Twin-Twin Transfusion Syndrome

[MrsStevo]

Hi!

I wanted to share my experience of the most horrendous week of my life and find out if there is anyone else out there in the same / a similar boat?

My MCDA (identical) twins were diagnosed as having Twin-Twin Transfusion Syndrome (TTTS) at my 20 week scan last Tuesday (5th April). The doctor established this because one twin was smaller than the other, had virtually no amniotic fluid around it and was stuck to the wall of my uterus, not moving. It had a heartbeat but no bladder could be seen (as no fluid for it to drink / urinate). The other baby was swimming around in waaaaay too much amniotic fluid. The doctor thought I was at stage III of the condition (Stage V being babies have already died) so very serious.

So, I was referred to Birmingham Women's Hospital (I live in Lincoln) and had an appointment there on Wednesday afternoon. The (amazing) consultant - Mr. Bill Martin - scanned me and confirmed TTTS. He said he thought I was actually only stage II but basically said the only chance babies had was for me to have Fetoscopic Laser Ablation Surgery - keyhole surgery where they go into the sac that the bigger baby is in and laser / cut off some of the blood vessels in the placenta that the babies share so both babies have their own half. Odds are 40% chance of both babies surviving and 80% of one surviving. Plus added risk of early labour / waters breaking, infection etc.

Long story short, I was admitted to Birmingham Hosp on Wed PM and had the surgery at about 9am on Thursday. I was terrified - had to have spinal anaesthetic, be catheterised, wear a surgical gown and it was done in a big operating theatre with literally 15-20 people in it. However, my consultant was just amazing - so re-assuring and acted as though it was something he did everyday. He and his colleague were even chatting away about holidays whilst they lasered away.

After the surgery we (DH and I) had to wait for 6 hours before they would scan me again to see if the babies had survived the surgery. At the time, that was the longest 6 hours of my life. We had the scan at about 5pm and both babies were alive - the doctor said they looked healthy and it was the best outcome they could hope for. However, they also said that the next week is a crucial time and, if babies survive the week, then that is really good and indicates they both have a good chance of making it.

So. Here I am 4 days post-surgery with 43 hours until my next scan (they're doing it a day earlier in Lincoln so I can see my consultant there). I feel completely lost and totally in limbo. I don't know what to do with myself (aside from rest, feet up etc etc) but am just trying to stay sane. I'm trying my hardest to keep myself away from Dr. Google so I don't freak myself out by the statistics.

The biggest things I worried about right now:
Will both babies survive? I can't imagine my life without having twins in it now -these will be our first babies, having had a miscarriage last year.
IF they do survive, will they have any neurological damage as a result of surgery - cerebral palsy is a risk. How will we cope if they do?
I'm vegetarian - should I be on protein suppliements to promote healing / good blood quality etc?
Is there ANYTHING I can do to make the odds better?!

Oh. It is just a horrible time. My DH went back to work today (although he wants to be at home with me as much as I want him to be) so I'm alone with just my overactive mind (and a pesky cat) for company.

I wanted to write about this experience on here in case anyone has any pearls of wisdom or wants to share their experience of this horrible condition. Or, if anyone on here happens to be an expert in this condition, perhaps they can pump me full of optimism with a bunch of statistics that everything will be ok?

Thanks for taking the time to read / listen.

cake that is great news!! So pleased they're still in there and starting to improve. It has taken my babies 9 weeks to even out their amniotic fluid levels again but so long as they both have some then they can get their kidneys working which is all good.

It must be lovely to be able to feel fluttering twinnies! I have to say that I didn't even really believe I was pregnant until mine starting moving at about 22 weeks - I didn't have any feeling from them at all after the surgery.

I have my weekly scan tomorrow to check on fluid levels and blood flow. I have about 100 questions for the mw now that I know I'm having a CS!! I really hope I don't sound like I'm bragging about getting towards the end, I only talk about where I'm at as I hope it will give you all some hope that you can go through this awful, awful condition and still make it to the end.

I watched a programme called 'Hospital Sydney' today (it is amazing what trash I end up watching when I'm not at work!!) and there was a woman who had TTTS on that and her babies were delivered at 26 weeks. The smaller baby was only around 1lb - 1+ 1/2lb but both babies survived! I was, of course, blubbing whilst watching it - just so amazing to see what can be done for such poorly babies.

Fingers crossed for you all, keep us posted on how you're getting on x x

Morning all,

I know I shouldn't be stressing (or googling), but I noticed in my notes that donor twins Head Circumference has dropped some centiles, the other measurements not dropped so much. Dr google has worried me about brain injury. I wondered if anyone else has had similar?

I KNOW I'm overreacting, I will try to put it out of my mind until I talk to the consultant next! Bad me for googling again.

I hope you are all doing well. MrsStevo are you starting to get excited??

xx

Hi Cake i wasn't made aware of anything like that and my folder stays in the hospital but I'm having the 'big'20 week scan on Tuesday so they said they will do indepth check of all measurements then so i can let you know.

I really wouldn't google too much, i really believe it stresses one out more. Not that i want to remain ignorant or innocent about the dangers of this condition but i think too much googling can be dangerous sometimes with medical issues and worry you too much. There is a lady in Ireland sending me a leaflet/phamplet (which i think has been published in UK)with info about TTTS and stories about survivors. When it arrives i can give you the details of that if you like? Apparently published by the Multiple Births Association if that's any help.

MrsStevo hope the scan goes well for you! You must be so excited you are so close now :) Do you know the sex? Are you nervous about the CS? I suppose with identicals it's probably the safest way, i imagine most of us will have a CS. It is great to hear how well you are getting on as it really gives me hope that things can work out!

I am also familiar with those Sydney twins I read about them online (there's me saying don't google too much!haha)it was before i was affected with TTTS and the story really touched me too. Saw photos of the tiny little things.Such a great story that they survived too.

Chat soon x

Hello all, glad to hear you are doing ok Cake and Twinnies.

Mrs S - not bragging at all, its really good to hear from someone who is getting towards the end! How did your scan go?

I had an appointment with my consultant on Wednesday and all still looking good - she was really happy. Did a scan but just briefly to check heartbeats and fluid levels, have a more detailed growth scan next Wednesday. I tried to push her on when they would aim for delivery and she said it is very much wait and see at this point, will have steroids at 27/28 weeks and then take it from there. I have four weeks left at work which takes me to 29, I think I am going to be more than ready to finish by then, am feeling good at the moment but by the time it gets to Friday I am shattered.

God, I know what you mean re googling, in fact so many things. Read the TAMBA magazine the other day and it had a TTTS story in it saying that the TTTS re-occured at I think 29 weeks, cue panic from me. My consultant has assured me that it cannot re-occur, but there may be growth discordance if the placenta has not been split equally.

Have you all found out what you are having? We haven't, going for the surprise element, and I change my mind on a daily basis about what they are. Something else I read, probably with no grounding in reality, said that girls are more likley to survive trauma during pregnancy / very early delivery - will be interesting to see if they are girls!

Did anyone see that Emergency in the Womb on TTTS - its still on 4 on demand, I watched a little bit yesterday but it was too close to home so couldn't carry on with it.

Hope you all have good, restful weekends x

cake I will hunt you down and break your computer if you keep googling! Don't be worried - my donor twin's head circumference has gone down a bit as well but consultant has re-assured me that it isn't indicative of anything, just general variation.

silver - I read that article in the tamba magazine too! Thought it was very interesting but can understand why it creates panic!! I was shipped back to Birmingham Hosp at 25 weeks as my Lincoln consultant was concerned that TTTS was re-occurring as the fluid levels around babies were vastly different again. The specialist there actually told me that TTTS CAN re-occur in very rare circumstances as sometimes they might miss a vessel when they laser and sometimes the pressure can open up some of the lasered vessels again. In my case, neither of those things had occurred but he thought it was - as you said - that the placenta hadn't been split equally and actually the original donor twin was receiving the bigger blood supply. Hasn't made any odds to their development - the little baby remains the smallest by the same distance. Oh, and I read that you'll be having the steroid injections too - I had them at 27 weeks. Just to warn you.... it hurts!! The actual injection doesn't hurt so much (mine was in my bum cheek so fairly well padded ) but the viscosity of the fluid they inject makes it quite painful as it disperses - only for about 2 minutes - but make sure you breathe through the pain and focus on what a miraculous injection it is.

Oh and no, I didn't watch the 'emergency in the womb' thing for exactly the reason you said - far too close to home for me at the moment. I would be very interested to watch it, but only when I have both my babies firmly snuggled up in my arms.

I DO know what I'm having gender-wise but have to keep schtum on here as my sister and her friend are both on MN and i suspect my sister might stalk me a bit on here just to keep tabs on me and to keep an eye out if I say what gender they are! We hadn't wanted to know but, like a lot of others have said, found out at the point we had the surgery as we wanted to know what they were if we were going to lose them.

My scan today went fine thank you! Both babies are behaving themselves and their fluid levels have picked up - one is 5cm the other 6cm now. I asked when I would actually get my date for a CS and was told that they would prob look to book a date when I get to 34 weeks. I'm not actually that nervous and the CS itself but am anxious about the recovery from it etc. My biggest worry is that if the babies need to be in special care for a while, I won't be able to take myself up there and the midwives will no doubt be super busy. I'm also desperate to be able to breastfeed and worry about whether or not I'll be able to do that if they're in SCBU. But we will just have to see what these babies have in store for us!

Right, this has become an epic post - sorry! Hope you all have restful weekends and take it easy x x

Hello,

MrsStevo I'm so glad the scan went ok. There are so many worries aren't there, My family have been calling non stop for news, it seems such an essay to explain that so far everyone is alive, but that doesn't mean everything is ok and why they can't go out and buy toys and clothes yet!

I don't know how it will work out once your babies are born regarding SCBU or maybe even just a transitory ward, a women who used to counsel for TAMBA told me that twins are often tougher than singletons

gotta go, got a 19month after my keyboard

Thinking of you all

hello all,

Mrs. Stevo and Silverangel That's great your scans went well! I'm interested in the steroid injections that you mention....i haven't heard anything about them yet but i guess maybe i am so much earlier in my pregnancy that my consultant hasn't mentioned them yet, i have a long way to go before 27 weeks -sounds pretty painful and uncomfortable. The fluid that they inject, does it help balance the fluid again in the sacs?

Cake are you off for your next scan tomorrow then??If so good luck, will be thinking of you. I was so nervous going into mine last week. I'm back in tomorrow to see how the little girls are doing and for the 'big' 20week scan. I'm pretty nervous again even though they told me last week that things were looking more positive (as a month ago i was told it was highly unlikely my pregnancy would be affected by this). How are you doing? Not too stressed out i hope. I still can't sleep properly and it's really becoming a pain - still awake from 4/4.30 onwards. Managing to catch abit during the afternoon though as i'm not working since the surgery was meant to go away with work and missed the tour. I think even though i am not as upset and stressed as i was it is in my subconcious all the time.

One thing i noticed over the weekend is that when i went to visit some girlfriends for tea i found it much more difficult than i thought sitting with my other pregnant friend (she is having one baby and is 6weeks ahead of me) She kept chatting about how she is buying things left right and centre and planning the babies room etc.. full on nesting - i suddenly realised that i don't have the same excitement as i had or that now i'm maybe too afraid to get too excited as who knows what will happen with my babies. I feel i can't plan anything like that now. Anyway, I hoping if we get two or more weeks of positive words from my consultant i will feel like my pregnancy is back in the game again and i'll relax a little bit more!

Hello, was just thinking about you guys and wondering how you were getting on.

My consultant actually mentioned steroids before any of this happened, it seems at my hospital.

Mrs S - I feel the same as you re the section - not worried about the procedure at all but worried about recovery, time in special care etc. Think we just have to be pragmatic and take it as it comes, fingers crossed at 34 weeks they shouldn't need too long in special care. If mine have to be delivered pre 32 weeks (and keeping everything crossed they don't), they will deliver them at Kings instead of my local hospital which will be a giant pain in the arse logistically.

Twinnies - I know exactly what you mean re the excitement etc. I finally bit the bullet and ordered the buggy about ten days ago which has been delivered to mother in law. My husband cant understand why I don't want it in the house yet but it just seems too early. I have also today finally ordered a couple of bits - bath supports, some bouncing chairs and a breastfeeding pillow but its not as I imagined it to be, going out and shopping and getting excited over things. I wont relax until these babies are out!

Luckily, I've been ok so far on the sleeping front and generally I'm feeling pretty good - although I cant reach the floor or bend down without involuntarily groaning and I cant fit out my back door anymore without opening the second door!

Cake & Twinnies - good luck for the scans tomorrow - let us know how you get on. I'm back on Wednesday for the detailed growth scan.

x

Hi silverangel

I think we will do exactly as you have done-get everything much later on as nothing is certain and like you i won't have it in the house i think!

I was only thinking about what size your bump and Mrs,Stevos bumps must be! I think i am already big for five months so can only imagine what i will be like in a few week.s Hilarious you can't fit out the door, i'm hope i have all that to look forward too ;) I'm sure you just can't wait to have your babies safe in your arms! Hope your scan goes well on Wednesday! at least we're all being monitored all the time now!

Chat soon x

Hi!

twinnies - the steroid injections are to help the babies produce surfactant - something in their lungs which they would produce naturally at 34 weeks which helps them breathe once they arrive in the world. I was given them incase the babies needed to be delivered / arrived before 34 weeks gestation but it was
just a precaution.

Cake - I know what you mean about the 'essay' thing. I have grown very tired indeed about telling people what TTTS is, what it means risk-wise and just our general 'story'. I was in the hairdressers last week and when they asked how the pregnancy had been I didn't tell them any of it as I just couldn't be bothered. Family have been quite good on the whole and done their own research - my mum and dad watched the 'emergency in the womb' programme which I think gave them a good understanding (and freaked them out too).

Sleep-wise, my nights are very disturbed now! I can't get comfy for long and have to keep switching sides and re-arranging pillows. But I have the odd nap during the day if I've had a properly awful night. I am huge though - waist is 44 + 1/2 inches now!! But I love it - despite the stretch mark-o-rama I now have going on.

I felt exactly the same as both of you about getting excited and buying things for the babies. Since the surgery I've never really accepted that I might actually HAVE these babies and get to bring them home so haven't been able to feel very excited about them and didn't want to buy stuff in case it somehow jinxed them. For me, reaching 28 weeks was a milestone as my consultant said that they would almost certainly survive if they were born then so I have started relaxing a bit since then. I have had to buy loads of things in the last couple of weeks as I want to be as prepared as possible but even now I have a nagging voice in my head warning me not to go crazy in case something goes wrong. I don't think I'll relax until my babies are firmly in my arms either.

Anyway, I'll have everything crossed for you guys tomorrow and Wednesday - let us know how you get on. I'm 31 weeks tomorrow, not back at the hosp until Friday for another growth scan.

x x x

Hi,

I had another scan today, so thats 7 days after the laser op. The babies themselves are doing very well. Dopplers back to normal, amniotic fluid levels going in the right direction pretty speedily, a really good result so far.

The only fly in the ointment is that the outer membrane has come away from the uterine wall, (chorionic membrane separation). So my risk of miscarriage has increased some more as the membranes are a bit more vulnerable to early rupture. Well. Add it to the end of the list of all the other risks I say, I guess it would have been tooooooo much to ask to have the babies bounce back from stage 3 without some blip to worry about.

How are the rest of you doing?

hi there,

Mrs Stevo thanks for the low down on the steroid injections :) hadn't heard of them before! So great you are 31 weeks now - what i would give to be there or even 28! I still have such a long way to go. Pretty impressive waist line! I've abit of catching up to do yet - my bump is coming along though especially in the last month - think in another week i'll be out of my normal jeans and into maternity ones!

Cake - so sorry to hear there are still some further risks for you and your little babies :( I had read about that only the other day. do you need to rest up much more now? Doesn't it also cause preterm labour? I will be sending good wishes your way and praying for you that it won't cause you any further heartache. On a more positive note, you must focus on the good results - great babies are recovering so quickly and that all fluid levels etc.. are good!many positive things there too.

I had my scan and meeting with the consultant this morning. Babies are doing very well all considered. Like Cake dopplers normal, fluid levels in both sacs are equal, bladders are functioning properly again and hearts and brains also doing very well no fluid residue anywhere. They did a full growth scan and the twins are actually the same size - for now anyway about 15cm. All in all we are pleased,our consultant seemed pleased too but also quick to add it that it is still early days and we have a long way to go- i'm only 20weeks in a few days.

Anyway we have to take it week by week so in my eyes another Tuesday ticked off, now we'll aim for the next one!

Mrs Stevo hope scan goes well on Friday

xx

Cake, sorry to hear that but good news that hte babies are doing well. What happens now, do they just keep a close eye on you?

Twinnies - good news re your scan.

I am in tomorrow for a scan, thought it was today, arranged time off work and then checked and realised wrng day. Brain is definitley turning to mush!

x

cake - that is great news that both babies are ok! So pleased for you. Sorry to hear about the membrane separation - what does that mean in terms of keeping an eye on you? The woman on the Hospital Sydney programme I saw last week had that as well as TTTS and her babies were fine. How many weeks are you now? I love the sound of your positive attitude though. Like you say, it is just another risk to add to the pile and your amazing babies have already overcome some pretty bad odds to survive the surgery. They are clearly fighters!

twinnies - also fantastic news from you! Brilliant that they're now the same size again. Very clever babies indeed :)

Like you both say, take it week by week, that is all you can do. You'll get there I'm sure! Although every week does seem like a bit of a lifetime I know. I felt the same way about getting to 28 weeks - never thought it would happen - but now I'm getting greedy and really want to get to 35 weeks!!

Silver good luck for tomorrow !! I sympathise with the baby brain, I'm incapable of complex thinking at the moment :( Let us know how you get on tomorrow

Hi,

About the membrane separation, my consultant says it another thing to keep close eye on, and I still cannot lift my children or do anything strenuous. I have to be careful. It does increase the risks of PROM and pre-labour but I can't seem to get away from that one!

I am just over 20weeks. Before all the TTTS stuff I felt time was flying by and I wouldn't have much time to do all the organising/filling the freezer I needed to do. Now it seems to be taking forever. I'm desperate to get to 28 weeks and mrsStevo is my true aspiration, I'd love to be still going like you! i'm very excited for you!

Well i guess you need to take it very easy then - probably hard with a family already. This is my first pregnancy so only have myself and twins to try to look after.

I know how you feel Cake -I feel exactly the same - but i guess maybe once a few weeks pass with this new type of pregnancy for us it might (?) seem more 'normal' in a wierd way and the time will start to pass quicker - i hope so anyway! I am wondering the same thing - will we ever get to 28 weeks? If the other ladies can do it, it can also happen for us! - at least you are a week ahead of me - you lucky thing! :) x

Only skimmed the thread, (my own twins (nonID) are crying) but good luck to you ladies. I can't imagine the trauma that TTTS gives but you sound like strong wonderful ladies, and I wish you all the best in the coming weeks until (fingers crossed) a happy twin birth

Hi all,

Thanks Ginger.

Well I had my scan yesterday (first at local hospital) and it was a nightmare! Babies are well, good growth and fluid levels, bladder and kidneys normal in both but the sonographer clearly didn't know anything about TTTS - she asked me when I walked in if they had seperate placentas, I said no MCDA, she said 'Oh, so non-idetical then?'. She couldn't get a measurement for the fluid around each baby, said it was too difficult, and then kept getting an intermittent absent EDF for twin 2. She sent me outside while she wrote up my notes and said she would refer me back to Kings (which by this point I was totally happy with!). She then came back and told me she was sending me up to the labout ward - cue panic on my behalf thinking something was desperatley wrong and that they were going to want to get them out already!!

Waited up there for an age as the consultant was doing an EMCS, he came to see me and introduced himself, he was from Quenn Charlotte's and happened to be covering at my hospital and he actually knew what he was talking about. First thing he said was that they were doing really well and to relax, and that the absent EDF was most likley down to the sonogropher, especially as it was intermittently missing. The fact they are growing well doesnt accord with absent EDF. End result - referred back to Kings and going for a scan next week but happy with progress so far. Phew.

Hope all is well with everyone and you have good weekends:)

Well silver, sounds like you and I have had similarly crap experiences in the last 24 hours!!

I had a growth scan this morning. Usual 30 minute wait between my appointment time and my actual scan time. Nice sonographer who I've seen before did the measurements - both babies still measuring between 25th and 50th centile, but bigger twin hasn't grown all that much in the last 2 weeks. Then she measured the ventricles in the babies' brains and found that the smaller twin's left ventrical is dilated more than it should be - maximum depth should be 10mm and it was 11.4mm. Second sonographer then came in to double check it (10 minutes later, so I was alone for 10 minutes having just been told there was an abnormality with one of my baby's brains!! FFS!!) and confirmed the same. So THEN I was sent packing back out to the waiting room to await meeting with the midwife. An HOUR later (about half of which I spent in the toilets sobbing my heart out) I get called in by yet ANOTHER midwife who I've never met, who has no idea what I've been through etc etc and the first thing she said was "Oh, I see you're having twins". ARRRRRRGGGGGGHHHHHHH!!!!!!!!!!!!!!!!!!!! YES I AM HAVING FUCKING TWINS AND THEY ARE VERY COMPLICATED TWINS AND I'VE HAD SURGERY AND NOW ONE OF THEM POSSIBLY HAS A BRAIN ABNORMALITY....... READ MY FUCKING NOTES!!!!!!!!!!!! (I didn't say any of that of course, just a polite "yes"). So she does all the normal stuff - BP, asking me about movements etc - and then goes to get the doctor to 'sign me off' for another week. Doctor comes in and basically said that he couldn't tell me what the increased ventricle thing could mean at this stage but there's nothing they can do about it anyway. He said they would measure it again on my next scan in 2 weeks and if it remains enlarged, then I would be referred to a paediatrician to discuss what this might mean when the babies arrive. I then had to point out that I am actually scanned weekly and would it be possible for them to measure it again next week. "oh yes, so you are. In that case, yes, we'll measure it again then". Idiot. Would have loved to have seen my own consultant who actually appears to give a toss but of course he wasn't around (despite it being his bloody clinic!).

So. I now have to wait for a week to find out whether or not there is actually a significant problem. In the meantime of course I'm verging on hysterical, jumping to huge conclusions about the baby having brain damage / cerebral palsy / hydrocephalis etc and have no idea how I'm supposed to get through the next week and stay sane. I am resolute that I will not google this latest development though for fear of self-diagnosing any / all of the above conditions.

All of this not helped by DH being at work so I'm all alone. Have spoken / sobbed to him on the phone but I could really use him being here for a hug not 50 miles away in some office.

Sorry to wail (and for the blue language!). I'm just hugely upset that we've encountered yet another problem after everything appeared to be going so well :( And also hugely pissed off at Lincoln County Hospital for their shoddy, shoddy information sharing. If I have to tell one more midwife our "story" then I will seriously lose it with someone.

Oh Mrs S, that is indeed shit. I know its so easy to say but you are going to have to stay thinking positive ? you?ve come so far already and STAY AWAY FROM GOOGLE. Sending you lots of virtual hugs (and I don?t usually go in for that sort of stuff!). It seems so unfair after everything that they have been through already.

I was so pissed off when I got home yesterday I have scrawled in black marker ID TWINS LASER ABLATION right across the front of my notes, perhaps someone might actually pay attention to them now. Yesterday I felt as if I was the medical professional and not the sonographer.

oh ladies, so sorry that you have had frustrating and very distressful days this week.

Mr.Stevo i'm feeling so emotional just reading your post so can only imagine how you must be feeling :( You have come so far and just need to try to stay positive admist all this anxiety. I'm sure it's not easy, i'm sure i would feel like crumbling too.

Will be thinking of you and praying for your babies (it's funny i am not religious at all, but since this has all happened i like to try to send little prayers in the hope it helps) Mr. Twinnies also thinking of you all.

Stay strong
much love

Twinnies xxx

Hello Mrsstevo and silverangel

I am so so cross on both of your behalfs.

My pointless scare to do with head not growing was when someone other than my consultant did the scanning. I scared myself to hysteria googling it and the following week when I went back to my consultant and brought it up straight away, he looked me very carefully in the eye and told me it didn't worry him at all.

Both of you have been given the runaround by people who where not entirely competent for your situation and you will hurt yourself if you google, so be strong, be strong.

Remember, our babies are being super-monitored, and it will be normal for us to panic whenever their development is not perfectly smooth and predictable, but I doubt other babies have smooth development in utero, it just isn't watched.

What I'm saying is, you don't know if the outcome is a problem or not yet, even if the consultant does describe risks, remember they have to cover all possibilities. Your babies have already beaten the odds being where they are and just because something might be a possibility, doesn't mean it will be.

Worry is our middle name right, NO GOOGLING

God I hope I've made sense. SilverAngel if you have any more annoying, useless sonographers, threaten them with the internal probe thing. So cross.

I am thinking of you and everything is crossed for your next scans (by competent people hopefully)

Thanks Cake its my new mantra 'stay away from google!'. How are you getting on?

Mrs S - been thinking of you and Mr S over the weekend and hope it didn't drag too much for you.

I know have the 'normal' pregnancy symptom of a cripplingly bad back, think its sciatica or something like that - couldn't go to work today and my finishing date of 15 July cant come round soon enough!

Thanks so much for your messages. cake - you're so right about our babies being super monitored. I think I had just become a bit complacent that everything was going to be ok (which it still might be of course, I just won't take it for granted!!) so the news hit me pretty hard.

My DH called the lead midwife at the hospital on friday PM and spoke to her about how upset I was about the treatment I received and about the concern about the ventricle thing. She was lovely apparently and agreed that it is far from ideal that I've seen a different midwife and doctor just about every week. She had a look through my notes herself and has assured us that she will put them directly under my consultant's nose today (when he's back from his hollies!). Whatever happens I have another scan on Friday and I will see my consultant then. DH is taking the morning off work to be with me as I can't face going on my own again. Something about being there makes me a bit pathetic and I can't stand up for myself - I need him there to be my advocate.

We've also decided that unless Lincoln step up their game this week, we're going to transfer to Nottingham hosp which has a much better reputation, better facilities and a neo-natal ward.

Anyway! Hope you're all ok - sorry to hear about your back silver, are you feeling any better? I'm suffering a bit in that department as well - the bottom right of my back is agony when I lift anything remotely heavy. Took me an hour to traipse (slowly) around sainsburys this afternoon! Your comment about scrawling in black marker across your notes made me laugh!!! I am VERY tempted to do the same.

Hello,

mrsStevo I'm glad your dh rang for you, it is so hard to have worries, especially when we've been through so much already, its as if the stakes have been raised. I had a scan today and inside I was a horrible bag of nerves that there would be some problem, everything was fine luckily but I surprised myself how non-calm I was.

What is sciatica like? I am having SPD pains, had them with the last 2 too.

I've just come across a programme called Baby Hospital. I'm not sure if I should be watching this...