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Just been diagnosed with TTTS

(111 Posts)
SmellySphinx Thu 11-Oct-18 01:20:23

Hello x

I have twin boys, I'm 22+3 weeks and earlier today I was diagnosed with TTTS I don't know what stage but the notes I have don't make for good reading. One twin is surrounded by too much fluid and the other twin is 'adhered to the uterine wall' and bladder wasn't seen. I have had no signs or symptoms other then one side of my belly appeared a little larger and I mean a little bit, but it didn't appear to be all the time. Also pretty much as soon as I got 21 weeks, I was feeling quite a lot of pressure in my lower abdomen and under my rib. All pretty normal for pregnancy and especially twins I would have thought.

I already knew about ttts as of course as soon as I found out I was having mo/di twins I did all the reading (Googling) I could possibly do...well, you do don't you!

Everything was going excellently until I had my 22 week scan earlier today and the sonographer went quiet after she saw the heartbeats and didn't say much except for the fact there was more fluid around one baby (the donor) and that was pretty much it. I saw the consultant, a different consultant, each time I've seen a consultant it's never the same one. This is the 4th time and is actually the consultant I should have been seeing all along really...she explained it all and we had to go home and sit and wait for a call back as they were trying to sort an appointment for me at Birmingham Queens.

I was so distracted I booked the wrong date for the hotel which tried to charge a £65 cancellation fee hmm which my husband luckily got them to cancel for nothing and we ended up in a different hotel.

So, one bus-train-taxi-takeaway later I'm sat in this 'lovely' hotel. Thankfully the people next door only had very noisy fun once so I don't have to listen to that all night long. My husband and toddler are asleep and well, I can't although I know I need to soon.

Appointment is at 10am tomorrow and I'm trying not to worry too much, I've just been googling medical papers and ttts stories which are a mixed bag of course.

I don't know why I've written it all out, I'm just so apprehensive...and tired :|

Goostacean Thu 11-Oct-18 01:29:22

I don’t know anything about this, so can’t give any pearls of wisdom, but I just wanted to wish you luck and make sure you got a nice reply smile I’m sure you’re in the best place possible (well, you will be in the morning) to get the information and support you need. Very best of luck.

SmellySphinx Thu 11-Oct-18 01:35:07

Thank you X I appreciate the reply...I did type this out already but it hasn't appeared.

Goostacean Fri 12-Oct-18 02:15:30

How did things go today...? Hope you had as good an experience as can be expected, and got some answers?

SmellySphinx Fri 12-Oct-18 02:55:50

Hello! Thank you for asking I honestly didn't expect any other replies xx I have had the operation now and I'm in hospital. The babies did have twin to twin transfusion it was a very grim outlook at stage 3, and we're definitely still not out of the woods by any stretch of the imagination but they are alive. It's a terrible thing to go through I won't sugar coat it but it was either have the operation or we would have lost both of them. The staff have been absolutely 5* second to none, hands down the best hospital I've ever been in so that in itself is a blessing, I can't praise it enough xx

Ifeelinclined Fri 12-Oct-18 03:26:30

I'm so glad the operation went well. I'll be thinking about you and your sweet boys!

SmellySphinx Fri 12-Oct-18 04:39:12

Thank you also smile xx
I had fluid drained and added and they're still smaller than they should be, I just hope they will hold up until the time is right to come out!! I have another scan tomorrow morning but I can feel them wriggling a lot more now which is comforting xx

DifficultSituation999 Sun 14-Oct-18 12:57:18

Hi, So sorry to hear you are going through this. My twins had a degree of TTTS and the was pregnancy was so stressful. However I now have two very lovely and lovely twin toddlers! I’ve also met lots of other twin parents, some of whom had to undergo laser surgery for TTTS. This technique is improving all the time and I know lots of people who have had good outcomes. I think there’s a Facebook group for TTTS parents and Tamba has a helpline. Do avoid any advice from American sites as they have a very different approach to the treatment of TTTS which is not supported here.

SmellySphinx Sun 14-Oct-18 13:19:47

Hello, thank you for your reply xx yes I have done nothing but read about it since before being diagnosed to be honest but more so now. I have noticed that the US seem to have a very different approach towards it and I've not taken it on board really. I've stuck to mainly reading the UK medical studies that have been published which are few and far between but helpful none the less.

It's a day by day thing I know nothing is guaranteed but all I can say and hope for is that things are good today, they're both wriggling and that's a plus.

I've put off joining any ttts groups for now at least until I know more about our own situation. I'm already anxious enough without reading other people's stories...if you know what I mean confused xx We have a follow up scan on Tuesday and weekly there after as well as an MRI in 5 weeks. Fingers, toes, legs, eyes, arms, everything crossible-crossed for a good outcome! smile

SmellySphinx Sun 14-Oct-18 13:27:36

Just to add, we obviously had the scan after the surgery and the following morning and all seemed well. The smaller recipient twin has a marginal cord insert and we also had both of our bloods taken for an in depth test to rule out any genetic abnormalities. My notes on the surgery says it was "without complications" and both babies have no obvious physical deformities despite them being small. I'm not worried about them being small if I'm honest, well at least it doesn't concern me at the moment as the weights of twins varies so much! It's a wait and see approach as with everything else.

I'm resting as much as possible and eating healthy stuff regularly, drinking lots of water, juice and milk. I'll keep updating the thread as we go incase anyone else is reading, it might be helpful! X

Goostacean Wed 17-Oct-18 18:15:32

Hi again, so pleased you hear the standard of care was top-notch and things have gone well. Sounds like a really difficult time. How was the scan yesterday? Got everything crossed for you!

SmellySphinx Wed 17-Oct-18 19:06:12

Hello xx

Oh it really was!

Things seem to be going well, after lots and lots of wriggling
and patience... bladders and hearts checked and normal, smaller twin 2 brain function normal. Twin 1 was being a really awkward baby with his head stuck in such a way it was difficult for the consultant to scan his brain but she did pick up a satisfactory doppler result after i went for a walk thankfully, although he didn't feel like behaving and didn't move much grin

The liquer volumes are still unequal but hopefully they should equalize I really, really hope they do. They seem to keep mixing up which is twin 1 and 2 although obviously twin 2, as has always been the case is smaller, they're putting in my notes twin 1's symptoms sometimes! confused

I'm worried about a reoccurance of ttts, I think there is a 12% chance according to records which don't really mean much.

I will of course have the operation again if I have to but it will stress me (and all of us) out no end with the worry and cost and upheaval again but needs must!

I keep thinking how did I miss it happening?! but honestly although it happened relatively quickly it was also the same symptoms of any pregnancy. We're just lucky I had a scan anyway the day we did otherwise the outcome would be very different. The consultant literally said if we wait until tomorrow the smaller twin will die sad

Anyway! It's just passing thoughts I'm not focusing on too much right now, just with the chance of it happening again... I've bought a measuring tape lol it's not a foolproof way of monitoring it but along with the pressure pains, lopsided belly and reduced movements (that I didn't see as anything too bad due to space constraints and they were still moving) I will hopefully see the signs. Plus weekly scans from now on.

Sorry, rambling!
So, fingers still crossed everything stays good Xxx

loopylou1984 Sun 21-Oct-18 18:12:56

So glad everything has gone as well as it can so far.

Just to give you a positive story my girls were diagnosed at 22+3, had laser and fluid reduction at 22+4 and they held on until planned c-sec at 34 weeks.

Don't beat yourself up about not knowing, I had no idea.... and to be honest neither did my maternity triage. I went in the day before with pain under my ribs and they sent me away with medication for heart burn. Didn't scan me or even listen to babies heart beats. Thank goodness we had a planned scan the next day.

SmellySphinx Sun 21-Oct-18 18:38:20

Hi xx Oh how stressful! I'm glad you had a good outcome xx

The only reason they caught it with us is because of the planned scan, it's so scary!

I had a bit of a wobble on Wednesday night/Thursday afternoon actually because they weren't moving as vigorously as before, all triage did was listen to the heartbeats, test my pee and feel my abdomen. They said they don't monitor or scan anymore until 26 weeks they would only perform a scan if they couldn't find the heartbeats or it proves difficult to locate one of them. I have to say this was quite unsettling really as the only way they could know that anything was really going wrong is through a scan in my case. You can't exactly go in demanding anything, it wasn't busy though when I went in and to be fair I do have a scan on Tuesday. I think they need to do more scans between 16-22 weeks with twins as twice a month isn't enough to catch this happening unless you're lucky. Considering the symptoms aren't exactly as visible as they make out. It's probably asking too much of the busy NHS though, I don't know...

They did of course start to wriggle furiously AFTER we got home lol

What did your babies weigh if you don't mind me asking? Xx

loopylou1984 Sun 21-Oct-18 19:46:29

I think the smaller hospitals are just not very well trained in complications like ttts or even in twin pregnancies in general. There needs to be more awareness.

If you think there is a chance anything is wrong then don't be afraid to go in and demand a scan. Give them the figures and percentages, talk about how quickly things can change with ttts - basically make so much fuss that they have to scan you. Maybe in single pregnancies they can have a blanket 'we don't scan before 26 weeks' rule - but not in ID twins!

They were 3lb5 and 3lb9. My donor was actually the heavier baby in the end, despite being 25% smaller at the point of laser.

SmellySphinx Sun 21-Oct-18 20:48:14

Yes true, I did tell them when I rang that I was high risk and that the consultant told me to ring triage if I experienced reduced movements. I did see a consultant before I left but he didn't seem concerned, he said we're not ignoring it but there is nothing concerning.

I'm getting scans from the consultant who has experience with twins and TTTS on Tuesday as I did last Tuesday, I think I will actually ask her to write in my notes to scan if I have to go again, it would put my mind at rest. I'm certainly not a hospital botherer lol but in my case I think things need to be taken a little more seriously. I have had 3 children, all singles and I only ever showed up to be monitored when I was instructed to for high blood pressure after it was taken by my midwife. On that note, I don't know if your experience was the same but I don't see the midwife any more and haven't since 12 weeks she said there really is no point as you (I) will have regular appointments. She said I can always see her if need be though.

Throughout (excluding my time at Birmingham) I've been weighed twice and had my wee tested 3 times and I had to ask for my flu shot at 20 weeks rather than it being offered to me confused. There has been less consistency in this pregnancy than my others to be honest.

Donor baby is the larger of the two in my case I don't know if that will change however the size difference between their bellies on the scans is quite obvious.

Can I also ask did your babies spend time in the NICU and were you able to use your milk or feed them? Don't have to answer if you don't feel comfortable of course xx

loopylou1984 Sun 21-Oct-18 21:53:33

3 weeks in NICU, only really to grow and to let them develop their suck reflex. They were tube fed for about 2 weeks and then we started on bottles (but they were very supportive of those wanting to breast feed too, I was just desperate to get home and bottles tend to be quicker).
I expressed from day one (in fact I expressed colostrum before they were born and froze it) and they tube fed them with my milk exclusively when there was enough, and topped up with preemie formula when there wasn't.

SmellySphinx Sun 21-Oct-18 22:54:08

That's really very informative thank you so much xx

SmellySphinx Tue 23-Oct-18 20:30:07

Update after today's scan...

Got a call from a midwife at Birmingham Queens, all of the genetic tests we had are clear and there are no problems there. We went to hospital for the growth scan and both babies have caught up with each other and are growing.

However, twin 2, previously the smaller recipient twin is showing signs of anaemia, the blood flow is faster. Early stages of TAPS I'm guessing. So it's scans twice a week from now on hoping that the condition doesn't progress further or faster, if so then it's back to Birmingham for Me, logistical and financial pain in the buttocks!!

Friday morning is my next scan!

Goostacean Tue 23-Oct-18 23:50:32

Glad to hear at least a partially positive update. Best of luck with the next scan, hopefully the anaemia won’t progress. Please do keep updating! Wishing you and the bump(s!) well smile

notapizzaeater Wed 24-Oct-18 00:04:17

Good luck with the next scan x

loopylou1984 Wed 24-Oct-18 08:02:54

Great news that the size discrepancy has evened out. How are the fluid levels?

It's unusual (not impossible) for the recipient to be bigger and be the anaemic one - are you sure that's the right way round? Could well be, but not the usual route TTTS takes.

Good luck for Friday. I'm glad they're scanning you regularly.

Any pain, tightness, rapid growth of bump, reduced or hugely increased movements then get yourself to the hospital and don't leave until you're scanned.

You're over 24 weeks now aren't you?

SmellySphinx Wed 24-Oct-18 16:30:36

Cheers everyone Xxx wink

I hope they don't swap places as far as TTTS is concerned confused

The previously smaller twin 2 was the recipient when I had ttts this is the early stages of suspected TAPS as yes the fluid levels have more or less levelled out. Twin 1, 50mm. Twin 2, 72mm (thankfully) I'm 24 weeks 3 days today X

They're a few grams out from each other Twin 1 (maternal right) breech is now 529g and twin 2 (maternal left) cephalic 533g. Twin two has been packing on the grams lol
The consultant has written on my notes "Taps, ? Recurring TTTS" but as TAPS is a form of TTTS I'm assuming that's what it means. Either way I'll find out at the next scan. TAPS is the lesser of two evils I suppose as it is a slower progression, or even better, it doesn't progress at all. I'm just glad I'm being closely monitored now.

I'll keep posting updates xxx

moolady1977 Wed 24-Oct-18 16:39:02

I will be following your updates and wishing you all the best, I was a ttts baby over 40years ago

SmellySphinx Wed 24-Oct-18 17:02:11

Thank you xx

I had no idea it was even possible for me to become pregnant with twins lol

The layperson (or me) would just assume it's IVF or family related. Well wasn't I wrong, wrong and wrong again!! Not to mention all the complications that can happen. I only knew basics such as the likelihood of a premature birth. There is just so little information on twins in general, it's surprising to say the least.

The only connection is that my mother in law had twins however they have a different father to my husband.

loopylou1984 Wed 24-Oct-18 18:03:16

Identical twins are just a fluke. Not genetic at all and not the kind of twins you usually get from IVF...although my ID girls were in fact IVF!

Non identical twins can be genetic but only down the maternal line. So if your mum, maternal grandma, maternal great grandmother etc was a twin then you may also have twins. If you dad for example was a twin then that doesn't affect your chances of having them. The genetic factor is the predisposition to release 2 or more eggs at a time!

And I've just realised how much I've learnt since having twins 😂

SmellySphinx Wed 24-Oct-18 18:51:59

Haha I certainly know a lot more than I did, even some of the midwives and sonographers know very little.

I started seeing twins and twin things everywhere! Ok, they're not there any more than before but like with anything you notice it more if it's happening to you. I suddenly noticed twins in the street, at the supermarket, on TV!

Just randomly popping up as soon as I found out.

DifficultSituation999 Wed 24-Oct-18 18:59:01

Hi Smelly, glad things are going relatively well.

With regards to breastfeeding, yes you most definitely can! Join a Facebook group called “breastfeeding twins and triplets UK”, loads of amazing advice, also lots of preemie/TTTS mums in there.

Mine were 29 weekers and were in NICU for 3 months (my smaller one was very poorly). I expressed and tube fed at first and then breastfed fully once we came home. Once established breastfeeding was a lot easier than bottle feeding (for me personally).

Hope your twins keep well & that you won’t need another surgery x

SmellySphinx Sun 28-Oct-18 18:59:37

Hiya xx Awww I can't imagine how stressful that was for you and your family, thank you for sharing. Its really good to know, I do really want to breastfeed xx

I will join some more group's on Facebook soon definitely as there just isn't much information on Google about TAPS at all, well not as much as I would like anyway.

Just to update, sorry kept remembering then forgetting! The scan on Friday showed things are getting worse however it isn't danger zone as yet, I suppose we're just delaying the inevitable. Another scan tomorrow at 11 xx

SmellySphinx Sun 28-Oct-18 19:05:06

Just to add they are so damn wriggly!!!! That's an absolute plus obviously but my oh my it's starting to make me feel sick today. I don't usually and haven't suffered any (so called) morning sickness with any of my pregnancies, just slight nausea which is usually always down to the iron. If I happen to eat something with extra iron it messes with my stomach, ugh! I'm already taking Spatone and have been for months which is a God send as it doesn't make me feel like crap! These two wrigglers don't help though grin

loopylou1984 Sun 28-Oct-18 19:31:25

Sorry to hear it's getting worse, best of luck for tomorrow's scan. Xx

SmellySphinx Sun 28-Oct-18 19:42:52

Thanks Sammy, I'll update tomorrow xx

SmellySphinx Mon 29-Oct-18 14:22:13

Some slightly good news! Things do seem to have stabilised somewhat as the readings are similar to the last scan, fluids are even better than last time, cord and brain blood flows are looking normal. Consultant talked about steroids with Birmingham consultant but said its best to wait for now and we're working towards the markers of 28, 30 then 32 weeks. Seeing as things are looking a little better my next scan isn't until Friday now.

Come on Babies, you can do this!!!! grin

loopylou1984 Mon 29-Oct-18 19:55:04

That's great news 

ileclerc Wed 31-Oct-18 12:16:05


Glad you had some positive news today.

Just to add another positive story, my TTTS babies are 8 now, had laser at 19 weeks and they were delivered at 31+3 via EMCS. Were booked in for 34 weeks but didnt quite make it.

They were 3lb1 and 3lb 3 (donor was heaviest at birth here too), we were in hospital until 37 weeks. They had no issues apart from growing and putting on some weight.

I remember it being a complete roller coaster of emotions before they were born - good scans / bad scans / good news / bad news. Hang in there.

Thinking of you

SmellySphinx Wed 31-Oct-18 12:34:54

Hello xx thanks for sharing, I must say it is a relief each time I do happen to hear of a good news story from someone especially if the circumstances are similar to mine xx

Did you actually go into labour before the emc or was it a matter of better out than in? X

Ifeelinclined Fri 02-Nov-18 03:03:04

I'm so glad that you got some good news! I've been thinking about you and you sweet twins. Best of luck!

loopylou1984 Fri 02-Nov-18 09:00:27

Good luck for your scan today

SmellySphinx Fri 02-Nov-18 15:10:02


Readings are on the rise again, slowly but surely confused feeling a little more scared now as im I'm 26 weeks on Sunday and closer to the 28 weeks mark where my consultant said they tend to look at delivery as opposed to treating in utero should it reach the it drops stage.

I know nothing is certain obviously but it's on my mind.

Deep down I knew things wouldn't stabilise fully anyway but you can always hope!

Results of the scans faxed to Birmingham, waiting for a call back from the consultant to see what the next step is. It'll probably be a wait and see approach as although the readings have worsened the cord flow and fluid levels are fine. No fluid around babies hearts or organs. Next scan is on Monday, thank you for the support xx

I've tried to join a group on Facebook, I emailed them as it suggested on their group that they have a pregnancy group which they add you to. I got a message from admin asking for more information so I told them the situation and haven't heard anything back since. Sometimes feel like I'm on the outside looking in on all these twin group's because most talk about twins who are already born, some very sad and not so comforting stories sad.

Tamba is Ok I suppose but again the website to me personally isn't telling me anything I don't already know. Not much about taps that I can see. I don't fancy ringing up the helpline as I don't really 'do' phone calls, I prefer to browse and read.

Anyway, positives out weigh the negatives right now so shouldn't focus on those.

Anyone have a crystal ball handy?! grin

SmellySphinx Fri 02-Nov-18 15:13:05

Stupid stupid STUPID autocorrect.

Should say...
*Readings are on the rise again, slowly but surely. Feeling a little more scared now as I'm 26 weeks on Sunday and closer to the 28 weeks mark where my consultant said they tend to look at delivery as opposed to treating in utero should it reach the hydrops stage*

SmellySphinx Fri 02-Nov-18 15:17:55

Oh Also, not important really but it was a little weird to me... my bump suddenly reduced a little two days ago, nothing changed didn't feel off, nothing leaking they were wriggling as normal. Found out today that twin one had flipped and they're now both cephalic and spooning, still separated by the membrane of course but also very cute!

loopylou1984 Fri 02-Nov-18 20:17:17

If this isn't the one you've tried to join then I recommend. There are so many knowledgeable ladies on there and I'm sure several people would be able to offer support for your specific situation.

There are some sad and scary stories on there but you are asked to start your own post asking advice so there is no need to read the others if you don't want to.

SmellySphinx Fri 02-Nov-18 20:38:33

Thanks again Sammy xx Yes I think that is the one I tried to join. The admins are either not super active or because I don't have much on my FB (I left, rejoined, left etc) and don't have pictures of me or children openly, it's all private. No human pics on my profile either perhaps they're being extra cautious. I did write enough in the message to show I'm not a weirdo or messing around. We'll see I suppose! All the others seem to be American x

SmellySphinx Fri 02-Nov-18 20:49:21

Just checked again, my Facebook was playing up a minute ago. The one I tried to join was TTTS foundation TTTS survivors group but you had to message them to be added to the pregnancy group

SmellySphinx Fri 02-Nov-18 20:54:01

Ok, I've requested to join that group thanks. I was confusing the two haha

loopylou1984 Sat 03-Nov-18 10:54:21

They're usually quite active so hopefully will add you quickly

SmellySphinx Mon 05-Nov-18 18:40:58

I'm part of the group now xx I wrote a huge introduction as asked but it hasn't been posted yet. Perhaps it was too long lol not sure confused Not many mentions of TAPS well, not very many. A few people had the taps later on in pregnancy. It is comforting to finally be part of a group of other people who understand however much I'm sure we all wish it didn't even exist.
Anyway, today's scan including growth scan went quite well. I did have to wait an hour tonget scanned. A male sonographer grabbed my notes thinking I was just in for regular scanning and not realising my history, he looked terrified and soon changed his mind about scanning me. He was so apologetic I did feel so sorry for him haha.

Both babies measurements almost identical. Fluids, cord flow good brains and hearts looking healthy, no signs of fluid around the organs. It's just the damn MCA blood flow readings that are off kilter.

The consultant said things are stable, by which I've now come to understand she means aren't 'critical' rather than unchanged. Perhaps 'stable' is the wrong word to use!? Babies have put on around 40oz so thankfully they are growing. She also mentioned the femur measurement has dipped slightly but that's not concerning right now. Everything faxed onto Birmingham and they are conversing. Next scan is Friday! I had to double check wether or not I would still be having blood thinning injections at 28 weeks as a previous consultant mentioned this once (I'd not heard of this beforehand) as I have 3 risk factors. I will be having them, not something to look forward to but needs must as usual!

The cephalic positioning didn't last long though, I didn't think it would. I'm guessing they enjoy kicking each other in the face lol

SmellySphinx Mon 05-Nov-18 18:42:57

Sorry really should have proof read that post, it's a little jumbled

comradelouise Mon 05-Nov-18 21:42:47

Hi SmellySphinx, glad to hear the scans are going well. Just wanted to reassure you the blood thinning injections are nothing to worry about... I had them as my daughter was born at 34 weeks (3lb11). I'm really squeamish with needles and pain and found them fine so I'm sure you will too!

Hang in there, just think of the story you can tell these little ones some day of how they came to be born! xx

SmellySphinx Mon 05-Nov-18 22:03:28

Hiya smile Oh I'm actually well used to be pricked and prodded and squashed and poked now to be honest. I HATED having bloods taken with my first and second pregnancies but I'm getting quite bloody used to it now, not pleasurable of course.

I will be having strong words with these two babies!!

Thank you for letting me know though, all I kept reading was how painful they are confused I don't mind really, you do anything don't you as long as it helps xxx

ileclerc Tue 06-Nov-18 09:49:52

Hi Smelly,

Glad things sound as if they are going well.

If you are up for a long read, this is the thread I was on when I was going through along with three others at the same time.

SmellySphinx Tue 06-Nov-18 15:43:39

I was halfway through then got distracted (typical me!) I will read the rest of the thread later on, thank you for posting it all makes a difference xxx

I had a surprise call this morning to say my appointment for an MRI has been made for tomorrow...I have to go to a funeral which I only found out about last night!! So it's been moved to 14th this month.

loopylou1984 Wed 07-Nov-18 10:48:07

Hope the funeral goes as well as these things can

SmellySphinx Fri 09-Nov-18 11:44:07

Thank you xx

I'm currently in Birmingham again, went to hospital with reduced movements last night, luckily my consultant was on shift! She scanned me and saw T2 has Hydrops, was transferred here this morning, now waiting for blood transfusion on anemic baby at 1pm. Sorry I've had my 1st lot of sedatives so bit carefree with the spelling haha. Haven't slept all night!

loopylou1984 Fri 09-Nov-18 11:50:45

The feral medicine teams are amazing. Stay strong for those babies.

loopylou1984 Fri 09-Nov-18 11:51:07

Fetal *

SmellySphinx Fri 09-Nov-18 12:01:39

grin feral you had me worried there for a mo xxx

loopylou1984 Fri 09-Nov-18 17:51:49

I hope it has gone okay

ileclerc Fri 09-Nov-18 17:58:22

Oh goodness you've got it all going on haven't you. Thinking of you and hope all ok.

comradelouise Fri 09-Nov-18 20:57:18

Oh god you must be exhausted. Hope the sedatives help you relax at least, and you've had some rest now. Let us know how the transfusion went xx

SmellySphinx Sat 10-Nov-18 04:05:35

Woken up for my bp check, forgot where I was haha

The operation was very quick, I got upset right before again 🙄 had to hurry up and calm down sharpish in order to keep still! It was all the medication, I'd been really good so far not crying or getting upset, just getting on with it. Once I started to relax it all tried to come out 😶

Babies seem Ok, taking their time to get going poor little things. I had a Doppler last night just to check the heartbeats and all was fine, they're waking up now a little too as I write xx

Thank you everybody xxx 🙌

loopylou1984 Sat 10-Nov-18 07:55:18

Glad to hear it went well. You did so well to not cry before then. Waiting for my laser was the worst day of my life, I still can't think of the day without breaking down.

One step at a time, strong mummy and strong babies.

SmellySphinx Sat 10-Nov-18 15:26:19

Up and down with sleeping, running out of clothes to wear, I've cleaned the room loads of times (please say it's not just me who does this lol )

Waiting for a scan since 1pm. Proper getting cabin fever now, can't leave the room in case I miss the Dr coming around which would be typical!! There is bog all to do!!!!

Husband probably trekking down tomorrow on the train whilst the older ones are at school.

God damn it I wish I could be transferred back to my hospital, they don't tend to look after babies younger than 28 weeks (27 on Sunday) so if something were to happen I'd be back here again. Plus I'm not sure if I have to stay here anyway for another transfusion as it's likely to only last a week.

I know I'm in the best place but needing to vent. Lots.


SmellySphinx Sat 10-Nov-18 15:30:05

Oh and the only pyjamas I have with me are my husband's with a ladder and a small hole in the crotch lol

I'm holding on to not cry yet, if I think about it I'll start, I'm refusing! In was crying on and off before during and after the laser, it's impossible not to (((hugs))) xx

SmellySphinx Sat 10-Nov-18 20:01:41

Had the follow up scan and the Hydrops fluid levels around twin 2 are going down, quite rapidly actually! Still around the belly and scalp but there is quite a difference xxx they're starting to move around more often now which is a good sign and a relief!!

loopylou1984 Sat 10-Nov-18 20:50:47

You cleaned the hospital room? grin
No - I never did that!

I'm so glad things seem to be going in the right direction.

SmellySphinx Sat 10-Nov-18 21:12:52

Yeah I did hahaha I was so bored! There was residue from a sticker on the cupboard, cleaned that off, left over blue tac on the wall- picked that off, cleaned smudge marks off the window and mirror! I know I'm a right saddo but there really is nothing else to do lol

SmellySphinx Sat 10-Nov-18 21:14:52

I meant husband coming on *Monday not tomorrow

Ifeelinclined Tue 13-Nov-18 03:35:42

Hi! How are you doing? I've been thinking about you and the babies

RainbowsArePretty Tue 13-Nov-18 04:24:16

I have no experience of what you are going through, just read your thread on Active. However I just wanted to say you sound amazing & I hope your babies keep getting stronger thanks

loopylou1984 Tue 13-Nov-18 08:44:17

Well I guess I only had a cubicle on a ward rather than a room so I only had a curtain or my bed to clean! grin

Hope you're okay

ileclerc Tue 13-Nov-18 19:26:47

How are you doing @SmellySphinx?

SmellySphinx Thu 15-Nov-18 09:34:38

Gosh I'm sorry I meant to update but it slipped my mind so many times!

The basic lowdown is...Had scans, dopplers, ccgs (omg those machines are so annoying!) Scan showed on Tuesday that the fluid around anemic baby disappeared completely. I finally got to come home Tuesday lunch time which I was mega relieved about! We went to the MRI appointment yesterday at St Marys with all my hospital bags packed as Dr K advised that I should be admitted for daily monitoring and thrice weekly scans. Once I had a scan there it showed that the taps is starting to reverse again and baby 2 is becoming anemic also there are signs that there is still an element of the ttts as fluid levels are started to become uneven. They didn't do an MRI. I'm too far gone for another transfusion and quite frankly it's just too risky. All the drs who have dealt with me so far have never dealt with a taps case!! I have been monitored appropriately though.

I'm due to be admitted for prep on Monday and C section Tuesday. The only problem being availability of cots for babies, it's all very dependent on the situation on the day. If there are none I will have to be transferred to either Oldham or Bolton, I really hope there are spaces!!

I'm going to request an extra scan tomorrow at my local hospital as the only two people who can perform the mca dopplers are on shift Fridays. Although it hasn't been recommended or anything after knowing how quickly things progress I think it's necessary, if anything then it's to stop me worrying myself into the ground!

I've been checking the heartbeats myself with a doppler, I know how controversial this is at the moment but I've had enough of them to know what I'm doing and I've used it throughout, not obsessively of course. I've always sought out help anyway. If I didn't have the doppler it would have been even more stressful so it'd helped me.

To be honest I've actually been quite stable, if I start melting down and crying everywhere it just won't help anyone. So calm, calm, calm and panic when I absolutely can't help it is my mantra!

Now I'm not saying I'm NOT scared, apprehensive, stressed tired..or anything! but as far as I'm concerned, scared is walking down my street, not down the garden path and is yet to knock on my door lol xx

SmellySphinx Thu 15-Nov-18 09:39:32

I'd just like to say thank you to everyone following the story, I wish I was a little more articulate about it all but I talk (a LOT) and I have to update family and friends throughout haha it gets a little exhausting but it really, really helps.

I appreciate anyones input massively.

Here's to hoping things go well wine <~~~I'll have tea wink

loopylou1984 Thu 15-Nov-18 10:31:34

I'm glad you're getting monitored well. How many weeks will you be on Thursday when you have the section?

I know the stress of cot spaces.

I was called the night before my section to say they had no spaces so might not do it. I was so worried as my consultant had told me that at this point they were safer out than in and I couldn't understand how they could leave them.
In the end my donor decided things for me as the blood flow to her was severely restricted and the doctor said 'I'll ring round the other hospitals'
I completely lost it at this point as I knew I wouldn't be able to drive after the section and also knew they would discharge me long before the babies. I think my deranged crying scared him because he had a word with neonatal and they let us use the side room that is usually for hospital transfers.

SmellySphinx Thu 15-Nov-18 10:59:24

I'll be 28+2 on Tuesday confused
The doc at St Marys (who was absolutely fantastic) said the difference between 26 weeks and 28 is quite vast so although still very premature, it's all beneficial of course we got this far.

Oh Sammy I cannot even imagine, that is my worst nightmare and what I am dreading! We have good ish links and a train station down the road more or less but the further and further we have to go, the more stressful it will be. Neither of us drive and although we have had a couple of offers of lifts from people we know, we'd be on their schedule as to when we could ask and I don't like that feeling at all.

Being told
"we can't"
"We won't"
"Not possible"

Those are the words I do not want to hear because then I will break down. I hate the hopeless feeling! As long as I hear a "but we can" afterwards I think I'll be fine.

I feel awful wishing for space if there is none because you're possibly wishing away someone elses chance at saving or having their babies saved if that makes sense...everything is conflicted, feelings etc

We're planning on having all the children with us at whichever hospital we end up at. There is literally nobody available to watch them and if they go to school will be alone at home for some time. I'm confortable with an hour or two but not much longer. My eldest in high school can watch her 7 year old sister for a while competently however I really don't want them on their own especially when I'm having an operation and won't know where before hand.

The headteacher tried to suggest we take the 7 year old into school and she could stay at the after school club until 6. The less I say about that opinion right now the better. Raging doesn't even come close. hmm It's for 1 day!!! She's barely had any time off school.

Borris Thu 15-Nov-18 11:06:03

I’ve been lurking smellysphinx but just have to delurk to wish you well. And of course your kids should be at the hospital so they can meet their new siblings. Especially if you don’t have a car and so dh can’t nip back to get them.

SmellySphinx Thu 15-Nov-18 11:12:44

Cheers Borris Xx all welcome haha
Yes I just cannot comprehend why anyone would say that? I'm having surgery, prem babies, we don't have access to instant transport and should something go drastically wrong...I don't even want to think about how stressful that would be for everyone especially the kids.

They can stuff their attendance targets up their arse, I couldn't give a toss right now!! We've had to deal with alsorts in the past 3 years, suicide, 3 deaths in the family. I just can't deal with people who know all this making idiotic suggestions. We've already explored the options to get them into school and sometimes it just cannot be done!

Sorry I will stop going on now because it really gives me the RAGE! grin

loopylou1984 Thu 15-Nov-18 12:04:50

Agree whole heartedly that your children missing a day or 2 of school really doesn't matter, but, if you have anyone at all (even a friend) who could look after them until after you've had the babies I would definitely recommend it. Neonatal is a scary place when you first go in and see your babies hooked up to all sorts, and you need to get your head round it first so you can help reassure your children. If not then I still recommend you go first, leave them in the hospital cafe or something so you can focus just on the babies.

Thinking about it rationally now it wouldn't have been that bad. I could have stayed in a b&b near their hospital or my DH would have driven me before he went to work. At the time though, it was very stressful.

I looked at it as wishing for someone's baby to go home and freeing up a space, much nicer to think about!

SmellySphinx Thu 15-Nov-18 15:53:50

Oh yes absolutely, I will leave it a while and have to prepare them before hand as well as myself. I've been doing some researching on scbu seeing pictures and peoples videos of tiny babies in the cots and such. I really didn't want to go in and be shocked knowing nothing at all although I don't think there can be enough preperation in the World, nothing will be like the reality of it. What I can do, I have done so far.

Thank you for the heads up though, any information is well recieved honestly xxxx

My brother works in the NHS although not directly with neonatal he has had to liase with special care staff so he has been able to tell me bits and bobs about what to expect.

That's a great way to think about freeing up spaces in cots, I'm quite embarassed or ashamed even that I didn't even think to view it that way. It's definitely a positive way to look at it xx

loopylou1984 Thu 15-Nov-18 19:49:32

I can promise you that although it's really scary and daunting at first, and it's a place no one wants to be, neonatal is actually an amazing and very supportive place. My girls only had 3 weeks in there, but the staff feel like family.
You soon get used to the machines and routines. Changing a nappy in an incubator gets easier too I promise!

RainbowsArePretty Thu 15-Nov-18 20:42:11

Good luck thanks

SmellySphinx Fri 16-Nov-18 12:27:43

Thank you Sammy and Rainbows smile

Had the scan this morning, the anemia is developing again of course and the MCA readings are on the rise/fall for the babies. The sonogropher gave me her mobile number and they have booked me in for another scan Sunday morning. Feeling more apprehensive now, evev more so than before!

loopylou1984 Sat 17-Nov-18 08:33:38

Sorry things seem to be going the wrong way. So glad you have such a wonderful sonographer. X

loopylou1984 Sun 18-Nov-18 08:05:33

Good luck today sphinx x

BigBairyHollocks Sun 18-Nov-18 08:23:24

Hi OP,just read your thread and wanted to wish you luck and say how very brave you seem.I will be keeping everything crossed for you and your

SmellySphinx Sun 18-Nov-18 13:20:06

Just got back from the scan, again lol! The mca readings were slightly lower but the TTTS is back again, anemic babys fluid is reducing. I had ecg monitoring and those readings were fine eventually anyway, they were wriggling around so much it was very difficult to keep contact!
They said I could go back to the hospital later on for extra monitoring if I wish to.

Oh and the washing machine door hinges have just bent, snapped and fallen off LOL!!!! I don't even care anymore.

Bloody hell universe, want to throw anything else at me!?!?

SmellySphinx Sun 18-Nov-18 13:27:48

Take THAT washing machine.

Bastard angrygrin

SmellySphinx Sun 18-Nov-18 13:31:02

Haha thank you BigHairyHollocks!!

I don't know about bravery, I'm just going with the flow. There is literally nothing else to do 'cept go into melt down, that is not an option xx grin

SmellySphinx Sun 18-Nov-18 13:35:04

Bairy* even smile

ellesbellesxxx Sun 18-Nov-18 13:50:51

Just been reading your journey so far and I am
Keeping everything x for the coming weeks. My twins are fraternal so obviously we haven’t personally experienced any of this, all I know is from TAMBA publications and their site.
Wishing you lots of luck xxx

RainbowsArePretty Sun 18-Nov-18 13:52:37

You sound so strong thanks

loopylou1984 Sun 18-Nov-18 19:59:51

So what is the plan now?

And sorry about the washing machine too.... just what you need.

mummyhaschangedhername Sun 18-Nov-18 20:17:29

So sorry you are going through this. Wishing you all the best OP.

SmellySphinx Mon 19-Nov-18 04:32:00

Plan is still the same Sammy xx

Booking at St Marys late afternoon then the fun starts.

Magnesium drip for 4 hours, chat with the anesthetist, starved at 10:30. That time isn't set in stone, as far as I'm aware from then on it's wait and see time as to when they're going to perform the c-section for Tuesday and where it will be in relation to cot availability.

When I got home yesterday afternoon I was a little on edge as the babies movements, notably twin 1s, were softer and not as vigorous. It was anemic baby who was worrying me the most as the deepest fluid pocket was noted as 1.7mm (oligohydramnios -very low fluid). I had to weigh this up with a sensible head as twin 1s fluid wasn't noted as polyhydramnios. Their levels have fluctuated and 2's decreasing BUT twin 2's levels have gone up and down at different scans... I spent a good few hours trying different positions and drank water regularly to stay hydrated and hopefully to up the fluid level. Not hugely proven to change things but it could help and won't do any harm...

I suspected that he had changed position as they've done regularly and that was causing the softer movements, plus anterior placenta. I kept checking the heart rates because I know what's normal for them both. 1 is 130-135 and 2 is around 140+.

I decided not to go back for more monitoring as I noted enough soft/hard movements to keep me satisfied it was nothing more than different positions.

Obviously I have to say that if anyone else happens to read this experiencing the same issues that none of this was recommended to me, it's what I chose to do considering previous experiences and I had already had a scan and been monitered. They were moving, hearts beating etc...all individual to me and my circumstances. Plus I am booking in tomorrow anyway.

I just woke up randomly at 3:30 and here I am lol, babies are wriggling.

If I become concerned again later on this morning I won't hesitate to go back to my local hospital for more monitoring, best to keep an eye on things.

Oh washing machine is years old and has been good to us. It was already here when we moved in and Landlord said use it but if it buggers up or leaks then we're responsible for it. I had already bought a replacement catch for the door years ago when that snapped so it's done its job grin Could have picked a better bloody time to break though!!!! No matter, at this point I'm not sodding bothered in the grand scheme. We'll have to use a laundrette if things get desperate and whack a cheap new one on the credit card.

SmellySphinx Mon 19-Nov-18 14:09:25


I've got a cold now, literally TODAY it decides to start.

SmellySphinx Mon 19-Nov-18 14:12:57

You know those people who have the incredible misfortune to get struck by lightening more than once in a lifetime? I can relate to them right now!! hmm

SmellySphinx Mon 19-Nov-18 14:14:23

Oh and thank you to everyone wishing us well, I have read your replies sorry if it seems I'm being ignorant xx

comradelouise Mon 19-Nov-18 21:41:23

Good luck for today/tomorrow Smelly!

Been off having a bit of my own pregnancy drama, so sorry that this is a bit out of date now, but I was thinking, the teacher was probably just trying to be helpful suggesting your daughter stay in the school in the spirit of offering you some free babysitting? But totally agree that's not what's right for her!

And also just to say that you might know this already but just in case you don't... if you give birth in one hospital that doesn't mean the new arrivals need to stay there. My daughter was born in Woolwich because King's (my local hospital) didn't have a spare cot in the NICU. So we had a 2 hour bus journey each way every day, and so we requested to move back to King's as soon as they had space, which they did for us after 10 days.

loopylou1984 Tue 20-Nov-18 10:22:45

Thinking of you today xx

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