 weeks on Tuesday! Still can't quite believe it.

Got to run as we are getting ready to go to the Olympics later and need to try to master the sling. Love to all - keep going everyone, you will get there xx

Havingkittens Sat 08-Sep-12 16:39:48

Oh sue, you poor thing. You must be feeling so anxious. I don't know if they are open at the weekend but you could try giving ARC a call for a chat. They are really nice and will be able to talk things through with you, hopefully help rationalise things and put your mind at ease. Their helpline number is on this page www.arc-uk.org/contact-us

I have made my appointment for my Nuchal at FMC, it's on 3 October when I will be 12+4. Only thing is I have also got my date through for my NHS 12 week scan/Nuchal which is 28 September (11+6) so I'm at a bit of a loss what to do. I wanted to have the private one first but don't know if they will do it at 11+3, which would be 26th. I want to go on a Wednesday because that's when the professor is there, who is the top guy in the country. I'm starting to get anxious about it too as, where before I was just tackling one 'bridge' at a time and thinking that I may not make it that far so no point stressing about it yet, but now it's looking more real. Gulp.

suemays Sat 08-Sep-12 18:54:40

free I am going to try and get an appointment at FMC on Monday to get some answers. Mr s suggested I see them as they are the best in their field. I just don't know how I will cope if the outcome is bad.

kittens i would try and change your nhs nuchal scan to after the FMC one. Mr s said that the team at FMC are all really good and that if there is a problem they would get you back in on a wed when the top guy is there so don't worry too much about the day of your scan.

Clabbage Sat 08-Sep-12 19:30:39

Sue I want to stamp my feet for you and shout it's not fair. I fervently hope that you can get confirmation that all will be ok asap, I just feel sad for you that yet another barrier has been put in your path.

Thanks for all the kind words and understanding from you all. Today wasn't great news. Slow heartbeat, slightly enlarged yolk sac and behind in dates is likely to end in mc according to Mr S. I guess it's what I expected. I now just have to wait for my body to decide what it's going to do. It's been a long day as I live in Devon so I drove up and back to NLC today, Just feel a bit numb right now. It will no doubt hit me soon.
havingkittens I hope you can get your nuchal scans sorted. It is great to see you looking ahead. I know every glance ahead is tempered with 'if I get there' but my goodness, you deserve to believe.
Abney hope you are getting on ok? Sorry to have caused you a few tears...but hope they mean those pregnancy hormones are on the rise!

Clabbage Sat 08-Sep-12 19:38:59

Iggi Really glad the counselling went well. I think if you get someone you click with, it can be fantastic. I have to confess to having had a fair amount and find it really useful. I used to be very cynical about it but have very much changed my view x

PQ77 Sat 08-Sep-12 21:03:13

sue so sorry to hear what's being going on. I do know of people who have had kidney problems picked up at 20 weeks and the pregnancy has gone on with a minor op to sort things out when the baby arrived. I think the fmc is the place to be so I will be thinking of you and hoping that you get some positive news this week.

I had a scan at fmc last Monday as my hospital wasn't offering me a growth scan (not indicated apparently...) and it was fine save for the fact that the Dr freaked us out a bit by saying I should be an inpatient and being monitored with daily scans sad. He was Greek and said that is the policy for PPROM in Greece - he then realised he'd upset us and said brightly that he was sure I'd be fine. I just have to accept that this is the policy in the uk and stick with the outpatient monitoring but it is doing my head in (and blood tests 4x week are doing my veins in...)

clabbage - thinking of you

kittens I am v nervous for you about your nuchal <helpful> . Am sure you'll work out the best dates to do things. It's just me but if dates were tricky I would be happy with any of the drs there doing the nt - if it was in any way borderline you could always ask prof nicolades to review the scans at his convenience? They take a million shots and store it on cd.

sarahs999 Sun 09-Sep-12 08:30:49

First things first - here's the list (sorry free <hangs head, shuffles feet>)

I've moved a couple of people - we don't seem to have heard from Hannah at all since her BFP so I've put her in 'status unknown'. I've added Buster and Abney (Abney Im guessing your gestation, feel free to repost the list with the right dates! ). Also moved up Colley who seriously must have had her baby by now. And I have moved myself into second trimester. Clabbage, wasn't sure where to put you - am sorry, don't want to be insensitive so please do add yourself to the list if you would like to.

The babies are arriving!

Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (EMCS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 – 39 weeks (CS) 14/5/12 7lbs.
Igggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy Thomas born (CS) at 38+6 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 40+0 - baby girl Amelia born 7/06/12 (CS) 7lbs
Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle), Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 - Baby boy Sebastian (ELCS) at 39 weeks 17/07/12 8.11 lbs.
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 40+1 wks EDD 24/07/12 Baby boy born 26th July, 7lbs 5. EMCS
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 38+4
coleyoz - V High NKC. DC#2, BFP cycle2, 41+1 - Baby born??!

* 3rd Trimester*

FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin, 38+2
Mercator - V High NKC, DC#2 37+4 (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks) ELCS 14/09/12
Hopefulfor2nd - High NKC - TTC#2. – 37+0
dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 37+0
PQ77 - TTC #2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) 33+0

2nd Trimester

HelterSkelter (IVF and immune therapy) -22+5
Suemays - TTC#2. DD, followed by 6mcs all 6-8 weeks. V High NKC. Superov but this BFP a natural one. (Pred & Hydroxychloroquine) 20+2
Bertha337 - High NKC, 1 ectopic, 2 mcs, est 16+2
GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, Pred from BFP. 16+1 Next scan 5th October
Delta10 - High VNKC, 5 mcs followed by DS Pred baby, 1 further mc. Est 16+1
sarahs999 - DC1 followed by 5 mcs, high NKC (Pred), plus clexane twice daily for Factor V Leiden and Prothrombin, aspirin, cyclogest, intralipids. 13+5

1st Trimester

Jemimapuddleduk (33). 3 prev mc's over last 2.5 years between 7-11. Not tested for NK but prescribed 20mg pred, fragmin, asprin and cyclogest on NHS. 12+5
HavingKittens, 4mcs, 2 TOP TS21, 7th pg, 5th SO Cycle, VHNKC, 40mg Pred, Hydroxy, Intralipids, etc. 9+1, next scan 4 Oct.
Buster - 4 mc. VHKC (pred 40mg, lipids, clexane, cyclogest,aspirin) 7+2

BFPs awaiting first scans
Abney (44), TTC#2, SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),- super ov 5+2

STATUS UNKNOWN
Hannah77 - DD born 2003, 3 losses 21 wks, 17wks, 7wks. BFP 25th July

TTC – ASSISTANCE - TTC 2ND or more

Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
Arianrhod - TTC#2 DD then 5 mcs 5-9 wks (2 on treatment), V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine) – super ov
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2 on Hydroxy, -super ov
LJ71 - two older DCs, mc on treatment. SO, pred, hydroxy

TTC – UNASSISTED - TTC 2ND or more

Iloveblue - under Prof Quenby for HNKC. 2 healthy boys, followed by 20 week loss, 2 early mcs, 15 week loss.
Willitbe - TTC#4 DS, DD, 1 mc, DS2, followed by 11mcs, (5-11 weeks). NKC not tested, TTC #4 (after m/c 12) Fertility cons prescribed pred.
Holldoll - TTC #2 High NKC - Pred, Cyclogest & aspirin. DS followed by 4 mcs, heart stopped around 5-6wk. Mc in March 2012 on treatment. Pred started at BFP.
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Mollieboo - 5 mcs, 1 DS (lost my little angel), high NKC - pred, intralipids, aspirin, clexane, cyclogest

TTC – ASSISTANCE - TTC 1st

Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, 2nd chemical on treatment/IVF - SO
duggs1976 - TTC#1 -4 mcs all 7-12 weeks. - TTC #1 – last chemical on treatment/IVF in April. SO
BellyD - V High NKC, MTHFR homo, TTC#1, 5mcs, SO, hydroxychloroquine
Carebear1 - V high NKC

TTC – UNASSISTED - TTC 1st

ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April - mc on treatment.
EchoJuliet, awaiting diagnosis, Preg 1 -MC 10 weeks (heartbeat stopped at 6w), mc 20w, mc at 8 weeks (heartbeat stopped at 6.5w)eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of IUI No BFP in 20+ cycles of trying
London - High NKC, April - mc on treatment.
picolina - TTC#1 4 mcs, all around 6 weeks. V High NKC MC on treatment
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
Gransol - Seven mcs - all losses between 6 & 7 weeks

sarahs999 Sun 09-Sep-12 09:53:47

OK, now that's out of the way will try to catch up with you all.

Sue so sorry to hear that your scan threw up problems. I know Mr Shehata is a bit gung ho sometimes but what he said has hopefully helped? Hope you get the FMC scan and some answers soon. A friend of mine also had this problem (her daughter is fine now) so I've seen firsthand how worrying it can be. So unfair- we of all people deserve a trouble-free ride once we get so far in our pgs.

Clabbage welcome and sorry to hear this pg is not going well. Your posts sound like you're coping well but we all know how devastating these bad scans are. Hope you get some answers sooner rather than later.

Kittens sorry about the nuchal. I've just gone through it all myself and was totally mental about it all so I completely sympathise. I decided that I wanted m nhs one first so that if it was all fine I didn't waste money at FMC (trying desperately to save for maternity now!). As it turned out I didn't go to FMC because I was happy with my results. I think I will always have them in the background though for whenever I'm not happy with what's going on at NHS.

PQ so great that you're still holding on. What's the deal with the worries about infection now? Does amniotic fluid replace itself over time? Do you have to take extra precautions or is it really just rest and wait? You must be so pleased to have got to 33 weeks.

Cornflakes you're being really brave. So sorry you have to go through this again - I hope it's quick and painless for you.

And Mercator you're so close to the goalpost! I know you must be terrified of the op but really I think it will fade into the background once you have that little baby in your arms. Will be watching out for your news (Realise there may be a little gap before you even think of turning on your computer!).

As for me, I had a quick scan and first meeting on Friday with my NHS consultant, who's been with me for years (through all the mcs). Baby looks good; I was most interested in what her take would be on it all as she actively discouraged me from looking into NKCs, saying, as so many NHS docs do, that it's unproven that steroids help etc etc blah blah. Well, the evidence was right in front of her! She was perfectly nice but didn't really go into it. I suppose she can't really. If pushed I'm sure her line would be 'well, you've been lucky'. Yeah, right. Come on lady.

I am passionate about writing about this for the paper and once the baby is here (fingers crossed, all those things) I will be asking her for an interview so I can really grill her about why the NHS isn't more helpful about pointing people in the right direction. It has ended up costing me thousands and thousands of pounds in fruitless treatments/ weight loss programs/ alternative medecine when the answer was out there all the time. Really, I mean how hard is it to form a protocol where you say, 'look we cant condone this approach on the NHS because there isn't a hard and fast scientific proof, but lots of women in your position have luck with the NKC theory, and here are the best doctors in the UK working on them.' St Mary's has a lot to answer for too as they are the ones (well, Prf Regan) who put up the loudest longest fight against NKCs. It was Dr Margara there who laughed in my face when I said I wanted to check my NKC levels and called people like Shehata 'charlatans' and said they were just moneygrabbers exploiting desperate women. That was in 2009 - at that point I'd been told St Marys were the best in the business when it came to recurrent miscarriage and so I believed everthing they said, and put the NKC theory out of my head. If I'd had a healthy disrespect for them and checked out Shehata then it would have saved me from three further miscarriages.

Anyway, rant over! I'm nearly at 14 weeks and this is my first day off the pred completely. My weaning has been absolutely fine - no side effects at all, which I was v pleased about (apart from the mentalling that the NKCs will attack again now I'm off the steroids...). Baby is measuring ahead of dates by about 5 days, which is a first for me - have become so used to those scans where all is behind, heart is slow etc. I'm finding this early second trimester frustrating though - I don't really show yet - only if you look really carefully can you see the shape of my abdomen has changed - and because my symptoms are fading away (thank god) I feel really precariously unpregnant. I know it's fairly normal at this stage but I can't wait til I can feel proper movements and know all is OK on a daily basis.

Next scan is at NLC on 19 Sept when I will be having intralipids too. I have scans pretty much every two weeks until 20 weeks (some NHS, some NLC) so I hope that will keep the mentalling at bay. Good luck to all those with scans/appts coming up.

LJ71 Mon 10-Sep-12 07:13:30

Morning everyone

Just a quick post to let you all know that I have been lurking, and my thoughts are with all of you going through tough times.

The appt with Mr S is Sat 22nd to get the results of the ERPC, so I guess I'm keeping quiet as I'm really not sure what we'll decide. Quite daunting when you know you may well make the decision to stop ttc, although that has it's positives. I really want to make my decision seperate from Mr S's advice, who I know will tell me to keep trying as there's always hope (unless there's a medical reason not to).

We really can't afford any more apart from anything else, and that's a horrible basis to have to make this decision on.

Big hugs to you all xx

Havingkittens Mon 10-Sep-12 08:47:58

Thanks for the thoughts on the Nuchal scan. I would love to save myself the money too but I also feel like I want the super detailed scan and be able to have the blood test/scan/results all on the same day so I can find out the odds and decide whether to have a CVS then and there. The two Nuchal scans I have had so far in the past, yes, they could pretty much tell straight away there was likely to be a problem just from the thick nuchal fold and I was "lucky" that they managed to get me in for a CVS that same day on both occasions (but that is not always the case). Even with having the CVS on the same day I still had to go through that agonising wait for 3 days for that horrible phone call to say "I'm sorry, your baby has Down's Syndrome (the second one obviously followed by, I can't believe this has happened to you again.)". I'm so petrified about this. Before I had the last 3 miscarriages my protocol was to go straight to CVS at 11.5wks on the NHS without even having the Nuchal but now that there is the added risk of miscarriage with it I am veering on trying to get as much info as I can before I decide whether to have a CVS and then, if I do, to have it done by the best person in the country with the best scanning equipment to guide them. So, if I go to the NHS scan first it sort of negates any of my reasons for going to the FMC. Also, the same goes for having a scan at the FMC on any day other than Wednesday if I'm going to have to wait to have anything reviewed.

Sue, I'm thinking of you today. I hope you get some positive answers.

PQ, you're doing really well. Hang in there!

LJ, sending you a big hug.

Havingkittens Mon 10-Sep-12 09:18:46

Phew, I've just managed to bring my FMC appointment forward to 26 September so I will be 11+4. I will try to move my NHS one to the following Monday, that way I can get a look in there and see that everything is OK afterwards in the event of having to have a CVS. I'm now wondering if it's really necessary to have a 10wk scan with Mr S, especially as it will most likely be closer to 10.5wks. If I could save myself that money it could help pay for my Nuchal!

Arianrhod Mon 10-Sep-12 10:22:21

kittens why not email Louise and see what she thinks - if you're having a scan (albeit a nuchal one, but that will show what you need for a 'normal' scan too) with the FMC perhaps they'd pass the results over to Mr S. I'm sure he would be happy with the results from the FMC.

Arianrhod Mon 10-Sep-12 10:25:41

sue Just wanted to say best of luck for today, hope things look a bit more positive. And that I know of another pregnant girl who was told at her 20 week scan that there was something wrong with one of her baby's kidneys; they monitored it closely and eventually it apparently 'righted itself'. Fingers crossed all goes well today.

Buster76 Mon 10-Sep-12 12:27:57

Hello!

Sorry to hear your news cornflakes and clabbage sad

sue I hope you get some reassurance from your scan today. Its really not fair to get this far and have that thrown at you. Like others have said you can manage perfectly well with only 1 kidney, I hope the other kidney is a healthy one. I have everything crossed for you.

kittens glad you got your scans sorted. These decisions are so tough especially after what you have been through before.

sarah thanks for doing the list, makes me feel a bit more positive seeing my name up there. Totally agree with you too about the NHS and NKC. I havent quite got there yet hmm but when I do have this baby (!!) I was going to write to the consultants I have seen. The whole process is scary and I have felt quite alone. In the fact of having to research, organise and pay of all your own treatment.

I had some pinky discharge yesterday sad Really hope its not the start of the end! Rang Louise today, she said to double up on progesterone and stop aspirin. Got scan and lipids Friday. Having scan locally Thursday to see if alls ok. It really doesnt get any easier!!
I was sooo constipated Saturday....I was late for work! Had to say my car wouldnt start, how embarassing?!

xxxx

Hello - hanging my head in shame here as I lost my place on a previous thread and then didn't mark it in the next one, so basically dropped out of touch. Sorry sad

I just wanted to let you know that baby James was born on the 29th August, weighing 6lb and 6oz at 36+5. I developed sudden severe pre-eclampsia so they induced me; a brilliant med-free birth which made up for feeling pretty dire for the last few weeks of the pregnancy. Sending sticky thoughts for those still in the scary, scary early days of pregnancy and congratulations to those whose babies have arrived! x x x x

sarahs999 Mon 10-Sep-12 17:00:58

COngrats frozen - how exciting! I sympathis with the severe pre-ec - I had it with my first (at 26 weeks!). It's not nice. But hopefully that's a fading memory and now you can concentrate on baby James!

mollieboo Mon 10-Sep-12 17:40:10

Hi everyone, haven’t posted for a few days so just wanted to say clabbage so sorry of the news re your scans, its just awful waiting for something to happen when you’ve been told news like that, hope you’re both holding up ok.

sue, am gutted to hear that you’re having to go through so much worry about your baby’s kidney. What an agonising time for you, am thinking of you lots and hope you have had some good news today.

cornflakes hope you’re doing ok, well as ok as you can be.

mercator exciting stuff but I can imagine its nervewracking. I had an emergency c section with no time to think about it, but I guess its very different knowing its coming but as sarah said, will be so worth it when you’ve got your little baby in your arms.

kittens glad you’ve got your nuchal scans sorted in your mind now. Sounds like a worrying time for you but at least you’ve got a plan in place now.

pq glad you’re holding on well and everything is going ok.

free lovely to hear from you. Being a new mum sounds exhausting when he only sleeps in his pram and not at home, but it’s a lovely exhausted I’m sure! Btw I was reading the first thread the other day and you said you interviewed Mr S for a documentary, has anything happened with it, did I miss it?

sarah great news on your scan. Also I think its brilliant that you’re going to write about NK Cells testing and treatment not being available on the NHS, even if its just to guide women like us in the right direction instead of us wasting time and going through heartache that could have been avoided.

lj big hugs to you too.

buster hope you’re ok, this game is hard work isn’t it.

frozen huge congrats on having baby James x

suemays Mon 10-Sep-12 18:05:22

Bad news from me as I went to the FMC today and they said the other kidney is also abnormal and the amniotic fluid is reduced. Looks like we are going to have to make the awful decision of ending the pregnancy as the baby won't make it. Seeing another specialist on wed and fri. To make it worse the baby looked perfect on screen and the right size. It's been really kicking me. Can't believe I will probably have to go through labour all for nothing. Popped in to see mr s and showed him the report and he said to prepare for the worst. Can't believe this is happening. I can't get my head around that my little perfect baby is going to die.

duggs1976 Mon 10-Sep-12 19:02:13

Oh sue I really am lost for words. How awful. Absolutely awful news. I don't think there are many words of comfort for you both right now. Is it just one of those terribly unlucky things that happen in life did the drs say? I can't get my head around it do have no idea where yours is at. X

digitalgirl Mon 10-Sep-12 19:09:08

Delurking to say how terribly terribly sorry I am for sue. Such an awful decision for you to make. I'm so sorry. I can't begin to imagine how you prepare yourself for something like this. But please know we're thinking of you. Xxx

mercator Mon 10-Sep-12 19:28:37

Sue. What can I say. I am just so very sorry to hear your sad news. I cannot imagine what you are going through right now. I am glad you will be seeing another specialist and I can only hope they offer you a glimmer of hope. My thoughts are with you at this time. X

mercator Mon 10-Sep-12 19:35:49

Frozen congratulations on the birth of James. Lovely to hear your news! I will try and update the list as my dates aren't quite right. Not that it really matters right now.

Kittens good luck with the scans

LJ could you see Mr S on the NHS if funds are running out?

Clabbage sorry to hear your news and hope you're doing as well as can be expected. Cornflakes same goes to you right now.

PQ hope alls well and lo is hanging in there.

Sarah thanks for updating.

Buster hope lo hangs in there. Thinking of you.

Sorry,if I've missed anyone. Just feel very sad for Sue right now. I am sure I speak for everyone when I say our thoughts are with you.

Clabbage Mon 10-Sep-12 19:41:49

sue I am so so sorry. I can't begin to imagine the anguish you must be feeling. I wish I could find some words of comfort but I know there are none, you and your family are held firmly in my thoughts x

iggi777 Mon 10-Sep-12 19:46:08

So sorry Sue, will pray for a miracle x

GreenOlives Mon 10-Sep-12 20:17:28

So sorry Sue life is so cruel sometimes. I don't know what else to say apart from I will hope for a miracle. Thinking of you.

GreenOlives Mon 10-Sep-12 20:25:27

cornflakes and clabbage I hope you are both doing as well as you can be in the circumstances.

frozen congratulations thanks lovely news!

buster hope spotting has stopped.

Sarah Yay for being pred free!

Sorry for not name checking everyone, am on phone and can't check back <have memory like a sieve at moment!> but love& luck to all. X

mollieboo Mon 10-Sep-12 20:35:21

sue im so so sorry and like the others am also praying for a miracle for you. Thinking of you lots xxx

batteryhen Mon 10-Sep-12 21:29:58

Sue, what dreadful news. I too will pray for a miracle. I can't believe this is happening to you sad much love and hugs xxx

ChoccyPud Mon 10-Sep-12 21:31:47

Oh Sue I'm so so sorry and heartbroken to read your news, after everything you've been through this year already, now this. I can't imagine what you're feeling right now, but just wanted to say that my thoughts are with you this week. X

Arianrhod Mon 10-Sep-12 21:35:20

sue I'm absolutely gutted for you, after everything you've been through I was really hoping this was it for you. Are they saying there's no hope at all, or is this what the specialist Wed & Fri will determine? I so hope there's another answer, something they think they can do for your wee babe. What an absolutely sh!tty thing to have happened, huge hugs to you and your DH.

iggi777 Mon 10-Sep-12 22:20:52

It's a good thing you are seeing the best in the business Sue, you will know you have had absolutely everything done that can be done. Stay strong. ()

holldoll Mon 10-Sep-12 22:47:50

De-lurking, Sue, I'm an do sorry to hear your news. I'm keeping fingers crossed that there is some hope left

PQ77 Tue 11-Sep-12 02:18:06

Oh sue what terrible news. I am so sad for you but also holding on to whatever hope there might be for a miracle. I have been, and will continue to, hold you and your precious one in my thoughts.

My little miracle man, Jonty (Jonathan) Edward arrived by c section at 4.34pm today. He was 4lb 15 / 2.23 kg a good size for 33 weeks but he looks pretty tiny to me! I haven't been able to hold him and have just visited him in nicu for 20 mins so far. They havent been able
to take him offthe ventilator just yet. Hoping to get to know him better tomorrow.

Am feeling fine after the c- section - merc you will breeze though! Inwas just so terrified that Jonty wouldn't breathe when they fished him out and it was such a relief to hear him cry.

sarahs999 Tue 11-Sep-12 03:45:42

Sue, I'm so so sorry. There are no words. Life is just unbearably cruel sometimes.

PQ, huge congratulations on the birth of baby Jonty. That's a good weight - hopefully he'll be breathing unaided soon and you can bring him home. Glad the c section went well. X

batteryhen Tue 11-Sep-12 04:29:03

PQ fab news xx is it me or is there a lot of boys being born on this thread?!

Sue I hope you get a little bit of rest tonight xx

LJ71 Tue 11-Sep-12 07:06:00

Sue - no idea where to even begin saying how sorry I feel. Huge hugs from us all xxxxxxx

Mercator I think I am too old, added to the fact that I have two (much older) children, and that counts me out of getting referred to Mr S on the NHS - but thank you for the thought.

mercator Tue 11-Sep-12 07:10:22

PQ Congratulations, such fabulous news and so pleased 'Jonty' made it safely into this world! You must be dying to hold him. Hope he makes rapid progress!

Sue thinking of you.

mercator Tue 11-Sep-12 07:15:32

Hi Everyone, I’ve updated the list from Sunday adding 2 days and correcting my own dates, whilst adding our latest arrivals Baby James and Jonty to the list of pred babies and moving Jemima up to the 2nd Trimester – Congrats Jemima. Please repost the list if your dates are incorrect adding to the days where applicable for those pg ladies on the list.

Tuesday, 11 September 2012

The babies are arriving!

Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (EMCS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 – 39 weeks (CS) 14/5/12 7lbs.
Igggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy Thomas born (CS) at 38+6 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 40+0 - baby girl Amelia born 7/06/12 (CS) 7lbs
Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle), Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 - Baby boy Sebastian (ELCS) at 39 weeks 17/07/12 8.11 lbs.
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 40+1 wks EDD 24/07/12 Baby boy born 26th July, 7lbs 5. EMCS
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 38+4
coleyoz - V High NKC. DC#2, BFP cycle2, 41+1 - Baby born??!
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin. Baby boy James born 29/08/12, 6lb and 6oz at 36+5
PQ77 - DC#2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) Jonty (Jonathan) Edward arrived by c section 10/09/12 4lb 15 / 2.23 kg 33+1 wks

3rd Trimester

Mercator - V High NKC, DC#2 38+4 (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks) ELCS (39 wks) 14/09/12
Hopefulfor2nd - High NKC - TTC#2. – 37+2 dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 37+2

2nd Trimester

HelterSkelter (IVF and immune therapy) 23 wks
Suemays - TTC#2. DD, followed by 6mcs all 6-8 weeks. V High NKC. Superov but this BFP a natural one. (Pred & Hydroxychloroquine) 20+4
Bertha337 - High NKC, 1 ectopic, 2 mcs, est 16+4
GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, Pred from BFP. 16+3 Next scan 5th October
Delta10 - High VNKC, 5 mcs followed by DS Pred baby, 1 further mc. Est 16+3
sarahs999 - DC1 followed by 5 mcs, high NKC (Pred), plus clexane twice daily for Factor V Leiden and Prothrombin, aspirin, cyclogest, intralipids. 14 wks
Jemimapuddleduk (33). 3 prev mc's over last 2.5 years between 7-11. Not tested for NK but prescribed 20mg pred, fragmin, asprin and cyclogest on NHS. 13 wks

1st Trimester

HavingKittens, 4mcs, 2 TOP TS21, 7th pg, 5th SO Cycle, VHNKC, 40mg Pred, Hydroxy, Intralipids, etc. 9+3, next scan 4 Oct.
Buster - 4 mc. VHKC (pred 40mg, lipids, clexane, cyclogest,aspirin) 7+4

BFPs awaiting first scans
Abney (44), TTC#2, SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),- super ov 5+4

STATUS UNKNOWN
Hannah77 - DD born 2003, 3 losses 21 wks, 17wks, 7wks. BFP 25th July

TTC – ASSISTANCE - TTC 2ND or more

Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
Arianrhod - TTC#2 DD then 5 mcs 5-9 wks (2 on treatment), V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine) – super ov
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2 on Hydroxy, -super ov
LJ71 - two older DCs, mc on treatment. SO, pred, hydroxy

TTC – UNASSISTED - TTC 2ND or more

Iloveblue - under Prof Quenby for HNKC. 2 healthy boys, followed by 20 week loss, 2 early mcs, 15 week loss.
Willitbe - TTC#4 DS, DD, 1 mc, DS2, followed by 11mcs, (5-11 weeks). NKC not tested, TTC #4 (after m/c 12) Fertility cons prescribed pred.
Holldoll - TTC #2 High NKC - Pred, Cyclogest & aspirin. DS followed by 4 mcs, heart stopped around 5-6wk. Mc in March 2012 on treatment. Pred started at BFP.
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Mollieboo - 5 mcs, 1 DS (lost my little angel), high NKC - pred, intralipids, aspirin, clexane, cyclogest

TTC – ASSISTANCE - TTC 1st

Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, 2nd chemical on treatment/IVF - SO
duggs1976 - TTC#1 -4 mcs all 7-12 weeks. - TTC #1 – last chemical on treatment/IVF in April. SO
BellyD - V High NKC, MTHFR homo, TTC#1, 5mcs, SO, hydroxychloroquine
Carebear1 - V high NKC

TTC – UNASSISTED - TTC 1st

ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April - mc on treatment.
EchoJuliet, awaiting diagnosis, Preg 1 -MC 10 weeks (heartbeat stopped at 6w), mc 20w, mc at 8 weeks (heartbeat stopped at 6.5w)eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of IUI No BFP in 20+ cycles of trying
London - High NKC, April - mc on treatment.
picolina - TTC#1 4 mcs, all around 6 weeks. V High NKC MC on treatment
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
Gransol - Seven mcs - all losses between 6 & 7 weeks

mercator Tue 11-Sep-12 07:20:21

PQ thanks for your thoughts re my own section, currently feeling pretty terrified and just hoping all is well with lo - I'm sadly not one of those earth mothers who find I can get excited until I know they have arrived safely into this world. It is comforting to know your section went well and amazed you were able to post so quickly! I hope you also make a speedy recovery and love the name 'Jonty'.

mollieboo Tue 11-Sep-12 07:33:45

pq huge congrats on having your baby boy jonty, wonderful news.

Yes there are lots of boys being born on here!

sue still thinking of you lots xx

iggi777 Tue 11-Sep-12 07:58:18

Pq congratulations, hope the days pass quickly till you get to take him home.
And just seen FrozenNorthPole, how lovely smile

Arianrhod Tue 11-Sep-12 09:45:24

pq and frozen, many congrats on your safe arrivals! pq hope your little Jonty can come off the ventilator very soon, and well done for hanging on in there!

sarahs999 Tue 11-Sep-12 10:01:45

Someone was saying to me the other day that among women who are more aware of their ov dates the rate of boys born is always much higher because we tend to have sex right around the ov time, which favors boy fetuses ( apparently the sperm that will make girls are slower, so you need to have sex several days before ov). Not sure how much truth there is in it but it did get me thinking about how many boys are being born on these threads and among my ov-watching friends.

digitalgirl Tue 11-Sep-12 10:27:12

pq massive congratulations on the arrival of Jonty. Fab weight for his 'age'. So pleased all went well in the end, hope you get to snuggle him soon. I've heard skin to skin can be an amazing thing to help premature babies get stronger.

frozen congratulations to you too! After all your worries you finally got there! Hope you're enjoying your babymoon too.

Glad all is ticking along for kittens too.

Franco is 5 months now and over 20lbs, sleep has gone out the window but ds1 has started school now so that should help. I still read this thread but must admit I find it hard to keep up. I'm so pleased free started it though and that you're all keeping it going. I still toy with the idea of one day having dc3, but this thread reminds me of what a struggle it has been and how much heartache I'll be exposing myself to again. I know for now that my priorities are the two I've got.

Havingkittens Tue 11-Sep-12 11:16:32

sue, you must be going through hell this week. I'm so sorry. I'm keeping my fingers crossed too that these last tests show some chance of hope. Thinking of you. x

PQ, Congratulations! You must be so relieved and over the moon. Like digi says, that's a pretty good weight for his age.

Big congratulations to frozen too. I'm glad you found us!

Actually, I was wondering, who else is missing who may not have found the new thread? Usually a PM goes around when a new thread starts but I don't think one did this time.

ChoccyPud Tue 11-Sep-12 11:44:54

Comgratulations PQ on the arrival of Jonty, fab name!! Hope you get to take him home soon. X

Also congratulations to Frozen. Great news.

Sue thinking of you.

BellyD Tue 11-Sep-12 12:10:59

On hols, so intermittent lurking.

Sue just wanted to add my thoughts and prayers to those of the others. Can't begin to express how sorry i am for you all, it is just so unfair. Massive hug to you.

Frozen and Pq many congrats on the arrival of your boys. Really hope Jonty can have a cuddle from his mummy soon.

Merc best of luck for Friday, totally understand why you are apprehensive but I am sure everything will be fine.

We've had a barrage of more tests and getting results of erpc from Mr S on the 20th so will bore you all with that when back from hols.

Waves to everyone else. Anyone heard from snoopy?

GreenOlives Tue 11-Sep-12 12:55:27

Massive congratulations PQ thanks Lovely news. I hope Jonty goes from strength to strength so that he is ready for home in a few weeks smile x

Havingkittens Tue 11-Sep-12 14:02:13

Just updating the list with revised scan dates for me.

Tuesday, 11 September 2012

The babies are arriving!

Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (EMCS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 – 39 weeks (CS) 14/5/12 7lbs.
Igggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy Thomas born (CS) at 38+6 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 40+0 - baby girl Amelia born 7/06/12 (CS) 7lbs
Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle), Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 - Baby boy Sebastian (ELCS) at 39 weeks 17/07/12 8.11 lbs.
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 40+1 wks EDD 24/07/12 Baby boy born 26th July, 7lbs 5. EMCS
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 38+4
coleyoz - V High NKC. DC#2, BFP cycle2, 41+1 - Baby born??!
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin. Baby boy James born 29/08/12, 6lb and 6oz at 36+5
PQ77 - DC#2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) Jonty (Jonathan) Edward arrived by c section 10/09/12 4lb 15 / 2.23 kg 33+1 wks

3rd Trimester

Mercator - V High NKC, DC#2 38+4 (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks) ELCS (39 wks) 14/09/12
Hopefulfor2nd - High NKC - TTC#2. – 37+2 dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 37+2

2nd Trimester

HelterSkelter (IVF and immune therapy) 23 wks
Suemays - TTC#2. DD, followed by 6mcs all 6-8 weeks. V High NKC. Superov but this BFP a natural one. (Pred & Hydroxychloroquine) 20+4
Bertha337 - High NKC, 1 ectopic, 2 mcs, est 16+4
GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, Pred from BFP. 16+3 Next scan 5th October
Delta10 - High VNKC, 5 mcs followed by DS Pred baby, 1 further mc. Est 16+3
sarahs999 - DC1 followed by 5 mcs, high NKC (Pred), plus clexane twice daily for Factor V Leiden and Prothrombin, aspirin, cyclogest, intralipids. 14 wks
Jemimapuddleduk (33). 3 prev mc's over last 2.5 years between 7-11. Not tested for NK but prescribed 20mg pred, fragmin, asprin and cyclogest on NHS. 13 wks

1st Trimester

HavingKittens, 4mcs, 2 TOP TS21, 7th pg, 5th SO Cycle, VHNKC, 40mg Pred, Hydroxy, Intralipids, etc. 9+3, next scan 18 Sept, Nuchal 26 Sept.
Buster - 4 mc. VHKC (pred 40mg, lipids, clexane, cyclogest,aspirin) 7+4

BFPs awaiting first scans
Abney (44), TTC#2, SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),- super ov 5+4

STATUS UNKNOWN
Hannah77 - DD born 2003, 3 losses 21 wks, 17wks, 7wks. BFP 25th July

TTC – ASSISTANCE - TTC 2ND or more

Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
Arianrhod - TTC#2 DD then 5 mcs 5-9 wks (2 on treatment), V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine) – super ov
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2 on Hydroxy, -super ov
LJ71 - two older DCs, mc on treatment. SO, pred, hydroxy

TTC – UNASSISTED - TTC 2ND or more

Iloveblue - under Prof Quenby for HNKC. 2 healthy boys, followed by 20 week loss, 2 early mcs, 15 week loss.
Willitbe - TTC#4 DS, DD, 1 mc, DS2, followed by 11mcs, (5-11 weeks). NKC not tested, TTC #4 (after m/c 12) Fertility cons prescribed pred.
Holldoll - TTC #2 High NKC - Pred, Cyclogest & aspirin. DS followed by 4 mcs, heart stopped around 5-6wk. Mc in March 2012 on treatment. Pred started at BFP.
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Mollieboo - 5 mcs, 1 DS (lost my little angel), high NKC - pred, intralipids, aspirin, clexane, cyclogest

TTC – ASSISTANCE - TTC 1st

Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, 2nd chemical on treatment/IVF - SO
duggs1976 - TTC#1 -4 mcs all 7-12 weeks. - TTC #1 – last chemical on treatment/IVF in April. SO
BellyD - V High NKC, MTHFR homo, TTC#1, 5mcs, SO, hydroxychloroquine
Carebear1 - V high NKC

TTC – UNASSISTED - TTC 1st

ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April - mc on treatment.
EchoJuliet, awaiting diagnosis, Preg 1 -MC 10 weeks (heartbeat stopped at 6w), mc 20w, mc at 8 weeks (heartbeat stopped at 6.5w)eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of IUI No BFP in 20+ cycles of trying
London - High NKC, April - mc on treatment.
picolina - TTC#1 4 mcs, all around 6 weeks. V High NKC MC on treatment
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
Gransol - Seven mcs - all losses between 6 & 7 weeks

freelancegirl Tue 11-Sep-12 15:09:00

First of all so so sorry to hear your news Sue. That truly is heartbreaking. I don't really know what to say. After everything you have been through it just seems so bloody unfair to get this far too. Words fail me, I am sorry.

It feels so good to see good news here and I do feel that there is more good news than bad news with the treatment over all - does everyone else? Frozen and PQ a huge congratulations from me too. Wow PQ, like Digi and myself I feel I have known you on these threads for quite a long time and finally here you are with that much longed for second child. Great news.

Merc woo hoo to Friday!! LIke PQ says the CS can go well. Mine would have been a lot easier to recover from if I hadn't ended up in hospital having an enema a few days later. My advice is start taking latulose before you have the section to keep everything moving!

That's an interesting theory about boys Sarah. Strange too that out of the 8 couples in my NCT group there has only been one girl. Also well said with your rant about NKC treatment! You have given me renewed energy in starting work again on the doc and am going to contact you soon about being my first Pred Thread interviewee. I need to get on with it! WHo asked about the documentary? Bascially am a journo and producer and so it felt natural for me to film my own experience through recurrent miscarriage and the treatment. Have interviewed Mr S a few times and now I need to get on and film some other case studies. I know a few other people on here were up for taking part too so will post again as soon as I start filming. Right now I am still in baby brain mode but have started doing a bit of work and really want to get on with it.

Great to hear from DIgi and wow to F being 5 months now. What do you mean the sleep thing doesn't miraculously get better at 12 weeks <hopes shattered emoticon> ?! Mind you, little S is 8 weeks today and for some reason is having a really sleepy day and not feeding much. Maybe he is just now out of the growth spurt and back to normal-baby levels? Am trying not to mental about it but of course it's not easy.

Lovely to see so many of you still popping in and keeping the thread going and woo hoo to the updating of the list! My work here is done... But I will be back of course.

mollieboo Tue 11-Sep-12 15:32:37

Hi free it was me asking about your documentary, sounds great I'll wait to hear more. Would be cool seeing success stories from the thread on film!

cartoonface Tue 11-Sep-12 17:59:23

Hi all I sort of introduced my self on the last thread but havent really posted. I got my diagnosis on sat. Very high nk cells. I'm waiting a couple of cycles then I shall begin TTC. I have a probably very stupid question! It says to start taking the pred at ovulation so is that when I first get a postitive ov stick or a day or two later. Really shouldve checked. I feel a bit daunted by it all but im sure its all fine. Im happy that for some reason he thinks I don't need the daily injections whoo!

MegMum25 Tue 11-Sep-12 21:04:53

cornflakes I am so very sorry that you are having to endue this again. Please go and see Anita a Zita west, without her I would not ave my kids. I would lay my life on that. She is a wonderful Irish lady like a little bird and full of hope and sense and positivity.
kittens woo hoo that's brilliant news on your scan, onwards upwards now.....
* clabbage* so sorry for your losses, that las thig o need to do is beat yourself l for feeling so sad just because you have already known the joy of a child - a life lost is tragic each and every time.
Not. Een here much ads geari up to try again and steeling myself for the stats ahead

Good luck to all. X

MegMum25 Tue 11-Sep-12 21:05:27

Cannot type on my iPad sorry

freelancegirl Tue 11-Sep-12 21:31:57

Hey Cartoon, welcome properly to the thread. Sorry to hear about your diagnosis but I hope you see it as a step in the direction of treatment. I remember being confused as to exactly when to start too but the general consensus is it is not an exact science and one or two days either side won't really make much difference. I think daily injections would only be if you have a clotting issue. are you having intralipids upon bfp too? good luck with the ttc!

Havingkittens Tue 11-Sep-12 21:44:30

Can anyone tell me how much the 5mg pred are on a private prescription please? I got my last prescription from St Helier on the NHS but, annoyingly they have given me more 25mg than I need and not enough 5mg pills considering I am meant to be weaning off. I'm trying to work out whether it's more economical to pay for them on a private prescription than to spend the money on petrol getting down to Carshalton to get them on a free prescription (my GP won't get involved anymore with my pred prescriptions)!

mercator Tue 11-Sep-12 22:17:48

welcome cartoon. I started the day after OV as indicated on a stick but only because I was a bit nervous taking the steroids.

Kitten, the pred is not expensive on pvt prescription at all just. Make sure you specifically ask for 5mg.

Sue hope all goes well for tomorrow and Friday.

Free good to hear things are going well. I do remember a distinct shift at 3 months and 6 months things seemed to get so much easier. Admittedly it depends on whether you have a sleeper or not. Which reminds me, this is dc 2 but still terrified. I think I'm just a born worrier.

Not sure who asked but I also wondered how snoopy was. If you ever pop in do let us know you're ok?!

cartoonface Wed 12-Sep-12 07:16:54

Thanks ladies. Yes I will be having the intralipids. Is it horrible? I'm abit scared of it all, the side effects etc

mollieboo Wed 12-Sep-12 07:18:28

Hi everyone, welcome cartoon.

I've been worrying and stressing, I started taking pred this cycle two days after positive opk, as I started temp charting too which just made it more complicated! So was worrying I took the pred one day too late but hopefully as free said one or two days won't matter.

I've always got pregnant within three cycles, usually on first go, so if I don't get pregnant on this third cycle I'll be worried that the pred is messing up my attempts as has happened with some others of you on here I think.

I'm also going to need pred on private prescription this time I think as i'm having difficulty getting it on nhs, so that's good its not too expensive.

Basically i'm stressing all of the time, about getting pregnant and worrying already about if the treatment is going to work. Its mental torture isn't it!

missbrightside Wed 12-Sep-12 08:42:48

Hello girls

Would you mind if I asked you a predisolone question ?

Am about to start a second IVF round. After the first one failed I had immune testing which showed (slightly) elevated NK cells. Am going to whole hog with medication (asprin, intralipids, clexane and predisolone).

It's the thought of steroids that really makes me shudder !! When I screwed my nose up at the Consultant at the mention of them he told me that the dosage would be low and I wouldn't be on them long enough to develop a big moon face or turn into a bodybuilder (or something to that effect !)

Our medication was delivered yesterday and out came one box of predisolone, and then another. 15 boxes (or 420 tablets later !) they were in a pile on the table. The literature suggests that I have to take 5 tablets a day (5mg tablets)

Anyhow - after all that wittering my question actually is - is that dosage normal ?????????? Seems a lot to me ............. !!

Thanks in advance xxx

sarahs999 Wed 12-Sep-12 09:08:11

Hi missbrightside, it's a perfectly normal dose. 25mg for high nkc, 40ml for v high nkc.

As for being nervous, that's perfectly normal too. We all were when we first started. Then three months later you'll be nervous to come off them! You've done the right thing by throwing all those meds at it - if nkcs are your problem there's no point spending all your money and emotion on ivf, as the nkcs will more than likely end the pregnancy. Instead of fearing the roids, see them as your savior! I'm currently 14 weeks pg after 5 mcs; prednisolone certainly helped me. Do ask away with any more questions, and good luck!

freelancegirl Wed 12-Sep-12 09:17:06

Hi miss brightside, welcome to the thread. Yes that is a normal dose. Most of us here are/were on the same - 25mg - with some, myself included, going up to 40mg on getting a positive pregnancy test. For some reason your doc has given you 25 mg but in 5 tablets, so it just seems like a lot.

This answers Mollie and Cartoon too really but don't worry about the steroids. They do come with some annoying side effects but you're hopefully on them for a relatively short amount of time. I did put on a few pounds as I found I was v hungry but it was only when on 40mg that I got a bit of moon face! And it does go very quickly when you stop taking it. I also got some aches and pains when weaning but again nothing really scary. Oh and at first you might not sleep v well. Other people find they feel great on them! Full of energy and things like allergies going.

Intralipids are rather relaxing, once you get the drip in. And that doesbt hurt either. There are no side effects, it just feels a bit surreal being wired up to a drip when not ill!

freelancegirl Wed 12-Sep-12 09:20:01

Crossed posts with Sarah - yes, once pregnant we've been nervous to come off them! But that has been fine too. And it will be handy that you have your tablets in 5mg form for tapering.

missbrightside Wed 12-Sep-12 10:16:37

Thank you so much for your responses. I feel a bit better about it all now ....... !

(I will let you know if I turn into Geoff Capes ..................... !!!)

cartoonface Wed 12-Sep-12 10:28:30

moonface! dear god, ok it will all be worth it. im so scared of mc again even though im on all these meds. weve always seemed to get pregnant quickly so hopefully will this time too!

mollieboo Wed 12-Sep-12 10:48:32

Has anyone had trouble getting pregnant when on pred when they didn't before they took it? The nurse at the clinic said it shouldn't prevent pregnancy if you take it after ovulation and only for 10 days and then stop if not pregnant but I think I have read of one or two saying it did stop them getting pregnant....

Hi missbrightside, its all good fun isn't it. Best of luck with your ivf treatment. I'm taking 10 tablets every morning at the moment with the pred, aspirin and vits but it'll all be worth it I'm sure! I was nervous taking steroids too but haven't had any side effects so try not to worry too much.

Arianrhod Wed 12-Sep-12 13:31:17

Rooting for sue today, hope the specialist gives you some hope ...

Clabbage Wed 12-Sep-12 14:30:58

Thinking of sue. Hoping beyond hope x

Loads of luck for Friday Merc. Hope it goes really smoothly.
Massive congratulations to PQ and frozen on the birth of your boys. The thread is definitely in roller coaster mode.

I have another scan on Fri. Its unlikely to be good news so will need to decide whether to have an ERPC, I have mc'd naturally 6 times but I dread that again, it's the when that's haunting at the moment. My oh is in the forces so largely absent so would like a little bit of control, particularly as I have to look after my little people. I'm aware that erpc's have their drawbacks...any thoughts?? Emotionally I'm in a rubbish place but I know you don't need that clarifying, we've all sadly been there.

cornflake how are you? We are in a similar place right now, I think?

On the steroid front, they work ok for me, more energy, my boys sleep appallingly so I actually cope a bit better. Asthma virtually gone and no hayfever (I'm normally hideously affected in early preg) I get awful tinnitus on them! The biggest downside for me is rage. Real blind rage.

ChoccyPud Wed 12-Sep-12 15:04:03

Clabbage what you're describing we know on here as Roid Rage smile

Talking of Pred helping with allergies/hayfever etc, I'm rather ironically now on 25 mg Pred to relieve my bad allergic reaction to Humira. Talk about going round in circles!! Will be interesting to see if just one dose has made any difference to my TNF alpha.

sue thinking of you today - wish there was something I could say to make it easier but just know you're very much in my thoughts.

suemays Wed 12-Sep-12 15:06:38

No hope for us as kidney damage is too severe in both kidneys. Probably won't be on here for a while but thanks for all your messages.

Arianrhod Wed 12-Sep-12 15:25:46

Oh sue, I'm so very sorry for the bad news. Life really is sh*tty, words fail me. Huge hugs, stay strong and take care of you.

Arianrhod Wed 12-Sep-12 15:26:31

choccy Now there's irony for you! Are you still going ahead with the second dose, if you had such a bad reaction to the first?

Abney Wed 12-Sep-12 15:48:06

Hi Kittens I think I paid approx £10 in boots for 1 months supply of pred. 40 mg.

Sue sorry to hear your news. I am thinking of you at this sad and anxious time.

PQ congratulations on the birth of your son and it sounds like a good weight.

Hello to everyone else. I am 5 weeks 1 day today and yesterday evening I had watery, pinkish red blood. This morning it wasn't there but it has come back this afternoon. I think this one is going to be doomed. I read loads of stories about other people having bleeds at 5 weeks so I am still clinging onto some hope that it will be OK but realistically I have seen it so many times before. I wish I could cry but I can't. Just really disappointed at the moment. At least I know I had every drug possible this time round. There always seems a run of good luck on here followed by a run of bad luck. I am so glad I can tell you how I feel as you are the only ones that truely knows how it feels.

ChoccyPud Wed 12-Sep-12 16:04:10

Abney I shan't tell you not to worry but it could be implantation or cyclogest.... Fingers crossed and feel free to mental on here, we have indeed all been there with good and bad results.

sue I'm so very sorry that's awful horrible news.

Ari nope. He won't risk it as another dose would likely give me an even worse reaction. Anaphylaxis is not somewhere I want to go...! The blood test is more just out of interest therefore. I'll have a chat with him tmrw and put a plan together to get started again. Back in the saddle soon either way smile and <shitscared emoticon>

igsisgreenngold Wed 12-Sep-12 16:04:24

I so wished Sue's news was going to be different.
Sometimes the unfairness of this all is overwhelming.

Arianrhod Wed 12-Sep-12 16:07:15

abney Without wishing to be personal, are you using the visitor's entrance for the cyclogest or the tradesman's? I've heard a few ladies saying they got an irritation with using the visitor's entrance for cyclogest, could it be that? Hang in there until you know one way or another, but if you are using that particular door for the cyclogest, perhaps swap to the other and see if that makes a difference?

choccy Here for handholding when you're ready. Well not while you're actually in the saddle, if you know what I mean ... ! ;)

Havingkittens Wed 12-Sep-12 16:14:21

Abney, I had a gush of watery pinkish blood quite soon after my BFP and was convinced it must've been a chemical. I hope all is ok for you.

Sue, I'm so so sorry. I will PM you in case you are not really looking in on the thread. I know this can be a difficult place to check in to with what you are going through. I just wanted you to know that I got an immense amount of support and empathy from the support threads on the Antenatal Test/Choices boards here. They really have been a lifesaver for me in the last few years. I'm sure you are absolutely reeling trying to get your head around what life has just thrown at you.

Thanks for the replied about the pred. A lovely "benefactor" has offered to send me some that she is not using smile.

Choccy, that really is ironic. Sorry to hear you've reacted badly to the Humira. I hope you're OK. Sounds like a nasty drug!

Ah yes, I'm very familiar with Roid Rage! Raaaarrrrghhhh! wink I'm pleased to say that I only have a very gentle case of moonface which probably came on about 8+5 and I am in the process of weaning off so hopefully that will deflate soon.

mollieboo Wed 12-Sep-12 16:22:11

sue so very sorry to hear your news. Big hugs xx

Arianrhod Wed 12-Sep-12 16:22:28

igsisgreenngold Is that you iggi???

Abney Wed 12-Sep-12 16:53:35

Hi all. Thanks for your kind words. Funny enough it is the kind words from others that make you want to burst into tears. I am guessing the visitors entrance is the front entrance and the tradesmans entrance is the back door. If so the cyclogest goes in the front entrance.
I have a pg test which I am going to use when I get home to see if it goes up a week. My motherinlaw will say to me when I get in. Are you OK? And I will say yes I am fine. If she looks closely she will see that I give my DS an extra tight squeeze. She won't sleep tonight if I tell her so there is no point until I know for sure. Kittens I remember you said you had pinky blood and I myself had a gush of pure red blood last time. The very next day I had a scan and could see a strong heartbeat (although I lost it in the end). Does anyone thing I should ask DR S for a scan tommorrow or Friday to put me out of my misery one way or another. Has anyone else done this before when they have had an early bleed? I usually go to the NHS but I think I would rather pay the money for someone who is more understanding.

mollieboo Wed 12-Sep-12 17:21:44

Hi abney, so sorry for you going through all this worry, its not fair is it. I would definitely get a scan somewhere, I know what you mean about having one with someone who understands your situation a lot more. I always use the CB digi pregnancy tests too when I'm pregnant to make sure the weeks go up, but they really can be mental torture. In my experience its best to use it with first morning pee instead of in the evening as if your pee is watered down then the results might upset you when there may be nothing wrong at all...x

digitalgirl Wed 12-Sep-12 19:01:11

So sorry Sue - completely and utterly unfair that this has happened. Wishing you much strength to get through the next few days, weeks, months.

batteryhen Wed 12-Sep-12 19:49:40

Sue I am so sad to hear your news. I can't imagine how you must feel. Take care, I hope you have plenty of support around you xx

igsisgreenngold Wed 12-Sep-12 20:04:23

Yes Arianrhod, sorry forgot I'd changed.
Abney could you get blood tests instead of a scan? They are more definitive at early stages.

Abney Wed 12-Sep-12 21:01:08

Hi Mollie thank you for the advice. If I hadn't of read your post I would have wasted and perhaps upset myself by doing the test tonight.

Igsis do you know where I would be able to get a blood test. I have had a bath tonight and can't feel anymore 'potential' bleeding and am too terrified to look at the moment. I will look in the morning after the test.

Sending lots of hugs to everyone who is going through a bad time at the moment.

Clabbage Wed 12-Sep-12 21:59:04

sue I am deeply sorry. Shocking, sad, horrendous news.

duggs1976 Wed 12-Sep-12 22:03:04

sue sending you all the strength that we can. Nothing else to say really.

As for early bleeding if we lived in the US we'd have a bEta test to measure the HCG to check its level and then a re test 2 days later to check it is rising adequately. So angry it isn't protocol here as it would save a hell of a lot of worry. Think has been said but u can have an HCG test for £50 at any private medical centre or clinic. Hope that helps a little x

Clabbage Wed 12-Sep-12 22:03:17

Abney I really hope that this is a blip and all will return to normal tomorrow. Loads of positive vibes heading your way.
Not sure who could do your bloods but I guess your EPU or Gp? X

GreenOlives Wed 12-Sep-12 22:23:24

Sue No words really but know that we are all thinking of you at this awful time sad

Abney I really hope that the bleeding stops and all is fine. I would definitely start using the Cyclogest in the other entrance in case that is the problem. I had a little bit of bleeding from the back entrance due to the cyclogest but thats far less scarier than from the front!

Clabbage All my miscarriages have been natural so I can't really advise on the ERPC option, it's a difficult one. Still hoping for a miracle for you. x

mollieboo Wed 12-Sep-12 22:25:13

Abney if I've been worried or bleeding my gp or my local epu have done beta hcg tests. My epu have been brilliant. I hope yours will be the same if you try them tomorrow, they're there to help people like us. Good luck for tomorrow x

Abney Thu 13-Sep-12 08:54:52

Hi Mollie I did the test this morning. Was dreading it saying 'not pregnant' but it hasa moved up to where it should be 3 plus. I have not gone into work today and I have only looked first thing and it was clear. I will just have to see how it goes today.

mollieboo Thu 13-Sep-12 10:58:13

Morning abney, you must be massively relieved that the test has gone up to 3+ and you're not having any more bleeding, that's great news. Yes chill out and look after yourself today x

mercator Thu 13-Sep-12 11:02:49

sue so dreadfully sorry. Sending you all my love, quite understand you don't want to be around for a while. I do hope you manage to get through this awful time. My thoughts are with you and your husband.

igsisgreenngold Thu 13-Sep-12 11:16:39

Abney, looking good! (I've had 2 mc where it didn't rise) I've had hcg test done both by my GP and my local epu. Bleeding is the thing that's made them check (I think because there's a small chance of ectopic).

Clabbage I found my one ERPC quite "easy" compared to the others: you can start to recover quicker as the physical part is over in a one-er.

Delta10 Thu 13-Sep-12 13:12:51

Hello to all, I haven't posted for ages but have tried to catch up on all the news.
Sue - I am reeling with shock, just too awful to imagine and words honestly do fail me. Sending love to you, your hubby and your daughter - may you somehow find the collective strength to recover in time xx
Abney - Many congratulations. I too was an early 'bleeder' - feared it was all over but amazingly kept seeing a heartbeat. I bled a number of times from 6+5 to about 10 weeks and all previous episodes meant bad news so am relieved to report it can be ok. The toilet trip dread was just dire. I am now officially 16+5 by my dates but all scans are dating me 5 days ahead at 17+3. I have everything crossed for you.
Kittens - Wow - fabulous news. I had my Nuchal at FMC and they were just fabulous - so thorough and I am going back there for my 20 week scan rather than NHS. Good luck with everything.
Free - can't believe your little one is 8 weeks already - that has flown (maybe not for you with the limited sleep!) Good luck with all the baby jabs etc.
Sarah, Olives, Bertha, Jemima - delighted to read that all progressing well so far (sorry if I've missed anyone - have only quickly caught up on the news so now trying to remember where everyone is at).
Congratulations for Jonty & James - we must be due a girl on here soon....???
Sending best wishes to everyone else - those going through good and bad times - hoping everyone is doing as well as can be expected

Pebbles73 Thu 13-Sep-12 14:04:32

I am still lurking very occasionaly and just wanted to say that Sue I am heartbroken for you and your family and can't beleive such a s***y thing has happened. Other than that I don't know what to say but hope you are being well looked after.

Sorry not to name check everyone but waves to all.

Abney Thu 13-Sep-12 16:43:23

Thank you Delta, Igsis, Mollie for your kind comments. If I make it to next Tuesday (6 weeks) I will do another pg test to see if it goes up again. I have checked 3 times today with the last one being 300 pm. So far it is clear thank heavens.

Mercator all the very best for tomorrow. I will be eagerly watching for any news.

duggs1976 Thu 13-Sep-12 19:13:17

Hello ladies just updating with a bit of what may be useful info for some struggling to get a bfp. After testing DNA fragmentation with dr gorgy back in may and my DH having 33% which put us with a 1% chance of a live birth poor fertility potential he was tested and treated for a minor infection ( asymptomatic) and cleared. Re test is supposed to be 3 mths after hardcore anti b finished as sperm reproduced every 90 days. Decided to do a mid way 1 and half month test just to see if any change and he got a 22% result which puts him in the good category. Anything under 15% fragmentation is excellent but generally not seen in top many 41 yr olds. smile so we r happy to have this news and gives us some hope that we might get a bfp one of these days. Test costs £250 wish we'd done it a year ago!

duggs1976 Thu 13-Sep-12 19:15:29

Oh forgot to add his 3 standard sperm
Analysis tests were good motility, count and volume so he was getting me pg it is the fragmentation that can cause miscarriages. Sneaky sperms
Looking good on the surface misleading us.

mollieboo Fri 14-Sep-12 09:18:21

Hi duggs, thanks for the info. Hope you don't mind me asking, did you conceive easily when you miscarried? I've always conceived easily before and am hoping its just a high nk cells problem. My hubby's sperm has never been tested but we did have our little boy so not sure if this would be a reason for my mcs. Good to know as much info as possible though in case pred doesn't work...

duggs1976 Fri 14-Sep-12 12:05:27

Not really easily -6 mths, 6 mths, 3 mths then introduce pred and no natural bfp for over a year?! One icsi bfp which went onto miscarry on pred, intrallipids, clexane which made me think to look at other factors. Just a thought for those long timers like me?!

Clabbage Fri 14-Sep-12 16:21:37

Hi to all.
No miracle from me, started to bleed last night and no HB at scan today. Am guessing I will have little choice but to mc naturally as I am unlikely to get through to Monday. sad. utterly gutted even though I expected it.
Sorry for no personals, but hoping that Mercator is keeping the flag flying with a new pred baby in her arms x

sarahs999 Fri 14-Sep-12 16:26:31

So sorry Clabbage. I hope for your sake that it is over quicky and painlessly.

mollieboo Fri 14-Sep-12 16:57:00

Hi clabbage, sorry to hear your news, thinking of you x

Havingkittens Fri 14-Sep-12 17:35:34

So sorry clabbage x

BellyD Fri 14-Sep-12 19:40:24

Sad news Clabbage, thinking of you.x

Hoping all went smoothly for Merc.

suemays Fri 14-Sep-12 21:12:10

Still waiting for answers on how bad the kidney damage is a week after I had my 20 week scan. Nobody will tell us for sure what the outcome could be for our little one when it is born. We dont know whether it could face a life on dialysis and be in constant pain or if the lungs are so damaged that it can't breathe at birth or that it will have kidney problems that are non life threatening. We know one of the kidneys is completely dead and that the other one is not functioning 100% but we dont know to what extent the damage is. All we have been told is that the prognosis is poor and that the baby will have some kind of kidney damage. We dont know what that could involve for the baby.

We have been referred to a paediatrician next Tues at John Radcliffe in Oxford but they probably wont be able to tell us what damage has been done, only give us scenarios of life for people on dialysis etc.

I know that it is more likely that the baby could die at birth or face a life in pain and under constant hospital care but a tiny part of me is wondering 'what if mine is the miracle baby you hear about that beat all the odds'? My husband thinks I am clutching at straws and delaying the inevitable. Maybe I am but I feel like I am deciding whether to turn off the life support machine on my baby. I also cant face having to give birth to a baby that I should be taking home with me instead of it being killed. At the last scan we watched it moving around and it even yawned and stretched like there was nothing wrong with it, I just can't understand how it can be so ill yet look so perfect. All I want to do is protect and help it yet I am so helpless.

At the moment I feel like I am living in a bubble. I lie in bed feeling the baby living inside me and pretend that all is OK and that someone will either tell me this has all been a dream or that a medical expert will say all the others have got it wrong and that the baby will lead a normal life.

After all I have been through to get to this stage I cant believe I am having to make the hardest decision in my life. I wish that it had been different at the 20 week scan and that it had died so that at least I wouldnt have to make this decision. I never thought I would say this after all the miscarriages and I apologise to anyone who might be offended by this. This will haunt me for the rest of my life because there is no clearcut answer from the experts. My husband wants to terminate it as he says that even if they give us a 90% chance it would be OK that is still not high enough odds for him as he doesnt want to gamble his future and let if affect the rest of our family. He just wants to get this over with and try again.

I have been talking to other ladies on threads who have kids with kidney problems with varying degrees of illness to get an idea on how life could be. I know it would impact on my DD1 so much that she would never have a normal life either if the LO had to go on dialysis etc and I need to think of her with my DH working away so much. It would be awful too if the LO only lived for a few years and we then had to face saying goodbye to it. I also cant bear to bring a child into the world that could potentially face a life of pain or being fed through a tube and not lead a 'normal' life.

I know nobody can make the decision for me but I just felt like I had to talk to you all as I have no idea where to turn. I cant eat, sleep or do anything and feel like I am being tortured constantly. Its the only time I wish this had ended in miscarriage and now I can appreciate what people mean when they say its better that a pregnancy ended if there was something wrong with the baby. Again I apologise if this comment offends or upsets anyone on here who is going through another miscarriage as any loss is tragic.

Abney Fri 14-Sep-12 21:40:43

Dear Sue your story is absolutely heartbreaking. I think you need to wait until Tuesday for more 'expert' opinions. The fact that you have come so far must make it so difficult for you to come to a decision. Have the doctors advised you to end the pregnancy or are they leaving it to you? Either way the fact that you are being referred still gives a bit of hope doesn't it? I am thinking of you and praying that you are given some hope on Tuesday or at least a worse case scenario so that you can make a decision based more on facts.

Abney Fri 14-Sep-12 21:48:59

Dear Clabbage so sorry to hear your sad news as well. It doesn't matter if you expect it or not a loss is still a loss and I think we can all share your pain. Sometimes this thread is so damn heartbreaking. I hope you recover quickly from this. It's just such a rollercoaster of emotions. Sending you a big hug.

freelancegirl Fri 14-Sep-12 21:59:27

Sue I am so pleased you still feel you can come here and talk to us but so sad for everything you are going through. I really hope you get some more positive answers on Tuesday, but like you said they might not be able to tell you exactly how much damage there is to the second kidney. Is that something they wouldn't be able to find out unless a baby was born? It's so bloody heartbreaking hearing how you can see it moving. I can't imagine what you must be going through and yes I agree with you about the miscarriages - this is really far far worse, despite miscarriages being so heartbreaking too.

So sad to hear about your news too Clabbage. It must have been a dreadful dreadful scan today.

You're right - it's Friday and that means that merc must have had the baby. I can't wait to here from her. I also think about Charlie, Coconut, Stogan, Comedy and others and wonder how they are getting on. As busy as me I imagine! We do get rare drop ins from Digi and Battery.

I too am wondering how Snoopy is and how the treatment is going. Snoopy if you are ever lurking please do let us know.

In the meantime so so sorry again for both Sue and Clabbage. If we can help in anyway do let us know. Sue - hope you get some news that will help you in one way or another on Tuesday although I realise it's a rock and hard place situation.

igsisgreenngold Fri 14-Sep-12 22:16:37

Sorry Clabbage. It's a shame that all we can wish you is that it is over quickly, but I do hope that. Then it's possible to start healing.

Sue I think all you can do is what you have done re the miscarriage/nkc situation - get all the information you can. I assume you can take whatever time you need to decide. Are there charities that work with kidney disorders you could contact? It does sound like there is still some hope, I would find it so hard to give up on a baby you have struggled so much for already. But that is talking with my heart, not my head, as you say you have others to think of too. There must be a lot of experience amongst mumsnetters about life with a (potentially) disabled child, as well as information about choosing to end the pregnancy. I hope you get all the information you need quickly and the support to see the way forward.

mercator Sat 15-Sep-12 04:52:56

clabbage so sorry to hear your scan news. I hope you get through the weekend ok.

Sue it sounds like you need to explore all options available to you and understand what the prognosis is for your baby. Sounds like you're doing all the right things. Sending you lots of love and hope youi can work your way through this painful time!

mercator Sat 15-Sep-12 04:58:21

Our beautiful daughter arrived safely yesterday at 12:10pm, at 7llb 2 which is a fair bit small than our first little girl born a wk earlier. The elcs was tougher emotionally because I'd built it up but think I'll recover better this time as feel miuch better physically. She is adorable and teeny tiny. Still deciding on names, but will update when we have one, another miracle baby for mr S and Louise!

cartoonface Sat 15-Sep-12 07:56:48

Just catching up on the last few days, I don't know you all very well yet but felt that I couldn't just read and not say anything.
sue I have tears in my eyes reading your posts I cannot imagine how difficult things are for you at this time especially after, I assume, it was not an easy ride to get there in the first place. Life can be so unfair.
And for clabbage too I'm sorry to read things haven't worked out for you eith.er

cartoonface Sat 15-Sep-12 07:58:05

mercator lovely to see some happy news there. Congratulations!

duggs1976 Sat 15-Sep-12 08:05:41

Congratulations merc smile some lovely news. Well done honey. Do let us know her name when she has one won't you?!

sue the curse of all this information that we have access to these days. Sometimes I sit and think about how life would be if we knew less about what could be or happen to us and it just happened and as humans we would deal with whatever it was as best we knew how. It is the weak position such strong ladies like us are put in because we've been battling for so long getting to this stage you must have nothing left inside you to fight back with ?? Obviously we are all unique people, but the empathy that runs through this thread at times can send a shiver down any one as we read of an unbelievable heart wrenching stories. It doesn't seem real because I guess, the parental deaths, cancer, miscarriages, infertility and stories like yours - although part of life - are not usually witnessed so close up. The thoughts and feelings we share on here make this a unique place to be able to share and empathise but does all feel magnified and intensified and pretty bewildered at times. It is like you briefly jump into the place of the person at the time in your head and quickly jump back because it is too horrific to be there? All that we do know is the human mind and soul seems to have some innate capacity to keep going, some survival mechanism. Like a marathon runner. You will keep going and at some point the place you get to will be a little less dark a place than you are now. Kind of like doing time. We all have our versions of it. . . So we are sending you encouragement to just push on and what ever path you end up down you will have made the best decision you could at the time. Huge hug to you sue you will get through -this we are designed to somehow. X

Abney Sat 15-Sep-12 08:12:19

Mercator Congratulations on the birth of your daughter. Enjoy every second.

BellyD Sat 15-Sep-12 08:36:00

Congratulations merc and mr merc wonderful news. A little girl to balance out the boys! Hope you are both getting on well. grin x

BellyD Sat 15-Sep-12 08:40:22

Sue you are so brave. I am glad you feel you can share your anguish with us, but I wish that you didn't have to feel it at all. When you see the specialist next week I hope they can give you some insight to help you make whatever decision is best for you all. You are doing absolutely the right thing, arming yourself with as much info as you can before you decide, but it must be impossibly hard. We will be here for as much hand holding as you need. Thinking of you and your family xx

sarahs999 Sat 15-Sep-12 09:13:48

Congrats Mercator! Wonderful news. Will update the list when I'm not on my phone (or maybe some other kind soul can do it).

Sue you and your dilemma are on my mind constantly. It must be utterly impossible especially when your dh is pulling so hard in one direction. Has anyone ever talked about whether kidney transplants are an option - either early on after birth or when baby is older? I think if I knew that that was an option and might lead to a more normal, stable life for the whole family it would colour things differently. But as you haven't mentioned that I wonder if that all just wishful thinking.

snoopygirl Sat 15-Sep-12 15:06:11

Hello lovely ladies - thank you for thinking of me.
Oh my where do I begin........

Sue I am so very sorry you are having to endure this. for the first time in a couple of months I popped in to see the news last week and was so happy for you. And now this. I cannot imagine how your feeling, numb no doubt and on the floor with worry. I am thinking of you and hope with all my heart that things will be clearer on Tuesday and that you can make a decision based on what's best for you and your family.

I put a post on a BC website yesterday and this is how I feel at the moment after FINISHING CHEMO!!!!!!!!!!!!!!!!!

"Wow don't know how or if I can express what I feel tonight. My words may be inadequate but all I know is tonight I just have tears rolling down my face with relief.
Relief chemo is over. I had my last Chemo (3 fec/3tax) last Thursday and I am a week on. I thought the emotions might spill over as I've been quite together for the duration of the chemo. The first time I have spoken with BC nurse was the other day.I didnt' think I needed her, I thought I was tough. Whereas actually it was quite nice to hear her soothing tones over the phone, sympathising with my stupid worries over surgery to come and radiotherapy. Saying that it's taken a week to get hold of her.
What i'm trying to say is I feel free. Free of drugs. Free of injections (last one last night). Free of picc lines. Free of being wiped out. Free of painkillers. Free of being bound to my bed. I never want to feel vunerable again. Ever. It's felt like being imprisoned since May.
I went out on my own this afternoon, no chaperone in case I felt unwell. Just me in my car with music really loud. Do you know how normal I felt? I think only those that have been through this will. it was like a revelation, kind of rejoining the human race!

All the cliches are true:

I will slow down, live for the moment, appreciate what I've got and take time to enjoy it.
I will never take my health forgranted again.
I will be forever thankful to my Mum and Stepfather whom have done everything I have needed and been there there without question.
I will cherish my darling boy who has just taken all this in his stride.
I will hold dear my husband and friends who have just kept things normal for me.

And thanks to my gorgeous kittycat whom seems to have a sixth sense of when i'm down and has kept me amused through all this. He is now a leggy rascal who has grown up whilst I've been in bed the last few months. I never knew pets could be so comforting and perceptive!

This is starting to sound like an Oscars acceptance speech so i'll wrap it up!
I know I am not out of the woods yet. I still have to wait for the final results after surgery but I feel the debilitating bit is over and i can only feel physically better day by day from now on.
I feel so happy to have got through it and proud of myself and can't wait to restart my life (Someone warn me if this is some kinda post chemo euphoric afterglow!)
thanks for reading hope I haven't bored everyone stupid."
Cxx^

Sorry about the massive post but this describes how I am feeling now. I now have surgery on Oct 4th which I am lucky at the moment to be getting away with a Lumpectomy as the chemo has shrunk the lump by under half and surgeon said I was in the 1/3 of women who respond that well. But I am not ruling out a Mastectomy yet as it depends on the testing of products afterwards. but nothing nasty showing on the MRI I had last week so hopefully be ok. Then it's onto Radiotherapy everyday for 3-4 weeks. But this is all going to be a breeze compared to chemo. I've done the worst bit. It's been gruelling and the most frightening experience I have ever had.....but I've done it!!

anyway enough about me how are you all???

Free,PQ,Merc Congratulations!! I know I've missed a couple of babies in there forgive me. You did it and I hope it gives hope to the others ladies who are still trying.
Hey until the miscarriage thing I had never posted online about anything. But one thing is for sure there are some amazingly strong, articulate and sassy women out there and that includes all of you and I feel honoured to have got to know you.
Jeez just off for another blub!! grin

Buster76 Sat 15-Sep-12 16:42:43

Where do I start?!
sue Life is so very very cruel sometimes sad Like others have said hopefully the experts in Oxford can supply you with more information. How the hell can anyone make that decision?! Feeling and seeing him move and looking so perfect. There must be something they can do!!! Thinking of you x

clabbage sorry to hear your news sad keep strong x

merc congratulatioons!!! She sounds perfik!!

xx

Buster76 Sat 15-Sep-12 16:47:34

Lovely to hear from you snoopy
What an amazing post! I think I need a blub now!
These life changing events really do put things in perspective.

xx

digitalgirl Sat 15-Sep-12 16:54:39

sue through all your heartache and pain it does sound like you are doing all the right things at the moment. Looking into life on dialysis, considering DD. But it must be incredibly difficult not knowing exactly the prognosis. How anyone can be expected to make a decision on percentages is beyond me. I wish I had the right words of advice and comfort for you. Possibly a pointless piece of info but my dad only has one kidney, seems he was born with only one and it wasn't picked up till he was in his fifties when he went for an unrelated scan.

digitalgirl Sat 15-Sep-12 17:00:37

snoopy so great to hear from you, thank you for your post! Wonderful wonderful news that you're through the worst of the treatment. You must feel like a superwoman to have endured all that. Your dh and family must be so so relieved that things are looking so positive. Enjoy your post-chemo high!!!

digitalgirl Sat 15-Sep-12 17:03:27

And finally mercator congratulations on the birth of your little dd!! Enjoy those hard earned snuggles! Xxx

Havingkittens Sat 15-Sep-12 17:43:26

mercator, congratulation on your new arrival! Ha, I was beginning to think we were only producing boys on this thread!

snoopy, your post moved me to tears! I'm so pleased you have got through this and are now free to enjoy your life again. You must feel like you're floating a couple of inches off the ground at the moment. I can well believe what comfort and light relief your lovely kitty must've brought you when you were stuck in bed feeling miserable too. His arrival was perfect timing. Thanks so much for sending the pred by the way, it arrived this morning.

sue, you continue to be in my thoughts. I've just finished work and am heading out but when I have some proper time I will PM you. x

mollieboo Sun 16-Sep-12 11:34:58

Hello everyone

sue I’m so sorry for everything you are going through. Its so difficult not being told what to do and having to make a choice when you don’t even know exactly what you’re facing. What a terrible time for you both. I completely understand why you wish the choice had been taken away from you instead of going through this. Wishing you both much love and strength, I hope you get to know more on Tuesday.

mercator huge congratulations on the birth of your baby girl, such lovely news. Love to you all.

snoopy what wonderful news, what an amazing post. Enjoy every second of your new life.

clabbage hope you are holding up ok this weekend.

What an emotional thread this weekend, hello and love to all xx

willitbe Sun 16-Sep-12 14:43:28

PQ - hope you and little Jonty are doing really well. I thought of you today having heard from my firend who had the brocken waters since 22 weeks. See had a lovely little boy yesterday at 33weeks+0, just five days after you. She said the little lad is doing ok, but that she has not been able to go to see him yet, I hope they get her to him today. My oldest nephew was born at 33 weeks 22years ago, he is a fantastic young man now and very quickly it is hard to believe they are a premi baby. Any way I hope you and your young man are ok.

cartoonface Mon 17-Sep-12 11:06:22

Question. Would u want to be pregnant and going through all this treatment on ur wedding day? Would it be a completely bad idea? Be grateful for anyone's thoughts on this

sarahs999 Mon 17-Sep-12 11:29:31

Well, I wouldn't want to be anywhere in my first trimester while getting married, treatment or not! It's bad enough with morning sickness and tiredness.

On the other hand, depends on your circumstances. If you're as old as me nothing would stop me getting on with it!

mollieboo Mon 17-Sep-12 11:32:41

Hi cartoon, how are you? Huge congrats if you're getting married. How are you doing on the steroids? Sorry I can't remember what stage you're at of treatment at the moment...

I'm on my third round of steroids and am feeling very wound up and emotional. Am testing this week and so far negative but am only 9dpo, but am not holding out much hope. Am feeling very depressed and desperate for a baby. Usually pregnant very quickly so am getting worried now that the steroids are affecting ovulation.

Re your wedding day, are you worried that you'll be worried about things going wrong or struggling on your meds v being pregnant making you really happy on your wedding day? Its a tough one for people like us, sorry I haven't been much help have I!

Hello everyone else, hope you're all doing ok...

x

Havingkittens Mon 17-Sep-12 11:46:20

Hi cartoonface, Personally I don't think I would want to be. In fact if I had the choice I'd probably take the month off taking the steroids and hold off on TTC that month. Each, on their own have a huge effect on how you feel physically and emotionally so combined you just don't know how you would be on the day. The pred makes me very edgy and agitated and also really wobbly and shaky and has given me some absolutely cracking headaches that painkillers won't shift. Pregnancy also makes me feel shaky and tired, and you don't know if you will have MS or not. All in all, not the best recipe for a wonderful wedding day!

Then again, I would have the age issue like sarah so it would depend on how many months it would mean having to put it off. Mind you, I'm a confirmed "living in sin" kind of girl for now so it wouldn't be an issue.

cartoonface Mon 17-Sep-12 12:07:48

Thanks for answering! I know it probably sounds very trivial but I'm really struggling. We booked our wedding for may next year. We did it after the first mc to give us something to focus ono (at the time) squeezed in a baby fingers crossed. I got pregnant in may but lost that one too. I have not yet started on the roids. I'm 27 and we fell pregnant quite quickly both times. Waiting until may just seems such a long way off. So wondering whether to just wait a few months and start TTC in say Jan so I won't be too far gone. But as has been pointed out being earlier than 12wks could have me feeling not at my best shall we say. Im even thinking of bringing the wedding forward to December this year so its not as long to wait. I'm finding it hard to be patient after 2 mcs and particularly now I have the treatment plan I kind of want to just get on with it.

mollieboo Mon 17-Sep-12 12:22:14

cartoon I can understand just wanting to get on with it esp when you've had mcs. Moving the wedding forward to December sounds like a good plan to me, you could get totally excited about the wedding and then start again on the treatment plan straight afterwards...

I have total roid rage, I'm not used to it as have been ok for the past two cycles but feel horrendous this cycle. Am hoping its because I'm pregnant but am really not holding out much hope. kittens I'm feeling just like you described so its good to know that's normal on the pred.

abney if you're on here is everything ok with you now?

picolina123 Mon 17-Sep-12 13:27:58

sue nothing i say can help i know, i was shocked when i read your post from friday, I'm so so sorry you and your husband have been put in this position , what ever you decide no one will judge and we are all hoping for the best.
* snoopy* you are my hero , thank you for reminding us to not take everything for granted and to count our blessing , i will say a prayer for you that everything is back to normal asap.

CateN Mon 17-Sep-12 13:34:50

Hi everyone,

Wow, this thread is some emotional reading! The care you all have for each other really shines through. What a wonderful example of how online forums can really work to be supportive and a mine of information. I would like to add my thoughts to those going through difficult times and decisions and congratulations to those with recent happy news.

I am 7 and a bit weeks pregnant at the moment after having had 6 miscarriages since my daughter was born in May 2008. All of these were very early, missed miscarriages (no fetal pole seen on scans) except for the first one which got a little further.

I am seeing Mr Shehata at New Life in Epsom. We have had 2 scans so far which show a heartbeat so we are really hoping that the natural killer cell route is working. Mine were diagnosed very high so I am taking 40 mg prednisolone and will be having second intralipid transfusion next week - if a scan shows that all is still progressing.

Although I am feeling so much more positive than I have before, it is still a difficult road to tread, especially since I am 41 now so all the extra risks that brings, so would really like to join this thread smile

Cate

GreenOlives Mon 17-Sep-12 13:46:57

Sue It is such an awful position to be in and it must be so hard when DH has very clear ideas about what he thinks is the best option. As others have said you just need to be armed with as much information as possible before you reach any conclusions about the way forward. I hope tomorrow's appt helps. Thinking of you. X

Snoopy Your post moved me to tears too - you are an amazing woman and Im so glad the chemotherapy is over. In my job (A&E nurse) I am constantly reminded
how precious life is and how we should all embrace our blessings. It sounds like you and your family (inc kitty Snoopy!) have pulled together through this awful time and I have no doubt this will continue through the rest of your treatment. I wish you all the love and luck in the world, please do drop in from time to time and let us know how you're doing.X

Things appear to be going well here. I have been listening with a doppler every few days and baby's HB always puts a big grin on my face! Still suffering with sickness but hoping that is going to fade away soon! Have quite a sizeable bump already shock so have given in to the mat clothes - anything to be comfortable!

GreenOlives Mon 17-Sep-12 13:50:17

X-posts Cate Welcome to the thread! Sorry to hear about your losses but congratulations on your pregnancy - you're in the right place for hand holding and advice! Is this your first pregnancy on treatment?

Arianrhod Mon 17-Sep-12 14:03:52

sue My heart really goes out to you, it's such an awful situation you're facing. I understand what your DH is saying but at the same time, I so totally understand your thoughts around what if your baby actually ends up ok with the one kidney. After all, we only need one kidney to live perfectly happily and normally, so it really depends on how much damage is done to the other kidney and how much perhaps it will repair/sort itself out between now and when it's born. I have read so many stories of people being given impossible odds on the BC nuchal/other tests board but then ending up with perfectly healthy babies that I honestly believe anything is possible. I so hope the guys at the John Radcliffe can give you some hope, and please do come here to rant/vent/share, we're all here for you. Huge hugs for you and your wee babe.

snoopy So very happy to hear from you, and what excellent news too, I'm so pleased for you! Now take it easy, one day at a time, look after yourself and please don't be a stranger, I'm certain we'd all like to keep right on hearing from you!

cate A big welcome to you, so sorry for your losses and fingers crossed for the health of your new pregnancy. Successes on Mr S's plan are right here to be seen, let's hope you're one of them!

cartoon I have to say if it were my own wedding I wouldn't stop trying for a baby, but then you have to understand that I have an age factor to take into account. I understand the need for a baby, but if time is thankfully on your side, then as kittens says both weddings and TTC (especially on this treatment) can take it out of you emotionally. Ultimately it's down to what you feel you can handle, best of luck in whatever you choose!

Olives your comment about your doppler also brought a smile to my face. So pleased things are going well for you!

/waves to everyone else, supposed to be working but having a quick read of MN, of course smile

sarahs999 Mon 17-Sep-12 15:40:56

Welcome Cate. I'm 41 too, 5 mcs, and currently 15 weeks pg. Congratulations!

Pebbles73 Mon 17-Sep-12 15:47:30

Just popping in to say snoopy your post bought many tests to my eyes and was so lovely to heard from you. I am so glad you are over the worst bit and wishing you lots of luck with the rest of the treatment. You are incredibly brave and strong and should be very proud of yourself. Xxx

Abney Mon 17-Sep-12 16:25:59

Hi Mollieboo I am fine at the moment but still terrified. I haven't seen anything since last Thursday evening ie a bit of pink the size of a penny. It was a bit more than that on the Wednesday hence my despair. Just taking 1 day at a time.

Cate welcome to the thread and sad to see how many losses you have had. I guess as you have had a DD each mc after was a terrible shock. Fingers crossed for this one.

Snoopy really good to hear from you and so pleased your treatment (Chemo) has ended. When people say that they are having chemo I don't think I
Ever appreciated how awful it must be for them. Let's hope that you do get back to 'normality' as quicky as possible. It sounds like everyone is taking really good care of you.

Cartoon I ended up getting married in between MC's. I booked everything within 3 months and was married within 3 months. This was the only way so that it did not get in the way of trying. You are so young you have plenty of time on your side. I think the best thing would be to bring it forward if you don't want to wait that long. I know when you have a mc all you want to do is replace it a.s.a.p so May does seem a long way off.

Good luck to all BFP testors. I am watching eagerly for the next 'batch'.

MistressIggi Mon 17-Sep-12 17:14:31

Abney hope things continue well for you. I still haven't quite got over the constant checking for blood. I know you must be on edge all the time, but things are looking good.

I can only echo what every has said about Snoopy's post - lovely to hear from you and what a thought-provoking post - so glad you have got through the massive hurdle of chemo.

Mercator brilliant news! So glad it has all gone well.
I am looking out for further news from PQ too.

Have noticed a couple of posts mentioning trying to conceive at 41 - just to say that's what I did last year, having LO just before I turned 42. You are not too old!

mollieboo Mon 17-Sep-12 17:19:55

abney v glad all is settled now for you.

cate welcome to the forum and big congrats on your pregnancy, lots of positive vibes to you. It must be such a worry but excellent news that you've already got further than your previous mc's. Following on from what you said, I'm so glad I've found this thread. I had never posted on a forum before this, its just great to know I'm not alone going through all of this.

Does the list need updating? I'm on a pc so could do it now.

mollieboo Mon 17-Sep-12 17:35:31

Hope this is right. Cate I've added you too.

Monday, 17 September 2012

The babies are arriving!

Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (EMCS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 – 39 weeks (CS) 14/5/12 7lbs.
Igggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy Thomas born (CS) at 38+6 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 40+0 - baby girl Amelia born 7/06/12 (CS) 7lbs
Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle), Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 - Baby boy Sebastian (ELCS) at 39 weeks 17/07/12 8.11 lbs.
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 40+1 wks EDD 24/07/12 Baby boy born 26th July, 7lbs 5. EMCS
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 38+4
coleyoz - V High NKC. DC#2, BFP cycle2, 41+1 - Baby born??!
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin. Baby boy James born 29/08/12, 6lb and 6oz at 36+5
PQ77 - DC#2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) Jonty (Jonathan) Edward arrived by c section 10/09/12 4lb 15 / 2.23 kg 33+1 wks
Mercator - DC#2 V High NKC, (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks) DS arrived by ELCS 14/09/12 7lb 2oz

3rd Trimester

Hopefulfor2nd - High NKC - TTC#2. – 38+1
Dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 38+1

2nd Trimester

HelterSkelter (IVF and immune therapy) 24 wks
Suemays - TTC#2. DD, followed by 6mcs all 6-8 weeks. V High NKC. Superov but this BFP a natural one. (Pred & Hydroxychloroquine) 21+2
Bertha337 - High NKC, 1 ectopic, 2 mcs, est 17+3
GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, Pred from BFP. 17+2 Next scan 5th October
Delta10 - High VNKC, 5 mcs followed by DS Pred baby, 1 further mc. Est 17+2
sarahs999 - DC1 followed by 5 mcs, high NKC (Pred), plus clexane twice daily for Factor V Leiden and Prothrombin, aspirin, cyclogest, intralipids. 14.6 wks
Jemimapuddleduk (33). 3 prev mc's over last 2.5 years between 7-11. Not tested for NK but prescribed 20mg pred, fragmin, asprin and cyclogest on NHS. 13.6 wks

1st Trimester

HavingKittens, 4mcs, 2 TOP TS21, 7th pg, 5th SO Cycle, VHNKC, 40mg Pred, Hydroxy, Intralipids, etc. 10+2, next scan 18 Sept, Nuchal 26 Sept.
Buster - 4 mc. VHKC (pred 40mg, lipids, clexane, cyclogest,aspirin) 8+3
Cate - DD followed by 6 mc, VHNKC 40mg pred, intralipids, 7w

BFPs awaiting first scans
Abney (44), TTC#2, SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),- super ov 6+3

STATUS UNKNOWN
Hannah77 - DD born 2003, 3 losses 21 wks, 17wks, 7wks. BFP 25th July

TTC – ASSISTANCE - TTC 2ND or more

Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
Arianrhod - TTC#2 DD then 5 mcs 5-9 wks (2 on treatment), V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine) – super ov
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2 on Hydroxy, -super ov
LJ71 - two older DCs, mc on treatment. SO, pred, hydroxy

TTC – UNASSISTED - TTC 2ND or more

Iloveblue - under Prof Quenby for HNKC. 2 healthy boys, followed by 20 week loss, 2 early mcs, 15 week loss.
Willitbe - TTC#4 DS, DD, 1 mc, DS2, followed by 11mcs, (5-11 weeks). NKC not tested, TTC #4 (after m/c 12) Fertility cons prescribed pred.
Holldoll - TTC #2 High NKC - Pred, Cyclogest & aspirin. DS followed by 4 mcs, heart stopped around 5-6wk. Mc in March 2012 on treatment. Pred started at BFP.
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Mollieboo - 5 mcs, 1 DS (lost my little angel), high NKC - pred, intralipids, aspirin, clexane, cyclogest

TTC – ASSISTANCE - TTC 1st

Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, 2nd chemical on treatment/IVF - SO
duggs1976 - TTC#1 -4 mcs all 7-12 weeks. - TTC #1 – last chemical on treatment/IVF in April. SO
BellyD - V High NKC, MTHFR homo, TTC#1, 5mcs, SO, hydroxychloroquine
Carebear1 - V high NKC

TTC – UNASSISTED - TTC 1st

ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April - mc on treatment.
EchoJuliet, awaiting diagnosis, Preg 1 -MC 10 weeks (heartbeat stopped at 6w), mc 20w, mc at 8 weeks (heartbeat stopped at 6.5w)eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of IUI No BFP in 20+ cycles of trying
London - High NKC, April - mc on treatment.
picolina - TTC#1 4 mcs, all around 6 weeks. V High NKC MC on treatment
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
Gransol - Seven mcs - all losses between 6 & 7 weeks

mollieboo Mon 17-Sep-12 17:41:50

Oops Mercator I'm sorry I know you had a little girl and I put DS, still getting to grips with forum speak, altered it now! Hope you're enjoying your little bundle of joy x

Monday, 17 September 2012

The babies are arriving!

Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (EMCS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 – 39 weeks (CS) 14/5/12 7lbs.
Igggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy Thomas born (CS) at 38+6 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 40+0 - baby girl Amelia born 7/06/12 (CS) 7lbs
Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle), Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 - Baby boy Sebastian (ELCS) at 39 weeks 17/07/12 8.11 lbs.
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 40+1 wks EDD 24/07/12 Baby boy born 26th July, 7lbs 5. EMCS
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 38+4
coleyoz - V High NKC. DC#2, BFP cycle2, 41+1 - Baby born??!
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin. Baby boy James born 29/08/12, 6lb and 6oz at 36+5
PQ77 - DC#2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) Jonty (Jonathan) Edward arrived by c section 10/09/12 4lb 15 / 2.23 kg 33+1 wks
Mercator - DC#2 V High NKC, (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks) DD arrived by ELCS 14/09/12 7lb 2oz

3rd Trimester

Hopefulfor2nd - High NKC - TTC#2. – 38+1
Dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 38+1

2nd Trimester

HelterSkelter (IVF and immune therapy) 24 wks
Suemays - TTC#2. DD, followed by 6mcs all 6-8 weeks. V High NKC. Superov but this BFP a natural one. (Pred & Hydroxychloroquine) 21+2
Bertha337 - High NKC, 1 ectopic, 2 mcs, est 17+3
GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, Pred from BFP. 17+2 Next scan 5th October
Delta10 - High VNKC, 5 mcs followed by DS Pred baby, 1 further mc. Est 17+2
sarahs999 - DC1 followed by 5 mcs, high NKC (Pred), plus clexane twice daily for Factor V Leiden and Prothrombin, aspirin, cyclogest, intralipids. 14.6 wks
Jemimapuddleduk (33). 3 prev mc's over last 2.5 years between 7-11. Not tested for NK but prescribed 20mg pred, fragmin, asprin and cyclogest on NHS. 13.6 wks

1st Trimester

HavingKittens, 4mcs, 2 TOP TS21, 7th pg, 5th SO Cycle, VHNKC, 40mg Pred, Hydroxy, Intralipids, etc. 10+2, next scan 18 Sept, Nuchal 26 Sept.
Buster - 4 mc. VHKC (pred 40mg, lipids, clexane, cyclogest,aspirin) 8+3
Cate - DD followed by 6 mc, VHNKC 40mg pred, intralipids, 7w

BFPs awaiting first scans
Abney (44), TTC#2, SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),- super ov 6+3

STATUS UNKNOWN
Hannah77 - DD born 2003, 3 losses 21 wks, 17wks, 7wks. BFP 25th July

TTC – ASSISTANCE - TTC 2ND or more

Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
Arianrhod - TTC#2 DD then 5 mcs 5-9 wks (2 on treatment), V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine) – super ov
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2 on Hydroxy, -super ov
LJ71 - two older DCs, mc on treatment. SO, pred, hydroxy

TTC – UNASSISTED - TTC 2ND or more

Iloveblue - under Prof Quenby for HNKC. 2 healthy boys, followed by 20 week loss, 2 early mcs, 15 week loss.
Willitbe - TTC#4 DS, DD, 1 mc, DS2, followed by 11mcs, (5-11 weeks). NKC not tested, TTC #4 (after m/c 12) Fertility cons prescribed pred.
Holldoll - TTC #2 High NKC - Pred, Cyclogest & aspirin. DS followed by 4 mcs, heart stopped around 5-6wk. Mc in March 2012 on treatment. Pred started at BFP.
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Mollieboo - 5 mcs, 1 DS (lost my little angel), high NKC - pred, intralipids, aspirin, clexane, cyclogest

TTC – ASSISTANCE - TTC 1st

Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, 2nd chemical on treatment/IVF - SO
duggs1976 - TTC#1 -4 mcs all 7-12 weeks. - TTC #1 – last chemical on treatment/IVF in April. SO
BellyD - V High NKC, MTHFR homo, TTC#1, 5mcs, SO, hydroxychloroquine
Carebear1 - V high NKC

TTC – UNASSISTED - TTC 1st

ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April - mc on treatment.
EchoJuliet, awaiting diagnosis, Preg 1 -MC 10 weeks (heartbeat stopped at 6w), mc 20w, mc at 8 weeks (heartbeat stopped at 6.5w)eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of IUI No BFP in 20+ cycles of trying
London - High NKC, April - mc on treatment.
picolina - TTC#1 4 mcs, all around 6 weeks. V High NKC MC on treatment
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
Gransol - Seven mcs - all losses between 6 & 7 weeks

CateN Mon 17-Sep-12 18:37:50

Thank you everyone! Yes this is my first try on treatment. Trying not to get my hopes up too much - it is such a roller coaster. Feeling more sick this week which is good I guess but was hoping with the steroids that I might get away with it this time! Thanks for including me.

xx

Clabbage Mon 17-Sep-12 21:13:18

mercator massive congratulations. Fantastic news.

So pleased to see that you are hanging on there abney. Also to see the success the 40 pluses are having. It gives me hope and reminds me that it isn't 'madness' to try for a baby over 40.
cartoon, I'm in the kittens living in sin camp so would personally put the wedding off not the ttc, but I too am in the 'old' league!
Congratulations cate!

As expected, I had a natural mc on Friday night, i managed to retain the foetus for testing. It's amazing what you have to turn into a positive to survive this journey isn't it?? Head and heart are a bit detached at the moment; survival, I suppose. I know I don't need to explain it to you.

Clabbage Mon 17-Sep-12 21:25:25

sue I have thought a lot about you this weekend. I feel broken for you that you have to face such a hideous situation. If I'm honest it's something I've thought about in trying to have another child...'am I exposing myself to even more agonising loss/dilemma'. I am so so sorry that this is what you now face, and I know how pathetically inadequate those words are but please know they are from the heart. I shall be hoping beyond everything that you gain clarity at your meeting tomorrow. Most of all, I hope that clarity means you can see a future with your baby. This band of strangers is here for you, whatever xx

Havingkittens Tue 18-Sep-12 11:36:15

Welcome to the thread Cate. Sorry to hear of all you've been through. Wishing you the best of luck with this one. You are in very good company here as you can probably see. This thread and all the lovely ladies on it are an absolute lifeline!

Abney, glad to hear you've had no more bleeding. Hopefully, like mine, it was just things "settling in" that caused a bleed. I think the fact that it was watery is a good sign. That's what mine was like.

I'm another one who has conceived at 42 and am pleased to report that this morning's scan showed a good heart beat of 165 and measuring 10+4. Big up Mr Shehata! Or should I say small down Mr Shehata - he seems to have slimmed down somewhat!

Arianrhod Tue 18-Sep-12 11:49:10

Woohoo kittens, what a fantastic scan result! And yes, I thought that when I saw Mr S last Monday, he's definitely lost weight!

mollieboo Tue 18-Sep-12 12:06:08

Hello everyone, kittens that's wonderful news re your scan :-)

abney so glad everything has settled down for you, what a relief.

sue will be thinking of you today.

I'm off to see Mr S on Saturday for a review after taking steroids, am on my third cycle but was meant to go back after one cycle for a check. I obtained more steroids from my local hospital so I hope he doesn't tell me off for not going back sooner! I will see if I think he has lost some weight!

Am 10dpo today and got a bfn, but its still early I keep telling myself.

xx

GreenOlives Tue 18-Sep-12 14:16:40

Clabbage So sorry to hear that sad

Abney Great to hear that it has settled, sounds like implantation to me.

Kittens Fabulous news! grin

Mollie My BFP wasn't until 12 dpo, you've got plenty of time yet! I never went back to Mr S at all after getting my treatment plan - NHS have sorted me ever since!

cartoonface Tue 18-Sep-12 14:27:12

youve made me smile about mr s's weight he does have a bit of a belly doesnt he! grin

cartoonface Tue 18-Sep-12 14:28:30

clabbage well done for being able to do that. i guess some time you do just have to swith to survival mode. i hope that by doing so you will get some answers. take care

mollieboo Tue 18-Sep-12 14:45:16

olives I'm glad you said no bfp for you until 12dpo, I live in hope. That's interesting you had everything through the nhs, did you have intralipids or just steroids? Its such a long way from Wales to the clinic for us but Mr S has prescribed intralipids until 32 weeks when pregnant so we'll be back and fore Surrey a lot. I'm not taking any chances next time so will do whatever Mr S says, although I keep seeing jokes about all the money going towards Mr S's holiday fund!

Arianrhod Tue 18-Sep-12 15:14:25

Ah yes indeed, we're all happily contributing to Mr S's holiday fund grin

Abney Tue 18-Sep-12 18:47:29

Hi all, thanks for all of your kind words and reassurance. It really does help.

Havingkittens Fantastic news well done on reaching another hurdle. We are all routing for you.

Clabbage I hope you are OK and I am thinking of you at this sad time. Hopefully you will get some answers this time.

Buster76 Tue 18-Sep-12 20:01:50

Great news kittens smile

mollie fingers crossed for a bfp - why has he prescribed you lipids till 32 weeks? I have vhkc, he said I'll have my last one at 16 weeks.

He definately has lost weight! I saw him Friday.....maybe he's lost weight for a holiday wink

Im having another scan locally on Thursday, if thats good that will be the furthest I have got to. Mr S measured me at 8+4 on Friday, heartbeat 182bpm.
Im feeling very bloated, my jeans are soooooo tight!!
Find it so hard to positive sometimes, maybe trying to protect myself. When talking about future events or the coming months I cant help but say "if I am still pregnant then". Its been very hard keeping it from friends, dont want to jinx myself!! Have you told anyone kittens, abney?
Counting down the days.

Hello to all xxx

Abney Tue 18-Sep-12 20:50:35

Hi Buster 8.4 is fantastic although I know it is still such a worry. Good luck for Thursday. I will be thinking of you. I have only told my manager at work who is more like a friend to me. This helps as I don't I have to worry hence why I took the day of sick last Thursday. Apart from that only my mother in law knows as she looks after ds on a daily basis so I couldn't hide it from her. None of my family know. I have quite a few brothers and sisters but this time I didn't want to say I was pg followed by 'I have lost it'. Also I did not want to 'jinx' it either.

Arianrhod Wed 19-Sep-12 09:20:09

sue hoping you had some positive news yesterday, thinking about you hugs

Havingkittens Wed 19-Sep-12 11:13:44

Buster, sounds like you're doing well. 184 is some heartbeat! Louise said to me when I had my scan at 8+4 that if by that stage growth is on track and the heartbeat is strong then it's a pretty good sign that all is going to work out fine. I have told a few people actually. I told my auntie straight away as she is pretty much my closest family now. I told my grandma about a week ago and have told my 3 oldest friends who have all been such a support to me throughout this whole 5 year rollercoaster. I ended up telling my step dad yesterday under less than ideal circumstances and am frustrated that I ended up telling him before my dad but it was sort of unavoidable. We also told OH's mum. I kind of needed a few close people around me that knew because of all the other emotional stuff that I'm going through at the moment.

I am pleased to report that I got a text from PQ this morning. She asked me to update you all and thank you for all your thoughts and kind wishes. She's not been able to post because she can't use her phone on the unit. Jonty has been taken off the ventilator and oxygen and is breathing on his own. They will be keeping him in the hospital until he is strong enough to breast feed on his own, for now he is taking expressed milk through his NG Tube. PQ says it's pretty tiring for both of them so let's hope they get to go home soon!

MistressIggi Wed 19-Sep-12 13:54:59

Great to see some positive scan news from Kittens and Buster smile
And really glad to hear about Jonty, moving in the right direction.
Hope you're ok Clabbage, and of course hoping for better news from Suemays.

sarahs999 Wed 19-Sep-12 14:09:43

Hi all! Mr s has def lost weight. Currently at nl waiting for intralipids. Scan was good - measuring ahead by nearly a week so no wonder I can feel movement already!

Arianrhod Wed 19-Sep-12 14:21:53

Wonder if his doctor told him to lose weight .. smile

Excellent scan news sarah and buster for last Friday's scan, always great to see positive news, and good luck for your scan tomorrow buster.

And iggi loving the new nickname smile

GreenOlives Wed 19-Sep-12 18:05:01

Great scan news Buster and sarah! grin

Mollie I didn't need intralipids as only have high NKC as opposed to very high. So my NHS consultant just prescribed the meds and gave me lots of scans in the early days - poor Dr S would just be going to Butlins on my contribution to his holiday fund wink grin

Sue Hope the appt yesterday has helped with the difficult decision ahead.

Clabbage Hope you are recovering as well as can be expected.

suemays Wed 19-Sep-12 20:08:44

Appointment yesterday was as I expected. The baby will need an operation to remove the larger kidney if it survives birth. The remaining kidney will fail at some point but they can't do a transplant or dialysis under a year old. I have no option apart from to terminate. I can't believe I am writing this let alone letting this happen to my little one. I am in floods of tears writing this whilst my little one is happily kicking and moving around unaware of what I am going to do to it. I feel so guilty that as its mummy I can't do anything to help it. So tomorrow I have to somehow find the strength to let a doctor inject my babies heart to stop it and then they will give me a pill to turn off the pregnancy hormones. 48 hours later I will go in to be induced if labour hasnt started before then. I have never felt this low or empty and I know I will never come to terms with ending my babies life even though I know it's the most selfless thing to do. Tonight in bed I know that it will be the last time I will put my hands on my stomach and feel my baby. I can't bear to let that connection go but I have no choice.

If anyone can take anything positive from my experience its that at least mr s's treatment plan was a success for me and I hope it will be again in the future. The only thing keeping me going is the hope of trying again.

Sorry for not reading everyone's posts but I am finding this so hard. I just pray that no one else has to go through any of this.

Arianrhod Wed 19-Sep-12 21:25:29

Oh sue, I am in tears here reading your post, I am honestly devastated there wasn't something the specialists could do to help. Is there truly nothing they can do? I can only imagine the pain you're feeling right now and I know nothing I can say to ease that pain, you are facing the worst nightmare of any mummy anywhere. If we can hold your hand through this please remember we are here for you, to support you, hug you (albeit virtually) and most of all to listen to you whenever you want or need it.

I'm so truly heartbroken for you, and I so wish you weren't having to go through this. Take care of yourself, let others take care of you and know we all on here are thinking of you and grieving with you. xxx

MistressIggi Wed 19-Sep-12 21:27:39

Oh Sue, what can I say? How awful for you.
I take it the expectation is the 2nd kidney will fail before a year?
I wish you strength and some form of consolation over the days ahead. No-one should have to go through this.

snoopygirl Wed 19-Sep-12 21:53:02

Sue
I am so very sorry. After all you have been through to get here.
Life is just so unfair sometimes. Thinking of you and hope you find the strength from somewhere to get through this.
Love Snoopy
xxx

GreenOlives Wed 19-Sep-12 21:55:28

So sorry Sue Words are all inadequate. sad

Havingkittens Wed 19-Sep-12 22:04:40

Sending you lots of love and strength to get through this Sue. Just heartbreaking. xxxx

Pebbles73 Wed 19-Sep-12 22:06:00

Sue my heart is breaking for you and can't believe your are having to go through this. I just don't know what to say other than I am so sorry and my heart goes out to you and your family. Will be thinking of you.xxx

mollieboo Wed 19-Sep-12 22:54:05

sue im so desperately sorry. Sending you much love and strength xxx

Abney Thu 20-Sep-12 07:04:56

Sue my heart goes out to you at this difficult time. It looks like you didn't have a choice in this in the end and it was the doctors that made your mind up. Thinking of you and sending you lots of hugs.

Cheerfulcharlie Thu 20-Sep-12 07:21:00

Sue I am so, so sorry for what you are going through. I am thinking of you. It must feel totally unreal and so unfair.

sarahs999 Thu 20-Sep-12 09:03:58

Sue. So desperately sorry. I hope that you and your loved ones find a way to bear the unbearable. You are immensely brave and have already been the best mother to your tiny baby - doing the best thing you can for it no matter how painful. Wishing a peaceful sleep to your beautiful baby.

Jemimapuddleduk Thu 20-Sep-12 09:29:21

Sue, I have been thinking about you a lot and i was really hoping that there was going to be a positive outcome for you and the little one. I am so saddened to hear what you are going through and i hope you find some strength over the next few weeks to get through this truly awful and heartbreaking time. You and your family will be in my thoughts and prayers.

Buster76 Thu 20-Sep-12 10:47:21

sue I am so very sorry. What a truely horrendous thing to go through but the right one -to save your little baby from pain. So very, very sad.
Life really is very shit sometimes!!
Thinking of you xxxxx

Chasinrainbows Thu 20-Sep-12 13:02:43

Sue , my heart is breaking for you. I cant begin to imagine how you must be feeling. As difficult as it is you are making an impossible decision that's in the best interests of your baby. I hope you have lots of support around you at this difficult time. I am really at a loss for words , it's just all so sad. Praying for you xxx

Clabbage Thu 20-Sep-12 13:19:17

My thoughts are with you Sue at this awful time. I wish you as peaceful a passage through the next days, weeks, months as possible. I feel I should be able to find some useful words in light of my own loss but they all sound so cliched. Please be kind to yourself, talk to anyone who will listen and take your time with everything. I am so so sorry.

LJ71 Thu 20-Sep-12 17:54:53

Sue - I've no idea what to say to you. Keep strong. Loads of love, prayers and hugs xxxx

digitalgirl Thu 20-Sep-12 18:06:52

Oh god Sue what a difficult difficult truly hideous time. But you are making the right decision. You are protecting your child - from a life of pain. I don't know if I'd ever be brave enough to do the same but I imagine you feel bravery doesn't come into it. Take your time to grieve. Keep posting if it helps.

ChoccyPud Thu 20-Sep-12 21:16:47

Oh Sue I'm absolutely heartbroken for you. After everything this is such awful news. I'm so so sorry. You and your family are in my thoughts. Do talk to people - and we're here whenever you need us. Much love and hugs xx

BellyD Thu 20-Sep-12 21:38:22

Sue I am so dreadfully sorry. Wish there were words to heal the pain. Thinking of you xxxx

freelancegirl Thu 20-Sep-12 21:46:52

So, so sorry to hear such sad news sue. All our thoughts are with you xxx

suemays Fri 21-Sep-12 10:32:12

Thanks for all your support. The procedure yesterday was worse than I imagined as it was painful and traumatic. I had to keep still whilst the doctor injected a massive needle into my tummy. I could feel the baby moving whilst she was doing it which made it worse as all I wanted to do was push her off of me and protect my little one. It took about 30 mins so a lot longer than I thought and then we had to go off into another room to wait for the heart to stop. My dh kissed my tummy and said goodbye to our baby and told it we will always love it and sorry we couldn't help it. They then scanned me again to confirm the heart had stopped. I don't think I have ever cried so much before but at least I know my little one is free from any pain or suffering now.

I was given a tablet to turn off the pregnancy hormones and prepare for my induction tomorrow. I just hope that I don't go into labour today or tonight. I feel so empty and miss feeling my LO kicking. I still don't know if I want to see or hold my baby once I have given birth as i feel like the life left yesterday. We still don't know the sex as its legs were curled up but will find out tomorrow so we can name it. The hospital will do a service and bury it for us so that we will have somewhere to visit and remember.

Can someone move me off the 2nd trimester list as I can't bring myself to do it? We have been told I only need to wait 2 periods to start TTC again once they return. Nothing will replace the baby we have lost but I just hope that we will one day have our take home healthy baby to help heal my broken heart.

Good luck for everyone else with scans etc.

sarahs999 Fri 21-Sep-12 10:48:12

Sue that sounds utterly heartbreaking. I'm sorry it was so much worse than you thought.

I'm glad the hospital are allowing you a place to bury and visit the baby; it's very important. A friend lost her baby at 22 weeks and had a real battle to get a proper burial and service because it was treated only as a 'miscarriage' - so disrespectful of the parents AND the baby.

I will update the list and put you back in ttc. Well done for posting, I hope it's helping you process everything. Wishing you strength for the next few days.

Coconutfeet Fri 21-Sep-12 10:51:27

Oh Sue, I just logged in to catch up with everyone and saw your heartbreaking news. I just wanted to say how dreadfully sorry I am. You and your dh are in my thoughts. XXX

sarahs999 Fri 21-Sep-12 10:57:27

Updated at Sue's request.

Friday, 21 September 2012

The babies are arriving!
Stogan - V high NKC - cycle#2, DC#1, Baby girl Ellyson (DC1) born Sunday (EMCS) 11/03/12 7lb13.5.
Digitalgirl - High NKC - BFP cycle#2, Baby boy Franco (DS2) born at 39+0 on Easter Monday, 9/04/12, 8 lbs 12
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks, Baby boy Arthur born at 40+6 13/05/12 3.66kg
Comedy - V High NKC - BFP cycle#2, baby girl Matilda born DC#2 – 39 weeks (CS) 14/5/12 7lbs.
Igggi - High NKC & Hypothyroidism - BFP cycle#2, DC#2- Baby boy Thomas born (CS) at 38+6 16/5/12
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3, DC#1 40+0 - baby girl Amelia born 7/06/12 (CS) 7lbs
Freelance - TTC#1 V High NKC Thyroid/hashimotos - 4mcs (4th on 1st Pred cycle), Hydroxy, Pred, Intralipids, Cyclogest, . DC#1 - Baby boy Sebastian (ELCS) at 39 weeks 17/07/12 8.11 lbs.
Cheerfulcharlie - TTC#1 V High NKC, MTHFR, DC#2/ (metformin, intralipids, no pred). 40+1 wks EDD 24/07/12 Baby boy born 26th July, 7lbs 5. EMCS
batteryhen - High NKC, factor v leiden. DC#1 BFP cycle 3. 38+4
coleyoz - V High NKC. DC#2, BFP cycle2, 41+1 - Baby born??!
FrozenNorthPole - RMC, NKC status unknown, Cyclogest, aspirin. Baby boy James born 29/08/12, 6lb and 6oz at 36+5
PQ77 - DC#2, 2 mcs, then DS, followed by 4 mcs - 6-8 weeks. V High NKC (BFP cycle one but mc) Jonty (Jonathan) Edward arrived by c section 10/09/12 4lb 15 / 2.23 kg 33+1 wks
Mercator - DC#2 V High NKC, (Pred, Intralipids, Cyclogest) 4mcs (1 pre dd, 3 post - all at 6-8 wks) DD arrived by ELCS 14/09/12 7lb 2oz

3rd Trimester
Hopefulfor2nd - High NKC - TTC#2. – 38+5
Dunnit - V High NKC - , IVIG, Cyclogest and Clexane. 38+5

2nd Trimester
HelterSkelter (IVF and immune therapy) 24+4
Bertha337 - High NKC, 1 ectopic, 2 mcs, est 18+0
GreenOlives - TTC#2 DS followed by 2mcs, 1 ec, 1 chem. High NKC, Pred from BFP. 17+6 Next scan 5th October
Delta10 - High VNKC, 5 mcs followed by DS Pred baby, 1 further mc. Est 17+6
sarahs999 - DC1 followed by 5 mcs, high NKC (Pred), plus clexane twice daily for Factor V Leiden and Prothrombin, aspirin, cyclogest, intralipids. 15+3 wks
Jemimapuddleduk (33). 3 prev mc's over last 2.5 years between 7-11. Not tested for NK but prescribed 20mg pred, fragmin, asprin and cyclogest on NHS. 14+3 wks

1st Trimester

HavingKittens, 4mcs, 2 TOP TS21, 7th pg, 5th SO Cycle, VHNKC, 40mg Pred, Hydroxy, Intralipids, etc. 10+6, next scan 18 Sept, Nuchal 26 Sept.
Buster - 4 mc. VHKC (pred 40mg, lipids, clexane, cyclogest,aspirin) 9+0
Cate - DD followed by 6 mc, VHNKC 40mg pred, intralipids, 7+4w

BFPs awaiting first scans
Abney (44), TTC#2, SO 2, 6 MC No pred (2 chromosone, 4 unexplained), 1 DS Pred Cycle 1 & fragmin, 4 MC on Pred (1 fragmin),- super ov 7+0

STATUS UNKNOWN
Hannah77 - DD born 2003, 3 losses 21 wks, 17wks, 7wks. BFP 25th July

TTC – ASSISTANCE - TTC 2ND or more
Pinkdragon - High NKC. Pred Daughter (after 4 mcs) TTC #2, super ov.
Arianrhod - TTC#2 DD then 5 mcs 5-9 wks (2 on treatment), V High NKC, MTHFR homo, hypothyroid, TTC#2 (Pred & Hydroxychloroquine) – super ov
Brownstag - V High NKC, 3 yo DS is a Pred Baby! TTC #2 on Hydroxy, -super ov
LJ71 - two older DCs, mc on treatment. SO, pred, hydroxy

TTC – UNASSISTED - TTC 2ND or more
Iloveblue - under Prof Quenby for HNKC. 2 healthy boys, followed by 20 week loss, 2 early mcs, 15 week loss.
Willitbe - TTC#4 DS, DD, 1 mc, DS2, followed by 11mcs, (5-11 weeks). NKC not tested, TTC #4 (after m/c 12) Fertility cons prescribed pred.
Holldoll - TTC #2 High NKC - Pred, Cyclogest & aspirin. DS followed by 4 mcs, heart stopped around 5-6wk. Mc in March 2012 on treatment. Pred started at BFP.
ScooterChaser - V High NKC - TTC#2 (Pred & Hydroxychloroquine)
Mollieboo - 5 mcs, 1 DS (lost my little angel), high NKC - pred, intralipids, aspirin, clexane, cyclogest
Suemays - TTC#2. DD, followed by 6mcs all 6-8 weeks, one loss @ 22 weeks. V High NKC. (Pred & Hydroxychloroquine)

TTC – ASSISTANCE - TTC 1st
Pebbles - TTC#1 High NKC, PCOS, super ov cycle 1 (post IVF - 1 chemical, 1 mc, 2nd chemical on treatment/IVF - SO
duggs1976 - TTC#1 -4 mcs all 7-12 weeks. - TTC #1 – last chemical on treatment/IVF in April. SO
BellyD - V High NKC, MTHFR homo, TTC#1, 5mcs, SO, hydroxychloroquine
Carebear1 - V high NKC

TTC – UNASSISTED - TTC 1st
ChoccyPud - V High NKC - TTC#1 (Pred & Hydroxychloroquine). April - mc on treatment.
EchoJuliet, awaiting diagnosis, Preg 1 -MC 10 weeks (heartbeat stopped at 6w), mc 20w, mc at 8 weeks (heartbeat stopped at 6.5w)eurochick - TTC#1 High NKC, pred cycle 6, had 3 cycles of Super Ov, now on 2nd cycle of IUI No BFP in 20+ cycles of trying
London - High NKC, April - mc on treatment.
picolina - TTC#1 4 mcs, all around 6 weeks. V High NKC MC on treatment
Lemonsherbet - TTC#1 v high/high NK, Mthfr, thyroid issues, pred 1st trim & Intralipids 2nd on bfp
buster76 -V High NKC, Factor V Leiden.
Gransol - Seven mcs - all losses between 6 & 7 weeks

CateN Fri 21-Sep-12 11:09:27

Sue, I think are so incredibly brave because it seems to me that you made the best decision for your baby and the hardest decision for yourself. That is what being a true mummy is. The easiest thing for you would have been to continue with the pregnancy but that was not the best thing for your little one. Sending all my positive thoughts for some good, healing news for you in the near future in your ttc journey.
Cate
xx

Arianrhod Fri 21-Sep-12 12:23:59

sue Once again in tears here. I'm so desperately sorry you and your DH are having to go through this, you are so very brave doing what you feel to be the best thing for your little one even though it causes you a whole world of pain.

Stay strong, look after yourself, and remember we're here for you if we can help in any way. xxx

Clabbage Fri 21-Sep-12 13:37:33

Oh Sue, my tears are tumbling for you. May your precious child rest in peace. Please let us know if and when you feel able what you call him/her as I am sure we would all like to remember your baby by name and send prayers/love/harmony into the world for her/him. I have attempted to write this several times and deleted as I just cannot find the words of care/empathy I want to give. There are none as things like this shouldn't happen. Xx
And Sue, I had DD1 a year and 2 days after I lost DS1. She woke me from the grief. The fear having her was stifling at times but worth every second. She is a fabulous 16yo and when she passed her GCSe's this summer, I wept for her and for him (deeply) but mostly for the balanced person she is, given the grief she was born into. She reminds me There is Hope, always Hope x

helterskelter99 Fri 21-Sep-12 13:44:23

Sue - I am so sorry to hear your news and hope your induction is as easy as it can be. Take all the painkillers you are offered, there is no need to be brave. xxx
Also this may be out of turn but always remember you made the best decision for your baby based on the medical advice you were given, if anyone ever tries to make you doubt that please don't listen.

(We had to terminate at 14 weeks in 2008 for various abnormalities & I still get angry when people say things without thinking about what they would and wouldn't do)

Hope everyone else is ticking along xx

batteryhen Fri 21-Sep-12 15:05:49

Sue sad what a dreadful time you are having. I can't imagine what you are going through . I hope the next few days go as well as they can for you. Much love to you and your family xx

digitalgirl Fri 21-Sep-12 17:31:33

Thinking of you and your family Sue, I'm so sorry for the pain you feel. Clabbage has some very wise words there. Am in awe of the experiences some of you have been through, surviving and not losing hope.

MistressIggi Sat 22-Sep-12 10:31:43

I'm going to a remembrance service today for people who have suffered miscarriages - I will be remembering all of your losses, and especially Sue and her family at this time, as well as my own four.

MistressIggi Sat 22-Sep-12 17:33:06

There was a bit in the service today where bells were passed round the cathedral, and you rang them to remember your baby(ies). It was so hard to hear so many bells ringing, all representing someone's pain and loss, and yet so wonderful to publicly acknowledge your losses.

suemays Sun 23-Sep-12 11:25:04

Still waiting to go into labour since yesterday morning. I am having pessaries every six hours but have not dilated. Passed a load of clots last night prob due to the procedure on thurs. I have potentially got another 24 hours on pessaries and they will then review. They can't break my waters yet as I am not dilated so can't be induced on oxcitocin on a drip! Really fed up as just want it all over with but my body is refusing to give up the pregnancy. All those early weeks praying that my body wouldn't reject the baby and now that's all I want!

MistressIggi Sun 23-Sep-12 17:06:33

So sorry things have not progressed a bit faster Sue. How awful for you sad

Abney Sun 23-Sep-12 18:34:44

Hi Sue I have been thinking of you alot and can't imagine the pain you are going through. Hopefully the nurses are taking good care of you. I bet you just want to get back to your dd and try to start recovering from this terrible episode in your life. As you have a DD already I know they will not let you stop for a minute. In their eyes it is bau which I think forces you to get back to 'normality' quicker than you would or your body would like. Anyway let's hope your future is full of happiness and all of your dreams come true. It is nothing short of what you deserve.

GreenOlives Sun 23-Sep-12 20:40:25

Sorry to hear that things are not progressing Sue I hope that the physical part of this nightmare time is over as soon as possible. Xxx

digitalgirl Sun 23-Sep-12 22:30:29

sue thinking of you x

Arianrhod Mon 24-Sep-12 08:37:26

sue Also thinking of you, and praying for this to be over as soon as possible so you can start to heal. xx

freelancegirl Mon 24-Sep-12 09:30:17

Just marking place and adding my thoughts for Sue, really hope it all goes quickly xxx

Havingkittens Mon 24-Sep-12 12:18:57

Sue, I'm so sorry you are having such a difficult time of it, on top of everything. Really the last thing you need. Sending you lots of love. xx

Havingkittens Mon 24-Sep-12 14:06:15

Have just tried to make a positive gesture by booking my 12 week intralipids for next week but I'm so f***ing scared about my Nuchal scan on Wednesday.

mollieboo Mon 24-Sep-12 14:41:22

sue hope things progress quickly for you. Love to you all.

kittens such a nervewracking time for you. Hope everything goes well on wednesday.

clabbage your words to sue really moved me, about how your second child woke you from your grief. We lost our son in january and we are so desperate for another baby to light up our world again. I've had 2 mcs since then too.

Im now on mr s's superovulation plan, hoping it works quickly. Has it worked quickly for any of you ladies? I always fell pregnant easily until I took pred, so am really hoping this works quickly. I already worry about another mc though even before I get pregnant, im sure you're all the same...

Hope everyone is doing ok x

Havingkittens Mon 24-Sep-12 14:46:08

mollie, I fell pregnant on my 5th cycle of Superovulation. I used to get pregnant very easily, whether that changed because of my age or being on Pred I will never know.

mercator Mon 24-Sep-12 15:56:58

Sue I have no words .. but my heart goes out to you at this devistating time. All my love xx

sarahs999 Mon 24-Sep-12 16:53:17

kittens, hugs for your nuchal. I know how you feel. I reccomend lots of googling so you know what you're looking at - with my scan I could see immediately that the nuchal depth was small, so I didn't have those agonising minutes while the sonographer fiddled round getting the best pic.

LJ71 Mon 24-Sep-12 17:44:01

Sue thinking of you constantly.

Mollie I fell on my first SO attempt, although it ended in mc.

Havingkittens Mon 24-Sep-12 18:11:51

Sarah, I don't think I'll even be able to look at the screen until they say all looks OK.

hopefulfor2nd Tue 25-Sep-12 04:54:49

I've been lurking for a long time on and off and have just caught up with Sue.
Sue, words fail in these situations. I truly don't know what to say, my thoughts are with you.
Xxxxxx

freelancegirl Tue 25-Sep-12 09:04:22

Sue am hoping by now something has started to happen/and is (physically at least) soon over.

kittens I know you have had terrible scans in the past - you must be terrified. When is it? Hoping everyone else is ok.

Sarah I intend to email you every day and then forget - but just checking if you would still be on for Sunday? My first case study! Then I will be picking on the rest of them...We need to get this stuff out there! It won't take long. Will email you.

Keep meaning to contact PQ too to see how J is! PQ I also have that mobile for you. Hope he is continuing to thrive.

Time just runs away with me. It doesn't help that I am back working and have three articles and two reports to write this week!

Havingkittens Tue 25-Sep-12 10:05:15

Hi free, I don't know if you saw my post last week but I have been in touch with PQ. J is doing well, breathing on his own but still at the hospital until he is strong enough to breast feed rather than being fed through his tube. PQ can't post from the unit as she's not able to use her phone.

My scan is tomorrow. I'm in a bit of a state. I'm so anxious and in the meantime I have so much family stuff going on too that my head is fit to explode what with all that's going on. My grandmother on my dad's side died yesterday and there's a lot of family politics and people not speaking to one another so it's all a massive headf* and the last thing I need this week, as I seem to have ended up the go between. I have a constant cracking headache coming off the pred too which isn't helping matters. Totally overwhelmed, hormonal, scared and missing my mum like mad sad.

sarahs999 Tue 25-Sep-12 10:23:33

Sent you an email free

sarahs999 Tue 25-Sep-12 10:27:39

Bless you kittens. It all sounds incredibly overwhelming. Hopefully your scan will be plain sailing and that will be one box you can tick and set aside. Sorry to hear about your grandmother. How sad, and what bad timing for you too.

I've been missing my mum too (it's two years exactly since she died). I had the strangest, most upsetting dream the other night, where she was suddenly back, and acting like nothing had ever happened, and it turned out we had buried the wrong person and she hadn't died but had been waiting at hospital for two years for us to pick her up! And it was so odd because everyone was acting like this was the most normal state of affairs and I was pulling my hair out trying to get someone to share my horror and astonishment.

What dosage of pred are you on now? Did you start at 40 or 25, I can't remember? I was fine until I went from 5 to 0, and then I had a massive energy crash. No headaches though, so lucky there.

Arianrhod Tue 25-Sep-12 10:48:20

kittens So sorry for all the grief and upset you're going through right now, it's the very last thing you needed! Hope to goodness everything is just fantastic on Thursday, which will then hopefully give you the strength to deal with everything else that's going on. Why not talk to your mum as if she was still here? Might sound a bit crackers, but who's to say on some level she isn't still aware? No-one knows for sure, and either way, it might help you? Huge hugs, and sending lots of positive vibes for you on Thursday. And to sue, still thinking very much about you.

Havingkittens Tue 25-Sep-12 17:58:10

Thank you. Yes, the timing sucks. Especially as I've not told my dad or stepsister that I'm pregnant yet so they have no clue that getting embroiled in family politics and being piggy in the middle is just about the last thing I could do with this week. I am sad about her death but mostly based on childhood memories. We haven't been close since I was a teenager as she lived in California so I hardly saw her, and there's the family politics etc too. It's my maternal grandmother who is like a mum to me and is slipping further and further into dementia that is harder to get my head around at the moment. Too much going on this year really, so I'd better get good news tomorrow otherwise I might just come completely unravelled!

I do speak to my mum ari, sometimes out loud, sometimes in my head. Sometimes it's comforting and sometimes it just highlights the fact that she's really not there anymore but I told her when she was alive that I would continue to speak to her and I hope she can hear me. I have, until now, felt reasonably calm about the pregnancy. I've not had massive anxiety about miscarrying, knicker checking etc. Maybe part of that if because it's been so long since my miscarriages that I don't have that same raw feeling of fear or maybe it's because somewhere my mum is protecting me.

sarah, sorry you are having upsetting dreams about your mum. Anniversaries always bring so many thoughts and memories to the front of your mind, don't they? I am absolutely dreading Christmas. I just want to hide and pretend it's not happening, but still be around my family for comfort. It was this time last year that I was in France looking after my mum after her operation when we found out the cancer had spread so aggressively and that time would be short so I am finding myself thinking about that last time that we were together when she was still strong enough to sit and chat and walk around the garden with me. I guess you have the same bittersweet feelings of being happy to be pregnant but heartbroken not to be able to share this with your mum too. God, life really is a bitch sometimes innit?

Clabbage Tue 25-Sep-12 21:57:12

havingkittens loads and loads of luck for tomorrow. I shall be thinking of you. Really sorry to hear that you have so much difficulty surrounding you. Life is so not fair.

mollieboo i so hope that you have a successful pregnancy very soon. I really understand the desire to pour all that love that's been somehow stemmed by loss, into another child. I was incredibly lucky to have two successful pregnancies after losing my ds and can only imagine how tough miscarrying in the wake of losing your son, must be.

sue you are never too far from my thoughts xx

PQ77 Wed 26-Sep-12 09:38:14

Just a quick one from the hospital cafe.

Sue - my heart goes out to you.
Everyone has expressed so beautifully what I have been thinking, I feel I can't add anything more save to say I had been thinking of you constantly. I hope you have been getting good care from bereavement midwives or whatever your hospital can provide.

Kittens - nervous for you with everything crossed. Please keep us posted

Arianrhod Wed 26-Sep-12 09:51:33

kittens Said it on the other thread, but I'm really rooting for you and jaffa today, if you feel you can please do let us know how you get on?

sue thinking about you xx

suemays Wed 26-Sep-12 13:09:43

My little angel Scarlet was born last night at 7.44 after four hours of horrendous labour. My mum came to the hospital and we looked at her together. She was bigger than I imagined and looked just like my dd1. Can't stop crying as I don't want to leave her in hospital on her own. This is so hard.

kittens good luck with your nuchal xx

Arianrhod Wed 26-Sep-12 13:51:22

Oh sue, my heart breaks for you and your beautiful angel Scarlet. Nothing I can say will take your pain away, but I'm so desperately sad for you and for the loss of your little one. Have courage, and take care of yourself. hugs xxx

mollieboo Wed 26-Sep-12 14:16:37

sue wishing you lots of strength to get through this. Scarlet will always be your beautiful little angel baby.

I had to leave my little angel at the hospital a few months ago, I know the agony you are going through. I know my boy is with me all of the time though in spirit.

Life is so dreadfully unfair. I hope your future is bright after so much heartbreak.

Lots of love xx

GreenOlives Wed 26-Sep-12 16:16:41

So sorry Sue. May beautiful Scarlet rest in peace. Xx

Abney Wed 26-Sep-12 17:38:09

Sue thinking of you and your family at this sad time. Sending you lots of hugs x

LJ71 Wed 26-Sep-12 17:41:59

Loads of hugs Sue. Well done for getting through this thus far. Loads of love and hugs for baby Scarlet. xxxx

Havingkittens Wed 26-Sep-12 17:42:24

Oh Sue, I'm so sorry you had such a traumatic time of it, on top of such a devastating loss. My heart goes out to you, it really does. I wish you only good things for the future and send you lots of love.

My scan went well, I'm happy to say. My odds were 1:600, but because of my history and the fact that I wanted a definitive answer I had the CVS anyway. I had forgotten how painful and traumatic it was to have that down! It was pretty hideous. Anyway, it's done now. They said the risk of miscarriage was 1:500 so hopefully all will be fine. I've had two before with no miscarriages and the risk they gave me then was 1:100. I get the results back on Friday afternoon but I think we can pretty much assume all is good.

duggs1976 Wed 26-Sep-12 18:27:10

Good for you kittens those figures sound promising. Big milestone you've reached. Enjoy the peace of mind honey smile x

sarahs999 Wed 26-Sep-12 18:30:38

Sad but warm thoughts for you and Scarlet and your DH, Sue. I'm so sorry.

BellyD Wed 26-Sep-12 18:52:18

Sue you are so very brave. You have been very much in my thoughts and will continue to be so. What a beautiful name you gave you daughter, may she rest in peace. X

BellyD Wed 26-Sep-12 19:04:18

kittens you must be so relieved after today. Really glad it was good news for you and I am sure that will all be confirmed on Friday.

LJ I hope you don't mind me asking but did you get your results of your erpc? Our sample got overwhelmed with bacteria so didn't tell us anything. So gutting as this is the second erpc in a row when this has happened so we are still totally in the dark about why we miscarried. Mr S said he only had had one other failed result in the last year - not helping!! Have had further tests and have a tnf alpha mismatch which Mr S would treat with humira, but I am terrified of taking it - Choccy you had a bad reaction to it recently didn't you? I am a very allergic person. So we are back on super ov for a couple of months and going to review our options in Jan, feel the dream is slowly slipping through our grasp but trying to keep fighting.

Snoopy so good to hear from you and to read your heroic post. Glad that hairy Snoopy has been helping you cope through your ordeal and I really hope that the worst is all behind you.

Waves to everyone else.

digitalgirl Wed 26-Sep-12 19:50:38

sue a beautiful name. She will always be in your heart. Xxx

digitalgirl Wed 26-Sep-12 19:52:23

kittens I'm so pleased to hear that the nuchal went well and Cvs is looking promising. Must be a huge relief after your previous experiences.

Clabbage Wed 26-Sep-12 20:12:08

sue what a beautiful name for your little girl. I am really pleased you chose to see her, however painful, as she will always be your child and your relationship with her will be forever in spite of her loss. She will live on in your heart and mind. I am so deeply sorry that you have had to suffer so and like mollieboo remember how awful it is to leave your child behind. My thoughts are with you.
How is DD1? I seem to remember that 'Sands' do some good books to help siblings understand baby loss. Just a thought x

Clabbage Wed 26-Sep-12 20:20:58

kittens what great news. I look forward to confirmation on Friday.

bellyd I have recently had 'products' (horrible word) sent for testing via NHS. I am so hoping to get some results but it seems that it often goes wrong. Mr S offered to do an ERPC but as I live in Devon it was impractical and I actually mc'd before that was an option. He told me he'd performed 32 ERPC's this year and 31 had chromosomal problems. Would it be wrong of me to confess that I'm not sure I believed him. I can't explain why.

duggs1976 Wed 26-Sep-12 20:48:49

I don't believe him I'm afraid.. He wasn't too pleased with me when I asked why he thought my 2 chromosonally perfect embryos had miscarried after I had had intralipids, 40mg pred, clexane, asprin etc etc .. he said is just one of those things. (I did think.. well 2 of those things actually). Ho hummm....

ChoccyPud Wed 26-Sep-12 21:23:18

sue my heart goes out to you, I'm just sorry I don't have the words to express exactly how I feel. Scarlet is a beautiful name. Look after yourself and take the time you need. Thinking of you.

Kittens fingers crossed its all confirmed as ok on Friday. I'm sorry I don't understand all the odds, never having got that far, but it certainly sounds good to me. Fab news after the time you've had. Hope you're managing ok with all the family politics...

BellyD please please don't not have humira because of the reaction I had!! Allergies are essentially your immune system overreacting to something. I have no idea if you'd be more likely to be allergic to humira with your history than otherwise. Google it and you'll find rashes are common. Whether as all over as I had it I don't know. Talk it through with Mr S, but assuming you go ahead, just keep an eye on your body and how you feel. Happy to describe things more on PM if you like.

Waves to all smile

batteryhen Wed 26-Sep-12 21:41:37

Sue sad you have been through such an awful time. Scarlett is a beautiful name. I wish I could just wrap you up in a warm protective bubble. It's so awful that you are going through this xxx

Kittens... smile

freelancegirl Wed 26-Sep-12 21:53:18

Hi all, so sorry to hear about that awful experience Sue. I hope the future becomes so much brighter for you soon.

Kittens I know how fabulous it must be for you to finally get pregnant, get to 12 weeks and have a clear 12 week scan! It's amazing good news and I hope you're celebrating, even though other things are so hard for you at the moment. This will be the one!

Hi everyone else, all ok here just busy xx

mollieboo Wed 26-Sep-12 22:19:01

Hi kittens, wonderful news about your scan today, am so pleased for you.

Life sounds very complicated at a time when you need an easy life and it must be so hard missing your mum, but I bet you feel so relieved and happy after your good news x

mollieboo Wed 26-Sep-12 22:27:15

clabbage thank you for your kind words the other day. I hope you get your baby you want so much too, very soon. Keep strong, so tough I know x

duggs1976 Thu 27-Sep-12 06:33:48

I have just posted this on the Super Ovulation (upgrade Dr S to first class cabin) thread..

Was thinking about the central London meet up we are planning for Sat 27 October? 1pm for a spot of lunch. Perhaps Southbank as pretty central for everyone who can/wants to attend. It is sometimes a good opportunity to those of us facing these challenges to get together... whether it be struggling to even get pregnant now, or the more complex issues and diagnosis we've discovered from further testing, the new drugs and treatment that some of us are trying out etc.

Crikey it was almost a year ago I joined here and we had few meet up's last Autumn/Winter.. unfortunately there are a few ladies who were also there with me, troopers that we are.

Those who have shown an interest will chose a location and then we all rock on up. It's like an internet date..the rest of us sit looking for lost looking women of "child bearing" age sipping caffine free, non alcoholic drinks like that is actually going to help. A few bottles of red have been known to flow as the conversation gets started..wink

duggs1976 Thu 27-Sep-12 06:39:34

p.s been up since 4.30am 8 days past my 3 day frozen embryo transfer and not a hint of a line on a damn stick yet. I feel about as pregnant as the Pope right now, just feeling shite as have cold caught from DH's touch and go man-flu episode.

On a more positive note have got an IVF round lined up for early next year on NHS.. (don't ask how) but took a lot of questioning. Looking at my history the response was.. no wonder you are not pregnant anymore..look what you have been putting your body through the last year...???*

LJ71 Thu 27-Sep-12 06:56:07

Bellyd got my results last Saturday, and it was chromosonal. Mr S was practically jumping up and down, said that was a great result as his treatment plan was clearly working, and advised us to try again. He said if it'd not been chromosonal he would have been scratching his head, wondering how to tweak my treatment plan.

We have a real dilemna now as we had said last time was the last try, but I'm not sure we could forgive ourselves in 2/3 years when it really is too late if we weren't strong enough to go through it one more time. I'm really not sure how we'll finance it either, but there's always a way if there's a will.

I think we're going to try a couple of months "naturally" before we go back to SO - financial reasons if nothing else. This will definitely be the last try though - I don't think my body can cope with any more!

Kittens - fantastic news!

Duggs I'm up for the 27th, and live in Kent so the Southbank works for me.

mercator Thu 27-Sep-12 07:12:17

Sue my thoughts are with you and your family. Scarlett is a beautiful name and I know you will never forget your lovely daughter but I hope with time you manage to get through this heartbreak. I hope you are being provided with the support you need. Sending my love.

Coconutfeet Thu 27-Sep-12 16:20:59

Sue, I've been thinking about you lots over the last few days. Scarlet is a pretty name. Wishing you and your dh strength to get through this. xx

Coconutfeet Thu 27-Sep-12 16:22:21

Kittens You must be feeling so relieved. Great news!

Arianrhod Fri 28-Sep-12 09:38:34

sue Thinking about you xx

Arianrhod Fri 28-Sep-12 15:36:14

abney Just wondered how things are going with you?

Havingkittens Sat 29-Sep-12 00:34:07

Just posted this on the SO thread. NOW I'm feeling relieved! Couldn't somehow relax 100% until today.

After a rather tense afternoon of waiting I got my CVS results at the very end of the day. They know how to keep you on the edge of your seat! HUGE relief to get confirmation that there are no signs of the most common chromosome abnormalities or cystic fybrosis. They will send me results of further tests in a couple of weeks but these are for things that are very rare to they say the chances of any other problems are unlikely. I shall try and relax a bit until my anomaly scan. Now I have to let the information filter through that I am actually pregnant and may well end up having a baby.

Abney Sat 29-Sep-12 07:12:41

Hi all. Havingkittens congratulations on the scan results. Now hopefully you can relax and enjoy your pregnancy. Really good news.

Ari I am OK but I am really concerned that I don't feel the least bit pg. I know the pred is supposed to mask the symptoms but I am still worried. I have my first scan on Tuesday. Managed to put it off until 8 weeks and it will be a miricle if everything is OK. I know I am supposed to think positive but it is hard.

GreenOlives Sat 29-Sep-12 14:12:02

That's fantastic Kittens! grin
Sending lots of PMA your way Abney Xx

freelancegirl Sat 29-Sep-12 15:38:59

Kittens this is fabulous news! So amazing to see it all developing well isn't it, just taking it scan by scan. Are you going to get a doppler? I know it can freak some people out but for me it helped get through that long period between the 12 and 20 week scans.

Abney symptoms def come and go! Good luck for tues, we will be thinking of you.

All ok here. DS is 11 weeks on Tuesday would you believe. There are daily anxieties - such as is be eating enough, pooing enough, sleeping enough, sleeping too much etc etc but otherwise am getting more and more used to it.

Love to all xx

Coopde Sat 29-Sep-12 16:29:16

Hello ladies,
I wonder if u can join your group please?
I'm currently PUPO having today had 2 day 3 embies transferred, so here starts the waiting!
It's our 2nd ivf. Our first was due to 'unexplained infertility' (I hate that phrase). We had a grade a blast transferred but days before I found out my TSH level had gone from 0.16 to 8.9 and so u felt it was doomed from the start. Unbelievable I got a BFP but then had a m/c at 5weeks.
Not one to be fobbed off I read the Dr Beer book, having myself got underactive thyroid and endometriosis, and managed to get referred to Dr S as we live close to Epsom. I just knew there had to be an explanation and low and behold I have high NK cells. So I'm on 25 mg prednisolone, fragmin and I've also had my first intralipid just last week.
I'm given hope by your stories, though some ladies have certainly been through the mill and the road goes on, but it's good to hear the positive stories and know that I am not alone with this treatment.
So, hoping I can join and you might keep me sane for the next 11 days and beyond!
Emma xx

GreenOlives Sat 29-Sep-12 16:49:53

Hi Coopde Nice to meet you! Here's to those embies bedding in nicely and a great BFP in 11 days time! X

Coopde Sat 29-Sep-12 19:10:13

Thanks Greenolives. Just had acupuncture and now home to settle on the sofa. It seems the Ryder cup will be on the telly all night according to my DH so nothing strenuous (yawn!).

freelancegirl Sat 29-Sep-12 19:58:32

Hi Coopde welcome to the thread! Well done for knowing the lingo already with PUPO smile I don't post as often as previously as I have a little Pred Baby tugging at me much of the day but I started the thread way back (maybe a year ago?) and there are now, well, loads of us! And yes good that you took it into your own hands and found Dr Beer/Mr S.

WOuld love to chat more but gotta go! Am lurking though xx

Coopde Sat 29-Sep-12 21:16:03

Thanks freelance girl. Congratulations and thanks for setting up such a great thread.
DH is currently drinking a glass of Rioja, the git!
I will pop by when I can between relaxing and being a lady who lunches for the next few days while still off work.
Have a lovely weekend everyone.
Emma x

mercator Sun 30-Sep-12 08:47:19

Morning everyone.

Just wanted to say welcome to Coopde - you're in the right place this is a really courageous group of ladies on here with a wealth of knowlege to help provide support.

Kittens glad all went well with the scan - you must be very relieved.

Snoopy I don't think I ever got a chance to say lovely to hear from you and excellent news that the chemo is over and I hope the final stages of your treatment are easier on you. You are tremendously brave and a real inspiration to us all! Do stay in touch

Sue you are in my thoughts.

PQ any news on your lo.

On my side we still have no name for our little girl at 2 weeks which is very embarassing but we each prefer one above the other so will have to knuckle down and thrash it out! She's a very sleepy little thing and we ended up getting readmitted due to weight loss as I had another codeine induced panic attack the night I got home from hospital a I'd had with our dd1 - so off the drugs completely but have made a fantastic recovery from the op - thanks to you all for your positive vibes!

hopefulfor2nd Sun 30-Sep-12 18:01:46

Sue, hugs and love to you all and scarlet x x

just wanted to say that we had a baby girl on the 22nd, all went well and are now attempting to settle in as a family of 4!
Wishing everyone all the best, I will definately be lurking and catch up with everyone's news xx

Buster76 Sun 30-Sep-12 18:59:55

Hello!!
Great news kittens smile - is this where the relaxing starts?!

Hope alls ok Tues abney - totally with you on the symptom checking! But they really do come and go.

Welcome Emma - fingers crossed for a lovely BFP!!!! smile

Thinking of sue and scarlet xxx

All ok......I think!! Not had a scan for nearly 2 WHOLE weeks!! Got my nuchal on Wednesday, feeling very nervous! How long do the blood results take to come back? Do they tell you on the day about scan results?
Now on 25mg on Pred, weaning going ok - I think my stomach is strinking?! Worried as I dont feel constipated anymore!! Still waking up at stupid o'clock!

Hi to everyone!

xxx

Buster76 Sun 30-Sep-12 19:01:12

Congrats hopeful !!! smile xx

Comedyworks Sun 30-Sep-12 20:49:24

Dear all - its been months now since I've posted but wanted to say hi and see how everyone is getting on. I was so pleased to go through the list and read the positive news but devastated to read about your special daughter Sue - my heart goes out to you, I'm so so sorry that this has happened.
Sending my very best to all those with their babies, those carrying them and those trying xxx

GreenOlives Sun 30-Sep-12 21:49:20

Mercator Glad to hear all is going well smile
Hopeful Lovely news, congratulations! thanks
Buster Good luck for Weds! I know exactly where you're coming from on the gap between scans - its my 20 week one on Fri and it will have been a massive 12 weeks since my nuchal one! Thank god for the doppler which has kept me sane(ish) in between wink
Waves at Comedy, thanks for your good wishes.

duggs1976 Mon 01-Oct-12 07:48:26

Lovely to hear from you merc and comedy! Welcome Emma. BFN for me today after my frozen embryo transfer. Bit of a kick it the teeth ( not that I have many metaphorical teeth left these days) so am used to feeling like this now. On to another super ovation cycle for October. Hopefully the recent successes on there might start to rub off on some of us? Good luck for scans this week are there any?

MistressIggi Mon 01-Oct-12 09:22:52

Duggs I am sorry, you are long overdue for some good luck.

Hopeful, congratulations - are you going to namechange now?!

Everyone one this thread will always remember wee Scarlet, thinking of you Sue x

suemays Mon 01-Oct-12 20:27:44

Hi ladies, been lurking for a few days but I find it hard seeing myself on the TTC list again for the 3rd time in a year. We are still in limbo until we have Scarlets funeral which will be when she comes back from the post mortem at the end of this week/beginning of next. I feel so low at the moment and desperate to be able to start trying again even though it won't bring her back. I am worrying that we will never get our little one and that I am fated to keep having bad luck. Everyone around me seems to have such good luck and I don't know how many more times I can keep going. It was such a relief when I saw mr s at my 16 week scan and he congratulated us. I thought that I wouldnt be going back and the nausea etc had calmed down so I was feeling relaxed about the pregnancy and looking forward to the future for once. I now feel like I am back at square one and petrified I will either not be able to get pregnant or will lose it once I do.
Sorry for moaning so much when everyone has their own demons to deal with, I just worry that this is the end of the road for us.

Arianrhod Mon 01-Oct-12 20:48:14

sue You of all people never need apologise for moaning, you have more right than most! You should never have had to go through this, we all of us in our own way understand your fears for the future. Take heart, you've been through so much, surely if anyone is due some good luck it has to be you? Be gentle with yourself, you've been through hell - and are still going through it. Take whatever time you need to grieve and let your body re-sort itself out. You're not out of the running, and you have guts and strength to spare - and we're here to cheer you on and lend copious amounts of PMA when your stock runs low.

suemays Mon 01-Oct-12 21:04:17

Thanks ari I ordered some ovulation sticks today as will start to track my cycles once they start again. It makes me feel like I am doing something positive. I left a message for Louise at nlc to call me back as I want their advice on when we can TTC again and whether I should keep taking some of the drugs. I also want to know if this has happened with any of their other patients.

My gp is referring me to the recurrent miscarriage clinic at John radcliffe in Oxford as they do a lot of reassurance scans in early pregnancy and have specialists onsite if we do have any other problems. I just feel that now I am 40 I am clutching at straws and that the chance of me having eggs without chromosomonal problems is diminishing. Sorry for being so negative!

duggs1976 Tue 02-Oct-12 06:40:53

sue I have to say that you have proven you have good eggs still and scarlet was one of many ( you have millions even at 40) there is NO reason another good egg won't come along. The Super ov messed your cycles up a bit I think as u conceived on month off?! Not sure what the pred did but u seemed to have a good combination with pred and hydroxy as it got u thru first trimester. Think is a case of do everything u did again. You've got pregnant quicker than most of us still pissing about on here and SO thread so have some comfort in that fact. You'll do it again honey. X

LJ71 Tue 02-Oct-12 06:52:09

Thinking of you Sue. You seem so strong, but allow yourself the odd wobble! I completely understand your need to do something proactive and ttc immediately, but it may do your body a favour just to have a couple of months off? It took my body about 3 months to get over my last mc and erpc, and I was only in the early stages.

Listen to everyone's kind words and advice, but absolutely do what is right for you, whatever will help you carry on being strong.

Loads of love xxxx

Abney Tue 02-Oct-12 13:11:32

Just posted on the SO thread. Hi all, Just got back from Epsom and thankfully there is a strong heartbeat. I didn't look at the screen this time as I was too terrified. I had worked myself up into a state of pure negativity so it is still taking a while to sink in. It measured 7.4 which is in the correct range. Sadly he said that it looks like there was a twin but it is now just a 'product'. He said that the body would just absorb it. Anyway I am so relieved. I am still shaking. Just had my 2nd set of intralipids. Ari I hope you are OK. Thanks for your wishes. Just need to hope and pray I can now reach the 9 week stage.

Sue good to hear from you. I hope that you are OK. 40 is quite young these days so I don't think you have any worries there. Anyway good luck over the coming months and of course Scarlet will never be forgotten.

Arianrhod Tue 02-Oct-12 13:39:40

abney Said it on the SO thread but I'm so very pleased for you, a great relief, and crossing fingers all continues to go ok. When's your next scan? And thanks for asking .. I'm trying really hard to stay away from the tests as they'll only drive me mental, but as you know I'm not too hopeful, and I will probably test again on Saturday which is one week past when AF was due. If the FRER is still faint by then - well, I know the answer. I have seen all this before, this is almost identical to what happened in Dec last year, but of course as I said I'm not above praying for a miracle smile

sue It's good to feel you can be doing something positive, and as duggs so rightly says, you have proved you have good eggs and Scarlet won't be the last, I'm sure of that. Sadly sometimes an otherwise beautifully-developing baby can have something wrong with it, and no amount of effort on your part can do anything to influence that. That does not mean it will happen again - and well done to your GP for referring you to John Radcliffe for a future pregnancy, as frequent reassurance scans can make all the difference to your peace of mind. 40 is definitely not old to be having a baby (just look at abney and kittens for their successes, if not others!) and your chance will come again. I'm mad for still trying at 44, but even I still hope that there's at least one good egg still in there - it's just having the persistence to keep going until you get to it.

ChoccyPud Tue 02-Oct-12 15:17:31

Not been to look on SO thread but, err, Ari BFP??? smile

But I know what you mean about faint lines... Hcg test??

Arianrhod Tue 02-Oct-12 15:28:11

Hey choccy, good to hear from you! It's a bit of a saga (isn't it always?) and I don't like to bore people, but it seems a repeat of what you and I both went through last Nov/Dec. What I call a medium-faint FRER BFP at 12dpo last Thu, exact same strength 3 days later at 15dpo, and again at 16dpo. No lighter, no darker; clearly visible but not strong. Louise suggested to have b-hCGs done when I was supposed to be having ILs yesterday but after speaking with Mr S yesterday morning, Louise said that he'd said no, don't bother with the b-hCG tests but just go for ILs and still have a 6/7 week scan. shrug I did what I was told, I had the ILs (along with having a huge sense of deja-vu), but I am of course almost certain I just threw away £350 sad . Faint FRERs repeated over 4 days cannot be a good thing.

Not meaning to be pessimistic, just taking my own personal experience into account and trying to look at it realistically. Dec's MC started 2 weeks after I go the first faint BFP, so I guess I have to wait probably another 2 weeks yet to find out for definite.

CateN Tue 02-Oct-12 16:49:49

I have started weaning off steroids (from 9 weeks) with great relief as per Mr S's instructions but having done a little reading about weaning off, I noticed that most people start the weaning process at 12 weeks not 9. I should finish weaning at 12 weeks. I am just wondering why this is. Did anyone else start at 9 weeks? Not that it would stop me at this point anyway as my face is so large it can be seen from the moon, never mind moon face grin

GreenOlives Tue 02-Oct-12 18:47:14

Sue if anyone deserves a run of good luck now its you. I completely understand all of your fears but you are not too old and I really feel you will get your much wanted baby one day - and I hope with all my heart that it will happen as soon as you are ready to try again.
Abney Great news!
Ari I have everything crossed for you!
Cate The weaning from 9 weeks is for those on 40mg Pred, I was only on 25mg so didn't have to wean until 12 weeks - hope the moon face disappears nice and quick!

Coopde Tue 02-Oct-12 21:00:46

Ari - Sorry to read your dilemma. I was wondering if your doctor give you an couple of HCG tests over a few days to see what the levels are doing? When I had my BFP earlier this year I was constantly weeing on sticks and thought something was wrong when the good old clear blue prediction date stayed on 1-2 weeks for too long and sadly I m/c a while later. Even a few days after the cruel stick still said pregnant. Sorry, I'm not very clued up on hcg levels but intralipids are not cheap. I just think the medical people sometimes forget how totally consumming and worrying it is once you get that longed for BFP and the phrase 'what will be will be' is one I personally would like to shove where the sun don't shine on one particularly thoughtless nurse I came across last time when I was sick with worry and just wanted an answer. I am sure someone on here will be able to chip in on my suggestion as it may be I'm wrong and a beta hcg test won't give answers at this stage. I am sure your stress levels from worrying won't be helping you.

I'm 3dp3dt and doing my nut. Lots of stomach grumbles today but I'm sure it's all in my mind. Back to work tomorrow which will take my mind off things but also I need to try to keep the stress levels down....

As a newbie, I just wanted to say I am so sorry to Sue. I've read back a few pages and I feel so much for you and your loss.

Ps I can't work out how to get bold for names via my iPhone!

Arianrhod Wed 03-Oct-12 10:33:04

Thanks coopde (and welcome to the thread, think I missed your joining somewhere!). Yes, I could have hCG tests if I twisted my GP's arm, possibly, but I don't think it's worth it to be honest having done exactly this during my early MC last Dec and it proved nothing in the end (hCG rose ok but still ended in MC within 2 weeks). It's just a(nother) waiting game, I guess I could it as a second 2WW, albeit one that's unfortunately unlikely to have a good outcome.

I know what you mean about some medical 'professionals' really lacking in sympathetic patient manner, even those that really ought to know better, like some in EPUs. I will say that I've never had anything other than absolute sympathy and empathy from any of the NLC people, they've always been really good (and most of the nurses don't try to give you false hope, either - when I've explained my fears over faint lines they have always understood and largely agreed with what I've said, although they do try to look on the positive side).

When is your OTD coop, I'm never sure how long after a transfer IVF people are supposed to test? If someone could come up with a foolproof way to distract us for a couple of weeks at a time, they'd make a fortune, I'd buy it for one!

sue Hoping you're doing ok xx

Arianrhod Wed 03-Oct-12 10:40:22

Oh, and to embolden a word put a star * either side of them.

Coopde Wed 03-Oct-12 18:31:12

Ari - well, they say positive thinking helps and negative thoughts create toxins so positivity may win the day?!
My clinic (I am having ivf this time via nhs - my one free cycle) recommend testing 2 weeks after egg collection, so that's next wednesday - one more week to go. I'm feeling every twinge though I fear it may just be the result of sausage and bean casserole! (tmi!).
Went back to work today and it did keep my mind off it in spurts - I think I can manage 10 minutes at a time without having wandering thoughts contemplating the result. I seem to be comfort eating so I've put on a few lbs already in the last couple of weeks, but I'm not worrying about that for now.
Well, fingers crossed all round! Deep breaths! Just when you could really do with a glass of wine you can't!
Emma / coopde

mollieboo Thu 04-Oct-12 10:37:13

abney congrats.

coop really hope you get a bfp soon. The waiting is so hard.

ari hope you're doing ok?

I got an unexpected bfp on monday night. I had a normal period a couple of weeks ago so I stopped the pred. I still tested for a few days and got bfns. The reason I still tested was because I got pregnant in march and still had a period too. Its so strange. But I randomly tested on monday because I felt a bit pregnant and it was positive. Was totally freaking as I've missed 2 weeks of pred now. I did a cb digi test and it says 2-3 weeks, but I think it should say 3+ by now. Im going for intralipids on sat but have no idea if all is ok or doomed, its all so bizarre.

Sorry for long post. Hello to all, hope everyone is ok x

mercator Thu 04-Oct-12 11:57:24

abney and Mollyboo congrats on the good news. Keeping my fc for you both!

sue thinking of you. You sound very stoic and you definately deserve some good luck now. I had to comment on age as I am now 43 so please don't think 40 is too old!!! I hope Mr S and Louise have some good advice to offer.
greenolvies lovely to hear fm you and hope you are all doing well!

Arianrhod Thu 04-Oct-12 12:28:59

Morning ladies, mollie hope you're doing ok this morning - did you go for your ILs yet?

Well just got the results of my and OH's last round of blood tests, for LAD, karyotyping and DQa. LAD and karyotyping all ok, but it seems OH and I are an exact match for DQa, which is not good at all. He is 0201,0303 and I am also 0201,0303. Basically what that means is 50% of any good embryos we produce will be an exact match with me, and my body will destroy it. ILs are commonly used to treat this if you don't already have an issue with NK cells (this 'match' will trigger an autoimmune reaction) but I have of course got very high NK cells even without being pregnant, so the reaction by my immune system will be even higher to one of these 'matched' embryos. I think LIT may be used to counterract this, but I'm not sure - I'm trying to get expert advice on it at the moment - but to be honest even if this is the case LIT is really expensive so I'm not sure we could go for it anyway.

Apparently the autoimmune system attacks the embryo even before it implants, meaning it's damaged before implantation so even if it does manage to implant, it either won't implant properly or it's so damaged that it just can't develop properly.

So I now have a triple-whammy of my age meaning I may have chromosomally-knackered eggs, if an egg is good it has a 50% chance of being a total match for me - if it's not a match my NK cells will try to kill it off anyway, and if it is a match my NK cells will have declared open warfare on the poor little thing right from the start!

Oh, and just to make things worse, the more of these 'matched' embryos that attempt implantation, the higher the level of killer cells that get generated. So, after 5 or 6 miscarriages, I'd say prospects ain't looking too good!

I'll never know if my 'early miscarriages' (or chemical pregnancies, whichever term you prefer) are down to old-age eggs or simple DQA matching.

I have no idea where we go from here - haven't told OH yet as it just feels like yet another death-knoll in the hopes of us ever having a baby together.

But I am glad I got tested for this - at least we know.

ConeyIslandBaby Thu 04-Oct-12 13:31:07

Hi everyone. Can I join you please? I had my 5th mc beginning Sept, all losses between 6-8 weeks. The last one was particularly cruel as we got a heartbeat at 6 weeks but it died soon after. I took cylogest with the last pg and 150mg aspirin.

I got my results from Mr S yesterday, all normal. I feel really deflated, was really hoping to get a reason for my losses. Despite this he's convinced I have an immune problem and wants me to go ahead with the treatment for high NKC (pred and intralipids). Of course I'll give it a go (I'll try anything at this stage). Just wondering if anyone has had a similar experience? I can have more tests but at £700 it seems pointless as I think treatment would be the same if we got a positive result. Obviously it would be nice to know but this is costing so much money already!

Sorry haven't read the whole thread yet but it is enouraging to see the successes on here.

MistressIggi Thu 04-Oct-12 14:30:01

Coney sorry for your losses. This thread has been a great source of support for me. My NKC results were borderline I remember, the high end of normal I think. I was still put on the steroids and my next pg was successful (after 4 losses). Obviously not everyone is so lucky, but don't give up hope just yet.

mollieboo Thu 04-Oct-12 14:43:00

Hi coney, so sorry for all of your losses, I really hope the treatment plan works for you next time even though you weren't diagnosed with high nk cells.

ari I posted about your results on the superov thread, hope you're doing ok, its just so complicated for you but you never know, this one might be the one that sticks. I'm going for intralipids on Saturday, not sure if its a waste but my hubby keeps telling me to stop being so negative. I'm PUPO but don't want to be too positive as its too heartbreaking if it goes wrong.

MistressIggi Thu 04-Oct-12 15:12:41

Ari have just read your post. What a shock for you, I'd never heard of that before, it seems very very unfair. I do notice nothing you've said means that it is impossible to have a baby - and where's there's a chance, there could be a happy outcome.

Arianrhod Thu 04-Oct-12 15:43:36

Thanks iggi (and mollie) ... no, it's not impossible, and I have to keep telling myself that. But it is very very improbable - the odds are just stacked way too high. I'm not quite at give-up point - but really, it's beginning to look like utter madness to just keep on trying, given the odds.

But then, whoever said I was sane .. ;)

Arianrhod Thu 04-Oct-12 15:44:41

Sorry, meant to say, welcome Coney - so sorry for your losses, but there will be an answer, and given his success rate, I hope Mr S holds the answer for you.

duggs1976 Thu 04-Oct-12 17:52:32

Welcome coney and ari I'm sorry to hear your news. LIT is the option I believe. Were these dr G tests? It makes me a bit angry dr a dismisses things and believes he is the ultimate when his tests are very top line and doesn't pick everything up. All I'd say coney in my humble opinion is a year ago I took having High NK cells as my answer but it seems now a year later and no luck I had other issues. Is a bit of a gamble but if I was being 100% honest I would go for dr gorgy tests that look a lot deeper. If dr s thinks you've got immune issues hasn't he better then back it up and suggest which ones? Up to you and depends on £ as usual but a few of us have gone further and revealed other issues. PM me if you'd like more details.

Arianrhod Thu 04-Oct-12 21:45:23

Thanks duggs - no, these were through Mr S, I requested them and he was happy to do them. If I hadn't specifically asked for these tests though, they wouldn't have been offered.

Arianrhod Thu 04-Oct-12 22:08:30

Oh lord, it gets worse. I misread our LAD results, it seems our LAD results are very bad too - seems I have virtually no 'blocking' antibodies against OH and as such my body doesn't recognise any embryo with him as 'foreign but ok' - and as such, goes all out to kill it off (again).

<quote>
As half the embryo’s DNA comes from the mother, the theory is that if the body cannot recognise the father’s DNA, it will treat the embryonic cells as ‘altered self’ and trigger an aggressive NK response which will increase NK numbers, NK activity and/or TNFalpha levels.  High levels of anti-paternal antibodies should mean that the body recognises embryonic cells as ‘foreign’ but ‘benign’.  Low levels of anti-paternal antibodies are associated with repeat miscarriages (which are believed to be the result of NK and TNFalpha responses to embryonic cells), and are also thought to be associated with repeated failed implantations.
</quote>

Bl**dy hell, just as I thought things couldn't get any worse sad

duggs1976 Fri 05-Oct-12 08:58:16

ari forgive me if I speak out of turn but these tests dr s reluctantly gave you are standard for dr gorgy. He has treatments for them - injecting DP blood anti bodies or something similar. Not particular cheap or pleasant I don't suppose but if you want to throw the book at this so to speak I would strongly recommend £130 investment in a consultation with him ASAP (tell receptionist u r pregnant and have Had LAD) etc am sure he will see u and at least u r talking to someone more experienced in successes in this field. He worked closely with dr beer when he was still alive.PM me if you'd like more details but just thought I'd mention it isn't necessarily the end of the road.x

Arianrhod Fri 05-Oct-12 09:30:55

Thanks duggs appreciate it, of course you're not speaking out of turn! I know they're standard tests for Dr G, there's a very big part of me that wishes to god we'd gone to him in the beginning because we would be where we are now a year ago if that had been the case, and not have had all this financial outlay and heartbreak. I'm not now pregnant, I tested this morning and it's negative.

The problem with LIT treatment is if you also have a 100% DQa match, as we do, then paternal LIT stands very little chance of working anyway. You get injected with white blood cells from your partner, in the hopes of triggering antibodies within yourself against your partner's DNA so that your body recognises an embryo with his DNA in as significantly different to your own. But if you also have a high DQa match, the chances of you developing antibodies (against something that is after all genetically very similar to yourself, which is the DQa bit) are very slim. So it would have to be donor LIT, ie white blood cells from someone other than my OH - which I'm really not comfortable with. I understand Dr G charges £1500 for 2 LIT shots plus £270 for blood tests before - and even then it only lasts maximum 6-9 months. That's almost £2000 on something that has only a very slim chance of working. You have to ask yourself, how much more do you throw at it, especially with so very little a chance of working? And that's without the already-aggressive immune system and blood clotting issues I also have.

We talked about all this last night; with the DQa match perhaps we'd have carried on, since there was still a 50% chance of a non-matching embryo. But our LAD results were so bad - the lowest I've ever seen, and I've read a few results from ladies who have had this done and were considered low; I don't just have a low reading for antibodies, I have virtually none - and the chances of paternal LIT working is so very remote, that we have to face the reality there is virtually no chance of us ever keeping any good embryo we produce.

OH wants me to keep my appt with Mr S in 2 weeks, just to hear what he has to say, but in truth I cannot see without putting ourselves through huge amounts of more treatment at almost as much a cost of full IVF treatment that we can ever be successful. I think we just have to accept this really is the end of the line for us.

Arianrhod Fri 05-Oct-12 09:37:46

Sorry, I didn't mean to sound doom-and-gloom - I will see what Mr S has to say, and I will investigate whether going to the Serum clinic for LIT is an option (it's a LOT cheaper) - but I think in reality the odds are just too damn stacked against us.

ChoccyPud Fri 05-Oct-12 10:16:55

Ari that's really saddening to read. So much for the benefits of being soul mates/ very similar to one's OH eh?! Also sad for the bfn this morning. I know you'll say you were expecting it but still...

I also take on board what Duggs says about other experts going deeper with their standard tests. From my perspective I'm prepared to give it another go with Mr S now I'm on the cusp of That Time again. Also I don't want to waste the half dose of Humira! But if the same thing happens again then time is marching ever onwards and I owe it to myself to explore other options. Saying that I'm not sure I'll be able to bring myself to do some of the more aggressive things. DH and I would have to decide how much we want to put ourselves and my body through...

So much to think about. So unfair! Big hugs to you Ati. It really sucks. Take some time to consider your options xx

Havingkittens Fri 05-Oct-12 10:58:50

Ari, I'm so sorry. You've been on such a rollercoaster recently with all the various tests and then your recent BFP, and now, to be faced with this must be devastating. I can well understand the reluctance to put yourself through anymore heartbreak and physical stress.

Sue, you are still in my thoughts. I have every faith that you are still very much in with a good chance of a healthy baby. More often than not these anomalies, or chromosome abnormalities are just a random chance thing that happens when one particular sperm meets one particular egg. The chances of the same thing happening again, I suspect, are very unlikely. Perhaps you can get your consultant to refer you for genetic counseling for reassurance?

Welcome to Coopde, wishing you the best of luck with your pregnancy. When is your next scan?

Welcome also to Coneyisland. Good luck with TTC.

Buster, how did your Nuchal go? I was hoping to hear from you on Wednesday. I hope everything's OK.

Abney, so glad to hear your scan went well after your earlier worries.

Cate, I'm on the higher dose and started weaning at 9 weeks. I'm actually on my last pred today, although I have a few 2.5mg ones that were my granny's which I may take for a couple of days after as I have had absolutely stinking headache pretty much every day whilst coming off the pred. They seem to get more and more consistent the lower the dose so I'm pretty worried about the next few days of coming off completely. My moonface seems to have calmed down considerably over the last couple of weeks too, thank god! There is a chance that my headaches may also be down to the tension of the last couple of weeks with my Nuchal/CVS etc.

Talking of which, I'm hoping those of you who are further along than be or recently pregnant can help me with this. I have been having a lot of twinges and crampy feelings over the last couple of weeks. Since I had my CVS really, which is why I'm concerned. The timing may be a coincidence and I'm hoping it's nothing more than the "round ligament pain" or stretching pains I keep reading about but they have been pretty much every day and go on for quite a long time. I thought these stretching pains came and went quite fleetingly. I was awake with them at 5 this morning and have them again/still now. I haven't had any bleeding, although I've only had bleeding with one of my miscarriages and that was a good 2 weeks after the heartbeat stopped. I do still have sore knockers, constipation, inflamed sinuses etc so all symptoms are still present but I can't help worry about the fact that these pains all started after my CVS. My next scan isn't until 26 October. I've spent so much money this month on the FMC, Intralipids etc that I'm reluctant to spend more on another private scan only to find out it's just growing pains! So, anyone else, do these ligament pains come and go for hours each day?

mollieboo Fri 05-Oct-12 11:03:08

ari so sorry to hear about your results and your bfn today. Its all so complicated and there are so many obstacles for you. I hope you get some more treatment options which are right for you both so that you have the choice to carry on.

Im also starting to mc today. I woke up spotting and bought a clearblue digi which now says 1-2 instead of 2-3. I feel pretty empty but im glad I only knew I was pregnant for 4 days. I did miss taking pred for 2 weeks as I didn't know I was pregnant so if that's the reason then I can live with it. It must sound like im stupid but I had a period and still tested for a few days into my period and got bfn's. But I know from being on this thread that there are quite a few other reasons it might be happening too so its hard not knowing if you're doing the right thing. Im just going to try again as soon as we can.

Hope everyone else is ok.

Arianrhod Fri 05-Oct-12 11:45:22

choccy, kittens and mollie Thanks so much for your good wishes. choccy Fingers crossed for you that you don't have to consider the extra testing, I hope this renewed attempt brings you the success you deserve!

mollie So very sorry to hear you're going through this too. It's just rubbish to have hope and then have it taken away. Fingers crossed for you too that the next cycle brings success.

sue Also still thinking very much of you, and hope you're doing as ok as you can be right now.

suemays Fri 05-Oct-12 11:59:17

Ari and Mollie so sorry to hear you are now no longer pregnant. This awful ride does suck for some of us and seems to have no end in sight. Go and get some bottles of wine - merlot has helped me get through the last week! I should take out shares in wine at the moment.

Ari I would go and see Mr S as planned but take Duggs advice too and book an appointment with Dr G for a 2nd opinion as you dont want to look back in the future and think maybe we should have tried once last go with him. I really feel for you as part of the grieving process with any loss is the realisation that you might have to give up, so you are grieving all the lost chances too.

Kittens I had the stretchy and crampy feelings around the same time as you so dont worry. Have you got a doppler to put your mind at rest? That really helped with me. Saying that, it didnt change the outcome as I think you will worry all the way through. Maybe you should ask for some extra scans? You could lie and say you have had some spotting???

We have got a funeral booked for Scarlet on Tues 16th October so I will be able to finally say goodbye to her. I am still cuddling her teddy at night and talking to her but every day is getting a bit easier. Roll on December when I can start TTC again. Not looking forward to it all again to be honest!

Waves to everyone else xx

Arianrhod Fri 05-Oct-12 12:12:21

sue Good to hear from you, and will be thinking of you on 16th October. xx

mollieboo Fri 05-Oct-12 12:24:20

Thank you ari and sue. I will be hitting the wine tonight. I am so f*cked off with life today. My 6th mc, my 3rd since losing my baby boy in jan.

Sue, I hope the funeral for baby scarlet goes ok for you, as ok as it can do. It feels as though no-one should have to arrange their baby's funeral, but we do and it is so heartbreaking. Im so glad you're feeling a bit stronger now. Its very frightening trying again isn't it, but we have to go through all of the fear to get to the good bit.

kittens I have a summer prenatal listening system, I bought it off ebay, it was pretty cheap and I could never find a heartbeat, but my baby was tiny so that may be why. You are more than welcome to it but I wouldn't want it to cause any more worry that's all. If you want me to post it to you then pm me your address. A midwife said not to use it too much in case its dangerous to the baby, I really don't know if there's any truth in that.

ConeyIslandBaby Fri 05-Oct-12 14:04:57

Hi everyone, thanks for the welcome smile

So sorry to hear your news mollie and Ari. I second the wine theory. After my 5th I think I drank solidly for a fortnight. Pretty unhealthy but whatever it takes to get through in my opinion. Sue I've been reading back through the thread and was in tears reading your posts, I am so sorry for your loss. I'll be thinking of you on the 16th.

Duggs thanks, I will pm you. I agree with what you said about Mr. S. I was quite disappointed with his approach and thought he was full of bluster and didn't really know what to do next. Seemed to be grasping at straws which doesn't fill me with confidence in the treatment. However, because I'm about to ovulate and my clock is ticking loudly I think I'll defo try the steroids for the next 2 months and hopefully get one in the oven before xmas (famous last words). In the meantime I'll have a look at Dr Gorgy info....

Hi kittens and anyone else I've missed!

Havingkittens Fri 05-Oct-12 14:27:55

Mollie, that's really sweet of you, thank you. I do worry that not being able to hear anything simply due to not knowing how to find it properly will cause more anxiety than reassurance which is why I've not looked into dopplers before. Well, that and the fact that I seem to have been having scans every 10 days or so up to now! I'd love to know what others think of using them, although I suspect that those who have used them are too busy looking after their little ones now to come on the thread anymore!

Arianrhod Fri 05-Oct-12 14:52:55

kittens Although heaven knows it seems I'll never get that far now, I had planned to get a doppler myself to monitor the heartbeat, but only after I think 20 weeks, I understand it's too difficult to hear before then. I know it's something of a knack to use them, but for me personally I think the peace of mind using one (once you've got the knack) outweighs anything else. Just my tuppence worth.

Havingkittens Fri 05-Oct-12 15:06:54

Yes, I've read that about them being tricky before 20 weeks. I also had a look on Amazon at the one you've got mollie and it seems the general consensus is that that one is not very reliable for hearing a heartbeat and can cause a lot of stress and worry.

I just emailed Louise asking her about my concerns and got an out of office reply to say she's not there 'til Tuesday. So much for me trying to reassure myself before the weekend! I shall just have to be positive and assume that all is fine. I just thought these round ligament pains were supposed to be fleeting rather than happening every day throughout the day and night. Maybe I should post on the pregnancy board.

mollieboo Fri 05-Oct-12 15:23:21

Ok thanks kittens I think I'll throw mine out in that case as its only going to cause distress to me or someone else.

I was a paranoid wreck when pregnant and inbetween scans would ring the community midwives. One of them would always pop round to the house and find the baby's heartbeat, I saw them every week. So could you do that if worried or ring them about the pains to ask advice? Im pretty sure louise at the clinic doesn't work fridays.

Havingkittens Fri 05-Oct-12 15:29:17

I don't have a midwife yet as I've had to reschedule my booking in appt twice and it's now next Friday (at 14+3!). Mind you, as I've had my Nuchal privately and am having a 16 weeks scan with Mr S that shouldn't be a problem. My GP did say I could make an appointment with him to use the doppler although it always seems to be at least a 2 week wait to get an appointment with him which is a bit pointless in this case. I might pop by there on my way to the supermarket and see if they can get me in on Monday or something. I can't imagine a midwife coming to my house. I live in Central London, I'd imagine they were a bit overstretched round here.

mollieboo Fri 05-Oct-12 15:55:47

Yes its probably a lot different there to the little welsh village I was living in! Sorry didn't think about that. Hope you get somewhere with the docs. Its awful being worried over a weekend, as sue said could you go to your epu? Im sure with your history and if you explain that you're having some pains they could scan you for some reassurance? Just a thought...

Havingkittens Fri 05-Oct-12 16:42:41

I'm away over the weekend but I'm going to try and chill out. Someone answered my post on the pregnancy board saying she'd had the same, lasting all day on and off through pregnancy. I guess I'll just have to get used to it. They are shooting twinges either side of my uterus which sounds pretty consistent with ligament pain rather than the type of cramps I've had with miscarriage. I'm just being a bit of a worrier I think.

mollieboo Fri 05-Oct-12 16:45:09

That sounds really encouraging. It shows everything is growing too I guess. Positive vibes to you, have a great weekend.

ChoccyPud Fri 05-Oct-12 16:45:45

Just very quickly to say mollie I'm so sorry to hear your news. I did same as you a year or so ago - had a chem pg without realising I'd conceived. Don't feel silly. It taught me to do tests from about 12dpo and keep testing until ~15 dpo or so when you'll probably have at least a faint bfp if you're pg but if you haven't done more than 14 days on Pred you can stop without weaning. It's juggling the testing and Pred basically! And keeping FRER et al in business. Btw clearblue digi are notoriously unreliable IMO.

Hope that makes sense.

Thanks Ari smile

kittens I'm sure all is well though I'm afraid I cant help with the pains... Speak to someone at your local epu? Or NHS direct? Or pm free, or one of the others who've had babies and may not look on here much any more. I'm sure they'll be able to help.

sue I'll be thinking of you on Tuesday. And agree re the red wine drinking! Xx

ChoccyPud Fri 05-Oct-12 16:47:16

X posts. Kittens I hope that's offered some comfort x

Havingkittens Fri 05-Oct-12 17:05:28

Thanks everyone. Yes, I do feel a bit better having had that response. I think it didn't help that I woke up so early as my OH was leaving for the airport at 4.20 this morning so was lying in bed wide awake with these twinges. Prime time for worrying, when you're just lying in bed with nothing to distract you! Strangely, I've had no insomnia problems at all with pred since I started taking it in April last year but whilst I've been weaning off it I am having the waking in the early hours and not being able to get back to sleep issue. The nocturnal toilet visits probably don't help!

mollieboo Fri 05-Oct-12 17:25:44

Thank you choccy, good to know im not the only one. I will be stocking up on superdrug tests, they're not too expensive and are meant to be good. Any opinions gratefully received. I'll just have to test right through the month I think as I've been caught out twice now.

Im seeing mr s soon, but does anyone reckon my mc is because I stopped pred around time of implantation for two weeks? I guess it would be the crucial time to take it. Also what is a chem preg compared to an mc please? I was 6 weeks pregnant today. Thanks for any advice...

Im too scared to go back onto the superov programe now as I took letrozole this month without realising I was pregnant which also can't have helped at all, which is a shame but I still got pregnant on pred which is of some comfort. Sorry for me me me post, there is a lot going on in my head today.

ari you sound like a woman on the case, hope you're doing ok and feeling a bit more positive after doing some research.

kittens yes 4am is definitely prime worrying time!

Havingkittens Fri 05-Oct-12 18:10:16

mollie, as far as I understand chemical pregnancy is a very early miscarriage, possibly where you get a BFP before your period is due and then your period comes later than you expected it because the embryo has failed to implant, whereas a miscarriage is where the embryo implants but fails to develop so miscarries some time after your period was due.

The general advice is to test at 10dpo so you can either come off the pred if you're taking it from ovulation or start/continue taking it if you get a BFP. I was using the internet cheapie tests which I always find to be pretty reliable, even though the lines can be very feint on them before 14dpo. I think this time I got my extremely feint, but definitely there, line at about 11dpo and they work out at about 10p a pop which is definitely favorable to forking out for FRERs! This is where I get mine from www.homehealth-uk.com/medical/pregnancy-tests.htm - just the strips in a little foil pouch. They come in 10mIU/ml too which is the highest sensitivity. They also do OPKs which are nice and cheap if you're going to try without superov and you can buy them in a combo pack with the pregnancy tests, choosing your own combination.

I think you should be fine on the superov if you test early from now on. I actually used to cut it pretty fine with ordering my meds as I didn't want to spend the money on them if they weren't needed so I'd test early and only order them if I got a -ve the day before AF was due! Also, if you're really concerned speak to Louise. I used to sometimes start the meds a day or two later than others I'd seen on here and she said that wasn't a big problem so if you're worried about taking letrozole when you may already be pregnant that might be an option, just to make sure.

I'm sorry this one didn't work out for you. It's been a right old week for a few of you on this thread. I hope you all have very self indulgent weekends and enjoy some lovely wine.

Coopde Fri 05-Oct-12 18:19:41

Evening all,
Just had a catch up read of the latest posts. I'm terrified by the hurdles everyone is going through and trying to stay positive that Dr S has nailed my treatment first time so I can get that BPF on Wednesday (5 days to go). I'm trying not to google LIT or Dqa as knowing me I will convince myself that's what I've got too and lose that all important hope that this time it might work.
Just thought I'd mention, there is an early pregnancy clinic at st George's, Tooting (lanesborough block?). They scan from 6 weeks and you can just rock up and self refer without seeing your GP first. They scan from 8am but it can be busy so get there really early and wait your turn. My accupuncturist used it a few times herself when pregnant and it really put her mind at rest between scans.
Logging off for today so I can concentrate on my mantra chanting positive thinking (!!). Thinking of you all.
Emma / coopde
X

GreenOlives Fri 05-Oct-12 19:13:02

Hello ladies, sorry to read all the bad news over the last few days, indulgent weekends definitely sound like a good plan to drown sorrows and treat yourselves sad
Kittens sounds like round ligaments pain to me so please try not to worry. I bought an Angel sounds doppler from ebay (was about 20 quid) I have been using it successfully since 13 weeks. Took me about 20 mins to find it the first time but since then (and knowing roughly where to try) I've always found it almost immediately. Its been very reassuring. And I discovered today I have an anterior placenta which means doppler is usually more difficult.
Had my 20 week scan earlier - all looks perfect. To say Im relieved is an understatement smile
I hope that this thread sees another run of good luck soon - its overdue. Xx

Havingkittens Fri 05-Oct-12 19:25:00

Fantastic news about your 20 week scan GreenOlives. I have half breathed out since my Nuchal but the rest of my breath is waiting for the 20 week scan too!

Thanks so much for the reassurance and for your feedback on the Angel Sounds doppler. That was the one I was considering if I do get one. £20 sounds like a good price for my sanity! Especially in the longer gaps between scans.

mollieboo Fri 05-Oct-12 19:58:21

olives wonderful news re your scan, congrats.

mercator Sat 06-Oct-12 08:24:27

Morning ladies

kitten I have a Sonoline Doppler if you are interested. I managed to hear my dd from around 9 was or so on it and you are welcome to it. You just need some gel which you can get fm amazon! I'd like it to go to someone on here as this board gave me great strength and hope during my last mc and pregnancy.

molly and ari so sorry you are going through the heartbreak of another mc, it's so painful and I can definitely understand the wine as I think I must have drowned my sorrows each time plus painting a room in the house each time to take my mind of things.

sue will be thinking of you on the 16th!

greenolives congrats on the 20 wk scan, lovely news.

coopde. Good luck with testing fc crossed for you.

Waves to anyone I've missed.

mollieboo Sat 06-Oct-12 09:42:09

Thanks merc. Hope you and your little one are doing well.

Thanks kittens for all of the info, I'll try the ic tests from the link. Trouble is I did test early and throughout my period this time, and got bfn's until quite late on. So I will keep testing throughout with the cheap tests. I guess getting a bfp so late is a bad sign really.

I had spotting yest and cb digi weeks reduced and now nothing is happening, no spotting, no pain. I cant stop worrying - should I take pred, do I need an erpc etc etc.

Hope everyone is doing ok.

ChoccyPud Sat 06-Oct-12 12:35:18

Mollie I'd suggest you get your hcg levels tested, twice two days apart. That'll at least mean you can see where the levels are and what direction they're going in. It can take a while for things to happen. Also it'll flag up if it might be ectopic. I don't want to panic you about ep, I know how confusing it can be with intermittent bleeding, which could be implantation, could be mc, who knows, but its best to check for ectopic sooner rather than later. This is when we need CCTV in there! So sorry you're going through this. Hugs.

mollieboo Sat 06-Oct-12 14:59:22

Thank you choccy, I was trying to avoid hospital visits but I think I had better get some blood tests done on monday at epu or docs. It always seems to happen over a weekend. You're right, I do need to rule out an ectopic, best to know before it gets worse. Yes cctv would be amazing, isn't it horrible being in limbo not knowing what's going on inside you! Thanks again for advice and virtual hugs.

Coopde Sun 07-Oct-12 16:20:27

Hello
So, tomorrow I will be 9dp3dt..... Is it too early to test in the morning? I'm doing my nut! I've been knicker checking all day and have stomach cramps...
DH says I should wait til Wednesday, but I'm not sure I can hold out much longer! Patience is not my middle name! I've googled so much how soon to test and get varying responses, so I thought best to ask the experts!
Emma (going slightly mad!)
Xx

Buster76 Sun 07-Oct-12 19:45:10

Hello all!!
Sorry about your bfn ari and your results - why does everything have to be so complicated and unfair!! sad
Sad for mollie too

Congrats to greenolives - it must be such a relief to get to 20 weeks!! smile
emma - it is so very tempting!! I'm like you I could never wait, like a child at christmas!!

kittens thanks for thinking of me! It does sound like your uterus is stretching, which you can kind of understand when you think how much room that little baby is going to need. Although I know its all still such a worry, you just want someone to tell you its going to be ok.

I have had a bit of a scary week sad I was at work last Monday and passed some weird mucous plug confused Managed to get scanned at my MAU - all fine, got very emotional - the baby was moving all over the place! 11weeks!
Went in for nuchal on the Wednesday, they decided it was actually a bit early so wanted to wait till next week. Anyway went to empty my bladder after they decided this - blood!!!! Not loads but a decent amount mixed in with some pessary! Nice! I was passed myself, I told the midwife, who I think could see i was so worried. The sonographer said they would scan me quickly just to check all was ok - it was thank god!! But now I'm soooo worried that was the beginning of the end!! I have always started off with a bit of bleeding before the baby has died sad I was hoping it was just the pessaries that have caused some irritation so have been using the back entrance. Ive had no more bleeding but my constipation has gone!! And my nausea has eased off which I know they say they do around this time. I have my nuchal booked in for Tuesday. So very nervous. I thought getting to 11 weeks was such a milestone - I wish I knew what was going on!! The sonographer said as I have a bicornuate uterus the blood may be coming from the horn that isnt been used?

Sorry for long post!!!

D xxxx

LJ71 Sun 07-Oct-12 20:53:20

Oh Buster - fingers crossed everything's fine.

I've had a mad few days as my OH is spending his 4th night in hospital having been rushed in with a v v sore throat. They're not quite sure what's wrong, but it may be a severe infection of his lymph gland.

Hopefully he'll be home tomorrow.

Apart from spending all of a gloriously sunny weekend at the hospital, I've spent a fortune on parking there. Not to mention the fact that I'm so overtired where I've been anxious about him and not sleeping brilliantly.

LJ71 Sun 07-Oct-12 20:54:02

Here's to a better week! xx

duggs1976 Mon 08-Oct-12 10:22:16

Coopde I would say you'd be ok to test today...tomorrow for sure.
With my IVF I got a BFP at 8dpt (3day transfer) 2 chromosonally chekced embryos. I mc a week or so later but still with IVF or FET there is no ambiguity around dates. Best of luck.. but pls don't be too disheartened if you don't get what you hope.. there are still so many other factors other than immune factors that will determine if assisted fertlity works. I am learning the hard way. have my fingers crossed for you though x

Coopde Mon 08-Oct-12 10:48:09

duggs thanks, I did cave in and tested this morning on a clear blue digital and got a BFN. However, I know it's not over til the fat lady sings! Off to Boots to stock up on FRER for tomorrow and Wednesday. Still hoping. If it doesn't work I'm not sure what our next steps will be. We've got one in the freezer, but as time is marching on I wonder if we should do another fresh cycle again. Well, things to contemplate over a bottle of wine if the time comes (and I can't wait for nookie again!!).Still got stomach cramps but not sure if that's good of just my endometriosis doing pre period grumbles. Well, keep everything crossed, I hope to be the bringer of good news this week.
X

mollieboo Mon 08-Oct-12 13:04:40

buster that sounds very scary, hope you're doing ok. I also have a bicornuate uterus, and the past two pregnancies I've had a period in the early weeks. I wondered if its due to that, as I've read that one horn might not realise the other one is pregnant. Don't need that on top of everything else though do we?!

lj hope you're oh is on the mend.

coopde its torturous waiting to know, must be even more so if you've gone through ivf. Hope you get a bfp v soon!

Hello to everyone else.

Havingkittens Mon 08-Oct-12 14:16:56

Oh my Buster, what a stressful week. I rarely use cyclogest up the "visitors" entrance but have had a slight bit of blood on one of the occasions that I have so maybe that's what's caused it. I really hope there's a simple explanation and that all is well at your scan tomorrow. Do let us know how you get on. With regards to your symptoms, they can fluctuate throughout pregnancy.

Mercator, that would be amazing but it's quite an expensive one you've got. Can I offer you some money for it?

Coopde good luck with testing over the next few days. I hope you get a BFP.

Coopde Tue 09-Oct-12 09:28:06

Another BFN today. OTD tomorrow, but not holding out any hope.
Trying to hold it together at a meeting for the day but just cried in Asda when I spilt my coffee so it's going to be a long day!
As for next steps, I have no idea - another fresh cycle or use the frozen? Looks like we will be swapping to new life now our NHS funded cycle has been used.
Hope everyone has a better day.
Emma x

Arianrhod Tue 09-Oct-12 10:35:34

buster Hope all goes well for your scan today. I'd echo what kittens said - I understand using the visitor's entrance for cyclogest can cause irritation and I know of others who have had minor bleeding because of it. Using the tradesman's entrance seems not to cause issues. Hope that's all it was for you too!

Buster76 Tue 09-Oct-12 20:48:25

Hello!!
Thanks for all your kind words and support!!
Painfully had to wait till 3pm for scan.......but thankfully all good!!! Such a massive relief!! Nuchal fold was 1.4mm so hopefully thats positive too, fingers crossed bloods come back ok too. Hoping it was probably down to using the visitors entrance so it will be the tradesmans from now on!!
So off to Epsom tomorrow for my lipids!!

xxx

Clabbage Tue 09-Oct-12 22:23:44

Happy congrats to buster and greenolives on such great scan news. kittens woohoo for a great nuchal result. So pleased to see that all is ok for you too abney. I feel sure I have missed someone for which I apologise!

Sad to see that a few of you (us) are experiencing the misery of miscarriage (again) and the awful toll of bfn's particular those of you on the ivf route, just so many layers of disappointment.
ari I'm sorry that your results weren't more positive...oh for a crystal ball to know if this heartache is worth it.

sue I think of you and Scarlet often xx I wish you the greatest of strength and peace as you lay Scarlet to rest.

mercator Wed 10-Oct-12 07:02:17

Hi All

Buster what a relief the scan must have been. Glad all is well.

kittens pm your address and I'll pop it in the post. May take me a day or to to get it in the post but would be nice for it to go to a good home on here. May need new batteries but I'm sure you can sort that out. Don't worry about any money just feel free to pass it on when your finished with it.

coopde sorry to hear your news.

sue thinking of you.

Waves to all.

Arianrhod Wed 10-Oct-12 11:53:12

buster Fantastic news about your nuchal scan, and a big relief!!

sue Hope you're ok after yesterday, and that you gave your little one a beautiful laying-to-rest time.

clabbage If you ever hear of anyone with that crystal ball, please let me know, I'd give a lot to know if this will all be worth it in the end!!

Havingkittens Wed 10-Oct-12 11:53:58

Great to hear all is well Buster. What a relief!

LJ, how is your OH? Have they managed to find out what's wrong?

I'm off on holiday on Sunday for 10 days. I can't wait! I don't need to get a letter from my GP for flying at this stage do I?

Arianrhod Wed 10-Oct-12 11:59:16

Oh damnit, I just realised sue that Scarlet's funeral is next Tuesday, not this week. So sorry, and still thinking of you for next week.

Coopde Wed 10-Oct-12 19:03:14

Thanks for the kind words mercator and clabbage.
I don't know where we get our strength from. There's so much sad news and we are all back on the roller coaster as soon as possible.
I'm so organised, I've booked to see Mr S and sorting out plan B for FET before Christmas hopefully.
Had a rubbish day, ending with a row with my mum when I asked her to stop telling every Tom dick and Harry (including mums of people I went to school with who hated me!) our personal ivf fertility details. I know she finds strength talking it through with people - I know that - hence writing on here, but really, the small town doesn't need to know my business (and I know she's doing it to be the centre of attention!). That will be her not speaking to me til Xmas! Joy!
I have a glass of Rioja ... Every cloud.
Well, I'm going to keep reading on here and popping in to see how everyone is doing. Is anyone else having intralipid etc with ivf?
Emma / coopde xx

duggs1976 Thu 11-Oct-12 07:13:03

coopde a bottle of Rioja sounds more appropriatewink I know how u feel. Words can't describe the crashing feeling after going through IVF plus all the intrallipids and steroids and clexane injections so you look like a battered woman for it to fail. The fact dr s is soooo confident can be a little misleading - tbh there are other things even in his world of immunology that are wrong and need to be addressed or wrong and can't be - I'm sure not intentionally but sometimes his approach can seem a little cruel. Have you been pregnant naturally or assisted before?

LJ71 Thu 11-Oct-12 07:15:44

Kittens thanks for asking. My OH finally came home on Monday night after 4 nights in. He in the end had v severe pharyngitis, but they were concerned it was a retropharangeal absys, which could have been v v nasty. He went through loads of drips to rehydrate him, plus to give him antibiotics intravenously. Had lots of injections in his tummy to thin his blood (apparantly that one really hurt), iv steroids which really stang. Plus obviously pain relief. But ... he is now home and slowly recovering. He's signed off for 10 days but I am sure will try to return to work next Monday.

Maybe a good job we weren't successful last month (af in full flow now!) as I'm sure his sperm weren't top quality!

Thinking of you all, with good and bad news xxxx

Coopde Thu 11-Oct-12 07:51:08

duggs
It's a fine balance to stay positive and realistic while having ivf. I'm 38 so the statistics are only about a 19% chance of success irrespective. We've been trying 3 years and only pregnant once after ivf in May but then m/c shortly after. We've never had an explanation about why we can't get pregnant naturally, my eggs are good quality and DH is fine. Finding out i have high NK was the glimmer of hope that I thought might explain why. As you say, mr s was quite confident that he'd nail the problem and I was really hopeful.
I tested again today in vain hope as no AF still - still negative.
DH wants me to take time out and try naturally for a few months but I can't contemplate wasting a month let alone a few months so hopefully FET before Xmas. I don't know where I am getting my motivation from - urgh - the thought of another 2ww!!!
Meantime, hoping to loose a few lbs..... Feeling very middle aged, frumpy and miserable. I had that glass of wine last night and it just gave me a thumping headache!
Well ladies, keep calm and carry on as they say!
Emma / coopde xx

duggs1976 Thu 11-Oct-12 08:11:29

coopde hearing you loud and clear. It might comfort you slightly as it did me when a friend gently reminded me we all have 20 to 25% ( 25% if under 30 and no body is under 30 these dayswink) chance of conceiving naturally each month. It isn't very high as we're not designed to be high multiple reproduces as our survival rates are so high. So 19% isn't too far off a natural cycle. BUT after going through a round I thought I could handle it after all the immunology stuff. I Totally underestimated it and would say is one of the most difficult things to go through. ( grief etc aside) that just comes after when it fails. I would ask again about your NK results what did they come back as? I discovered other issues with dr gorgy as he is much more in depth than dr S and tests other things like hidden infections and sperm DNA fragmentation - all sent off to america.

Arianrhod Thu 11-Oct-12 08:26:22

coopde I thought I'd just chime in here and second what duggs is saying. I'm not doing IVF, but from a testing point of view, much as I really like Mr S and hold him in high regard, there are quite a few things he doesn't test for that Dr G (and others) do - and they can all have a huge impact on your fertility/ability to get/stay pregnant. I hear you about the time pressure - no-one more so than me! - but honestly you need to know that you're not wasting your energy in doing IVF and all the strain that goes with it if you have other issues that are thwarting you. If your eggs are fine, and your OH's sperm is fine (has it been tested for DNA fragmentation, btw? doesn't show up in normal tests), then yes it might be high NK cells stopping you - but it might be something else alongside them too. TNF-a, DQa, hidden infections, LAD count, all may be relevant (and there may be other things too).

Not presuming in any way to tell you what to do, obviously!, just that there are other things that Mr S doesn't routinely test for that may potentially be having an impact.

And 38 is still young ... I had my DD 2 days before my 39th birthday, and she was a complete accident, I hadn't been TTC at all, just a one-off that really shouldn't have happened (but obviously now I'm glad it did!). Ok, so I'm struggling for a second - but I'm a lot older, and have issues now that I clearly didn't have back then. All I'm saying is, time isn't really against you yet, so you could possibly afford to take a bit of time to make sure you have the complete picture, IYSKIM.

/waves to everyone

Arianrhod Thu 11-Oct-12 08:27:17

Sorry, meant to say, LJ so pleased your DH is on the mend, it all sounds a bit scary what he's gone through.

Coopde Thu 11-Oct-12 18:31:17

Ari and Duggs
Thanks for your kind words and advice. I really do appreciate the feedback. It's good to be told to take a breath and consider other tests, as much as I'm digging my head in the sand as I really don't think I can face more bad news, I know I need to know and not waste precious money on treatments that won't work if there are hidden issues.
So the additional tests you mention, do you think NL won't offer such tests? Just wondering now if I should not spend the money seeing NL and go straight to Dr G?
My head hurts!!!

Arianrhod Thu 11-Oct-12 20:12:57

It's difficult to say really, I can only speak from my own personal viewpoint after having been with Mr S since my third miscarriage July 2011. If I knew then what I know now, after all I've been through since that first appt with Mr S, much as I rate him (and I do), I would have gone to Dr G instead. He believes in, and tests & treats, for so much more than Mr S. I wish I had had all the testing I've subsequently had to research for myself and specifically request or else go off on my own to get done elsewhere .. some of which Mr S still pooh-poohs the results of but Dr G treats for.

Obviously this is only my own personal view, and what is right for me may not be for you - but If I were doing it again, I'd be going straight to Dr G. YMMV smile

suemays Thu 11-Oct-12 20:37:32

Coopde my mum is another one who likes to broadcast my bad news. We went to theirs for a BBQ 2 days after I had my awful 20 week scan and one of their neighbours came over and started asking me about the problems that had been found. I had told my mum to keep it quiet until we knew what was happening. I just burst into tears and ran into their house as couldnt talk about it. She has also told all of the customers and staff in the hairdressers where she works and (like you) mums of people I went to school with who I never liked. I was so angry with her as there are some things you dont want to be broadcasted. My mum likes to play the victim so they sound very similar!

My friend just had twins through IVF and she is 40 so you still have time. A midwife at the hospital told me she saw a first time mum of 55 with twins so it can happen if you are older.

I still believe that persistence pays off. My doctor said to me 'there is always hope if you are prepared to keep trying but there is no hope if you give up'. Obviously that doesnt take into account the cost factor! Its hard but I think you have to try and keep as positive as possible inbetween the miscarriages and whole TTC game.

I would say to get the hidden C tests done with Dr G like Duggs has done whilst you are waiting but maybe try the FET on Mr S's treatment plan. I know one of the ladies on here was using the ARGC clinic for immunes (plus they can do IVF with the immune treatment plan) but it is a lot more expensive and time consuming than Mr S as they use additional drugs and test for other things. I think it all depends on how much time and money you have to throw at it. I personally found the intrallipid and drug plan not too invasive with Mr S which is one of the reasons I am going back to try again but then I already have a DD so I can rule out some of the tests that you might need. If it was me I would want to be tested for everything as it is almost like a checklist.
Have you also looked at acupuncture? The guy I use has helped some of his clients get pregnant after failed IVF so maybe you could look at alternative therapies too? I was having weekly acupuncture with my last pregnancy so I still don't know if it was that or Mr S's treatment plan that got me passed 12 weeks or a combination of both.

duggs1976 Thu 11-Oct-12 23:03:29

Hey I'm with ari wish I'd gone to dr g a year ago would've saved me about £12k and 12 mths of failed SO, IUI, IVF, FET sad if it wasn't for sue not sure where I'd be. Best of luck have a think as is v personal.

suemays Thu 11-Oct-12 23:17:35

I think I would research all of the main immune/ivf clinics. I know that dr g, zita west, ARGC and care are the main ones but they all test for different things and have varying treatment plans/prices. I didn't want to go down the humira route so that was one of the reasons I chose mr s.
As duggs said it all really is down to what suits you and at the end of the day so long as you get your baby who minds how we get there!

Coopde Fri 12-Oct-12 18:09:48

Ari and duggs and sue
Thank you for taking the time to reply. I'm feeling guilty as I tend to post messages via iPhone which means I am more hurried than I would like to be (and I get annoying typos by accident!).

Sue, I am particularly touched that with all the sadness around you that you have still taken the time to sympathise about my mother and give your views to me.

I am going to take the weekend to ponder and plan our next move. I'm very emotional - AF still hasn't turned up so I have PMT x 100. Poor DH is likely to get earache tonight from me waffling on in my sorry state. He always gets it in the neck when I'm emotional - I tend to lash out at those I'm closest to and contemplate the future and greener grass too deeply....

So, hopefully my mojo will be back next week! Meantime, thanks ladies for being so supportive and sharing your knowledge. I can see I'm going to need to get my Dr Beer book out again!

Have a lovely weekend.
Emma / coopde xx

Abney Sat 13-Oct-12 13:17:06

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Abney Sat 13-Oct-12 13:41:27

Hi all. Hope everyone is OK. Just a quick post from me to say I had another scan Thursday and despite me thinking once again it would be all over Dr S said 'and there's your baby'. I was shocked. It measured 9.1 and had a strong heartbeat. The twin that he saw had disappeared so I guess I was very lucky 2 have 2 chances. This is the furthest I have got apart from chromosone issue and of course my DS. My next scan is in 2 weeks time so fingers crossed. The only difference in the treatment is that I had fragmin up to 7 weeks and then I ran out. At the same time blood tests showed I did not need it. I have also had intralipids at 4 and 8 weeks and I have been on hydroxy for about 6 months.

I hope anyone going through a bad time of it is OK.

Ari I hope you are OK. I haven't had any additional tests but out of 12 pg's I have had 1 success so whatever issues I have shows that my success rate was less than 10%.

Welcome to all newbies. I hope this thread provides with all the answers and support you need.

To all TTC's. Fingers crossed that you will all get your BFP soon.

Sorry about the previous post DS running trains all over my keyboard.

Havingkittens Sat 13-Oct-12 18:46:39

Hello, quickie from me too as I'm just trying to get organised to go away on holiday in the morning. Can't wait! Off to Mallorca for 10 days.

Will be thinking of you on Tuesday Sue, I hope you are holding up OK.

Coopde, I'm sorry your IVF didn't work out and not surprised you are feeling emotional and fed up.

Abney, great to hear all is still on track for you. Mr S considers 9 weeks to be a pretty good milestone doesn't he?

I am 14 +3 now. I can hardly believe it. I guess that means I'm in the second trimester. I meant to update the list but I've just had the most horrendous headaches coming off the pred and haven't had the brain power for much, which is why I've not been posting much. I hope they don't continue much longer and spoil my holiday. I've been off the pred for a week now and they are still pretty painful. I hope there isn't any other reason for them!

Sending love to all. I will try to check in from my holiday when I have internet access. x