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.

twinnies - CONGRATULATIONS!!!! I am crying with happiness for you being the last of a very brave bunch to bring beautiful babies into the world. WELL DONE!! I am SO happy for you. What wonderful news and beautiful names. They are tiny indeed (Sophia was 3lb 6 and I remember thinking she was too tiny to survive) but they will soon podge up. Congratulations to Mr Twinnies as well, you have both been through so much.

Cake - WONDERFUL to hear that you have been reunited with your girlies. Both my girls were predominantly tube fed for the first 2 weeks. Breastfeeding twins is bloody hard work and even harder when they are so premature. I wish you all the luck in the world if you hope to continue to BF but PLEASE don't beat yourself up if you decide to go with bottle feeding either expressed milk or formula. It was the only way I was ever going to get home as my girls just wouldn't breastfeed well enough for their tubes to come out. Anyway, hopefully you'll have more success than me and you and your bambinos can come home soon. Do they have names yet?

phlossie - thank you for your lovely message. It made me cry (but I was still going from Twinnies' news anyway!).Medical science is indeed amazing. I remain completely in awe of everything that was done to get my daughters safely into the world.

I will keep checking on a 5-minutely basis to see if there are any updates!!

WELL DONE ALL!! We are a super-clever-baby-growing bunch!

Oh god I'm a weepy old woman at the moment. I just re-read the start of this thread and our 'stories' when we were first diagnosed. Can't believe that from those horrible, dark times, all our babies beat the odds and are here safely. Don't know why I'm crying, it is just beyond amazing and I'm so happy. Must go and snuggle my girls again, I love them so much.

You lot have made me cry enough times! Blame the pregnancy/new mum hormones (and lack of sleep on your part!)

Congratulations to all you wonderfully brave ladies, and your 8 happy bouncing girls. I didn't want to post earlier as I wanted to wait until all babies were safely here. Sadly the only other experience I have had had with TTTS was when a friend unfortunately lost one of her boys, despite laser treatment. It's so lovely to hear happy outcomes.

Wishing you all the best with your new families

Twinnies congratulations to you!!!!

Twinnies news has set me off emotionally too. That's all of us! Four mums unsure of the future of our babies, and now - 8 baby girls! How brilliant is that? What clever babies!

Twinnies I know you will be busy, but we'd love updates on how your little lovelies are doing. How are you feeling? How was the section?

My two (imani and Erina) are making steady progress, not quite regained birth weight yet but both gaining and out of hot cots now and feeding slowly improving. I want to introduce bottles soon, but since I plan to mix breast and bottle feeding, the midwives want to concentrate purely on breast first. I think they are hoping I will just stick with it but I've breastfed two babies before, so I know how all consuming it is and will definitely start on bottles! They won't give them Nutriprem, just regular cow and gate which they were quite sicky on, I have to concede they keep every drop of breast milk down, (still going to introduce bottles though).

gosh, I'm so chuffed. Well done all of us! Chesticles and Phlossie thank you for such sweet posts, it's great to know that you have been reading.

Wow. So happy

hi everyone!

sorry my last message was so rushed and full of spelling mistakes!

Can give a proper update now! as have decided i will stay in bed for the next few hours - i think i overdid it abit since surgery going up and down to the girls and am now suddenly 48hours after surgery in quite a bit of discomfort!

So - the girls updates first - most important! We have a reasons of concern for Esme. Her issues are pretty normal for any premi baby though - she's clearly not as strong as Clara (Esme is the donor) and has not been able to regulate her breathing and was put on antib's as they also though she was seceptable to infection. She certainly does not look as strong as Clara and is still on fluids.

Another development this morning(and don't freak-i'm trying not to as a little emotional at the moment!) is that a cardiologist assessed her heart as they were still not happy with breathing and saturation-level of oxygen in her blood He found two small holes in her heart and a problem with the pressure levels in an aorta. Her level is still of that in the womb and hasn't regulated, he says not really anything of huge concern just yet, that really she should be in utero and that's why she can't stablise the blood flow in that area. He has prescribed some medication and will reassess her in 2weeks time. He said worst case scenario would be that in 6 months or a year she would have to have a stent put in - but he imagines situation will rectify itself - please god she'll be fine - i admit i'm extra wobbly about it all now as tired and sore after the section and overly emotional about everything at the minute, Mr.Twinnies is keeping a level head so that's good!

Clara is doing just fine - she's off fluids and latched on twice yesterday and had a good suck - othertimes she just fell asleep so i couldn't attempt to feed her.The nurses are all being great and helping me to learn to feed - but they also now have Clara on nutriprem as we're still waiting for my milk to come in properly.

Section overall was fine for me apart from this avo the pain wasn't half as bad as i had expected. Glad it's over with though and we have met our gorgeous little girls! They have really sweet blond hair and big eyes :) We're both so happy to have them in our arms now, it's just the most wonderful thing in the world. I get teary everytime i see Mr. Twinnies hold one of them and i see how smitten he is! Having them in ICU has been stressing me out abit today but please god in a few days Esme will have regulated herself a little better and start improving.

Cake Silverangel and Mr.sS* i'm so delighted we all managed to bring our little girls into the world - there's still a hell of alot of growing and developing to be done but we really haven't done too badly!!!

Hope all of your girls are doing well! :)

Going to check out now!
Will update again soon xxxxxx

Twinnies - CONGRATULATIONS!!!! Thrilled for you and Mr Twinnies. Wow, am so thrilled we all made it to the end safely. Both of mine were on antibitoics for a couple of weeks, actually, I think they were on three different sorts, it all seems a bit of a blur now. They didnt need them as such, it was more to prevent them getting any infection. Poor Esme - I'm sure she will come on in leaps and bounds and won't need any further treatment. It is stressful having them in ICU, and your hormones will be all over the place right now. Try to take it easy now and not over do it too much!

Cake - sounds like Imani and Erina are coming on well. The feeding is the hardest part. As I had such supply issues I gave up trying them on the breast - they wouldnt consider letting them come home until they were finishing every bottle completley without topping it up by tube and they had to do that for 24 hours. I remember at one point thinking we were never going to get there but they suddenly got it and had the strength to finish them without falling asleep. Now, they finish 100mls in 5 minutes!! One bit of advice if you are going to introduce bottles would be to bring the bottles / teats you plan to use at home into hospital so they can get used to them instead of the hospital disposable ones.

Mrs S - your post made me laugh! I'm going to read back through this thread, no doubt I'll be a weeping mess by the end of it. You know it's only know that I am not terrified every minute for their health and am starting to relax and enjoy them (even if they did keep me up literally all night last night!). Oh, meant to to say the tetrapaks are the ready made stuff so hopefully it doesnt cause you any more problems. Mine have gaviscon in theirs which thickens the milk so it can't escape to easily - might be worth looking into if they're not on it already?

We're all doing well, I ordered a sling that arrived yesterday, it's a revelation. Was able to convert the buggy to single, put Alice in the sling and go to the doctors (the surgery door is too narrow for the double to fit through). Also if one is angsty during the day have popped them in and still have hands free to do stuff like clean bottles (I hate that job) or pick the second one up more securley with both hands.

I am just so so pleased that we have all made it this far - such a fantastically brilliant outcome after such a horrid time.

Chesticles and Phlossie - thanks for your messages.

Much love xxx

Hi all,

Twinnies thank you for your update, I can imagine how wobbly you must be feeling, any little issue with our babies feels massive, but you sound really strong. Remember that all our twins beat all the odds just to be here, they are proven fighters.

You've got to rest up a lot too, I found day 3 after the section annoyingly painful, then it just turned a corner the next day, what do the hospital plan to do with you once you are discharged postnatally? Do they have accommodation for you?

Erina is back under phototherapy lights for the third time, the bilirubin levels just keep bouncing back up, the suspicion is it's a little side effect of the twin to twin transfusion, she hates the incubator though, and being separated from her sister as they really settled each other when they were sharing a cot.

I was reading your very original post MrsStevo, I actually shuddered remembering all that.

Silver, slings are great aren't they, it always takes me a while to get the hang of it, but the babies love it don't they!

Much love to all of you, the littlies and the biffas

A quick log in!

Cake how lovely they have had your girls in the same cot! I hope at some point we can do that here too :) I keep thinking they must mis each other so much at the moment!

Here's hoping Erina will finish her light therapy soon enough. I love their names by the way! Really lovely :)

We're doing fine here - I'm being discharged today - the sister of my unit has been really nice and said that i can keep the room until 4pm - rest and express and go up and down to the girls for the day. Then Mr.Twinnies will pop up and we'll stay into the evening and then head home. Hospital still can't offer any parent's rooms to us, so we will rely on some friends to put me up every second night - i guess we'll work it out over the next few days. Feeling a little sorry for DH as he will be in work and then do a two hour plus round trip to see the girls most evenings - anyway it is worth it! We can't imagine a day going by without being with them!

Any idea on when your girls will come home?

Clara is doing brilliantly, back to birth weight. Once she's 1.8kg they siad she can move to a cot. Esme is still the same :( poor pet is starving and really cranky and unhappy with her tubes. She can't come out for cuddles that often either, but when she does we kangaroo cuddle her and she is automatically much happier.... hoping in next few days she'll perk up. We'll see what the docs say on their rounds this morning!

Hope everyone doing well. xxxx

Hello,

Poor Esme Twinnies, I hope the docs had good things to say this morning. It will be difficult when you leave and leave them behind, esp not living so near. We were lucky (if you could call it that!) that Sophie and Alice arrived during the school holidays, Mr Silver is a teacher so he didn't have the added stress of going up after work every day. Also, me not being able to drive for those six weeks it would have been a nightmare. Stay strong and I am sure you will figure out a routine that works for you. I would say and sure the nurses on your SCBU ward would agree - don't exhaust yourself with travelling and visiting, you will be no good to the girls if you're exhausted (mentally and physically). We ended up going up at about 10am and leaving around 5, we had been doing two visits, one in the morning and one in the afternoon / evening but it was too much and we both were reaching breaking point.

Cake, has Erina come out from the lights yet, if not hope she does soon. Its so nice for them to be together.

We've been doing well - the last two nights both have slept past their 2am feeds until 3.30 so have been getting slightly more sleep!

Mrs S - hope you're all well.

xxx

Hello,

Kangaroo cuddles are magic aren't they?! It's like baby narcotic. Twinnies I'm glad to hearClara is back to birth weight, I'm sure esme is planning on catching up pretty soon!

Erina is out of lights but it's possible she's rebounding again, we have to wait and see, poor girl has had so much blood taken from the last fortnight its unbelievable.

I was up almost one feed time to the next last night, the babies seemed to have had enough milk and wouldn't re-latch, but not settle either! Problem with earlies and breastfeeding is it apparently exhausts therm if you keep just putting them to the breast, it's all very timed and calculated how long to feed them for, and the signs of exhaustion are eXactly the same as sleepy/hungry/windy/anything else. I Am confused!

How is it all going with you all? Silver and mrsstevo, are you in routines now? How do you find the sleeplessness?

Xx

Hello,

Cake - we had the same problems with bottle feeding and it is sooooo frustrating. Think I said before but in the end it was the only thing still keeping us in hospital because they wouldn't take the tubes out until they had the energy to complete every bottle within 24 hours. What gestational age are your girls now - I found when Sophie and Alice got to 36 weeks they came on in leaps and bounds, one day they still hadnt manged it and the next day they were coming home!! I really admire you for perservering with the breastfeeding, I found the expressing soooooooo exhausting.

We are in a very strict routine - I think with you two you need to be. I'm a bit anal about timings as well so it suits me to know what I'm doing and when. They came home in a 4 hourly feeding routine and our day goes like this:

6am - feed
7-9am sleep
9am play / kick about / tummy time
10am feed
11am-1pm sleep
1pm-2pm play / kick about / tummy time
3.15-4.15pm - go out for a walk
5pm-6pm - play / kick about / tummy time
6pm feed
6.30 - bath every other evening
7pm-10pm sleep.
10pm feed
2am feed

I've found that they sleep much better at night and are more settled when we follow this. I've been quite strict, visitors aren't allowed to wake them when they are napping! They are taking their naps downstairs at the moment, either in their carry cots or bouncy chairs at first to get them to nod off (if you dont have bouncy chairs, get some, they are a saviour!!) but we are working on them going down in their cot upstairs. They also slept past the 2am feed again last night until 3.15 so I'm really hoping that might be a sign they may soon be ready to push on through the night. I then fit in what I need to do around their sleep times and because I go back to sleep when they do from 7-9am, I'm not tired during the day. During the week I'm doing the 2am feed on my own as Mr Silver is beyond useless when he is tired so I've sent him to the spare room during the week. I was planning to have a night in the spare room at the weekends but havent done it yet - again, a bit of a control freak and even though I know Mr Silver is more than capable I kind of want to make sure he's doing it right (obvously haven't told him that!!). I have to be honest though, if you are exclusivley breast feeding I think you are going to have it a lot harder, do you plant to express so Mr Cake can help out or will that just confuse things for the girls? I never succeeded in getting mine to take to the breast so not really sure how mixed feeding works.

Hope Erina doesn't have to go back under the light and Twinnies, hope Esme is doing better?

xx

Hi there ladies!

Cake I have had the same problems with Clara re breast feeding - some nurses very keen to encourage me to and teach/help me, then others not as they couldn't 'monitor' exactly how much she was getting and she has also used too much energy sucking and then slept not taking a full feed!

I'm really keen to breastfeed too - although i'm wondering how it will now work as i'm not near them and will be lucky if i make it for one feed a day - she's now on four hourly feeds. That being said when Clara comes to me you can tell she prefers it much more to bottle and she is a little guzzler. Esme of course has not come near me just yet.

I'm expressing like a maniac - every 3 hours - i think it's making me really tired but it'll be worth it! we splashed out and bought the medela pump in style and it's been brilliant so far - am pumping about 400ml plus a day now which i'm hoping will increase as it's only been 5days of pumping.

Hope Erina is off the lights?

We went up to visit the girls last night - forgot to take feeding schedule into account and we arrived literally after Clara had been fed so missed out on feeding and then the nurse didn't want to take Esme out of incubator as she had had tube feed and was settled - so i was abit disappointed :( We cuddled Clara anyway, i keeping feeling like poor Esme is missing out on contact with me/us. Mr.Twinnies has only managed to hold her twice - but i'm sure it will improve as the docs are much happier with her progress now :)

Decided to be sensible and stay at home in bed today and go up again this evening when Mr.Twinnies comes home. I was quite slow walking from the car to hospital (10mins) so i still think the long bus journey and 20min walk through the city would be a stupid thing for me to do at the moment!

Silverangel - you sound like you have it all under control! Well done! :) I"m reading Gina Ford twins at the moment and trying to work out a little routine to follow too! I think you're right not to let people wake them - we are also going to be strict about it all once the girls come home - i also think with two you need to be and like you i function better when i have a plan and know what i should be doing and when!

Mr'sS hope all is well!

xxx

Hi all,

Silver, I am keeping a copy of your schedule for when I go home! I will also be strict I think, I keep hearing how important routine is for twins.

Unfortunately the photo lights are back on again. This is the fourth rebound. The doctor seems unworried and says it's just a matter of persevering until her liver matures. So it could be this rather than the feeding that keeps us here the longer! It is sad to see her unhappy on her own in the incubator, they so liked sleeping nose to nose together.

The girls are 36 weeks now, Imani is on 2 breastfeeds to a tube feed, so that is some progress, every time erin a comes out of lights she catches up quick though.

Twinnies, I am amazed by your breast milk production! All that only on day 5 is incredible! I'm pleased to hear Clara is keen, I'm sure Esme will relish it once she's able.

I am banking about 120ml bottle of expressed milk a day to take home in the ward freezer, that way mr cake can certainly have a go at helping with the feeding for a bit!

I also have gina ford twins. I'm a bit envious you lot were on 4hourly routines at the hospital, I'm on 3 hourly and it is gruelling, I must admit I don't express every 3 hours, just enough to keep supply ahead of demand.

And it's feeding time again!

Cake it's brilliant you are getting so much 'breast' time with the girls :) - i'm going to chat with them today about it. I'm going to brave the bus journey and hang about for a good while and try to put at least Clara to the breast for a feed or two if i can. They are drinking only my expressed milk now :) but i'm getting concerned that they are not latching onto me enough and that then when i bring them home and try to introduce more breast they won't take it and it will back fire on me! I don't want to be hooked up to the pump for months - it's driving me mad already!!

Sorry to hear Erina is back on the lights - im sure really soon she won't need them!

It's so great you are able to stay with them and bond like that! I admit i'm envious. At least you are still all together, even though i'm sure you're fed up of being there!

I really hope our girls are home soon - but i'd say it will be another 10days minimum at a guess or longer who knows. They must be promoted from ICU 2 to special care unit and then they can 'graduate' (!) and can come home!

So we're all going to Gina Ford it eh?!

Got to get myself out of bed now and head off for the day - Mr.Twinnies is working really late tonight so just me with the girlies!

xx

Hi again,

Twinnies, really don't worry about the latching thing, you should definitely push for more breast time if you want it, it is a form of kangaroo care after all! Silver is right about the 36 week thing, mine are just over and improving rapidly. I didn't understand all the rules in the beginning about timed feeds and how many minutes to a feed, but it is really paying off, it seems the girls have been trained to take a feed more efficiently and quickly!

Both girls put weight on and are passed their birth weights, and from now Imani is going up a regime to all breastfeeds, no tubes! If she puts on weight, that's it, she's ready. We then just have to wait for Erina to kick the jaundice and catch up.

I hate the breast pump, useful, but such palaver.

Can you believe Mr. Cakes nighttime reading is Gina Ford Twins! I never thought I'd see the day, he keeps ringing me to tell me snippets, he can't wait until we all come home so he can try out his new knowledge!

Silver and Mrs.stevo, how do you find being out and about with the twins, is it easy to organise things to get out within your routines? I must say, the two of you are my twin gurus as much as Ms Ford!

Hello,

I've not been able to log on for a few days because blackberry wasn't working, I've been wondering how you were all getting on!!

Took the girls to weighed this morning and they are 6lb15 and 6lb13 - thrilled that they are doing so well.

Cake - getting out and about was daunting at first but its absolutley fine now I'm used to it. Have had to adjust how I do some things - if I need to pop to the shop for something I now have to walk a bit further to the supermarket instead of the corner shop as can't get through the door with my buggy but the extra exercise is good anyway:) The clinic was awkward this morning - had to leave the buggy outside and stand in a queue so poped both girls in one carrycot and carried that. You'll find a way to get round things. Also be prepared to get stopped ALL THE TIME. Ive found though that if I'm in a hurry I just don't make eye contact with anyone and then dont get stopped.

How did Imani do on all breastfeeds and how is Erina?

Twinnies - hope the bus journey wasn't too much for you!

xx

Hellooooo!! Sorry for the radio-silence, the girls are keeping me so busy at the moment that I just about get time to read your posts but not to reply!!!

Cake - firstly, beautiful names for your girls!!! They seem to 'match' each other perfectly if that makes sense! Sorry to hear that Erina is under the phototherapy lights so much. She must like sunning herself! Sophia went under them twice and would have been back under a third time I think if I hadn't have intervened and insisted on sitting with her by the window for a while - the natural daylight seemed to help sort her out. You are doing SO well with the BF / expressing - well done. It is absolutely gruelling, as you say, but well worth persevering if you are able to. I loathed my breast pump- could've thrown it out the window almost every day - but I was quite sad when I packed it away in the end!!!

Twinnies - so sorry to hear about Esme's heart issues. I really hope that as she grows, the problem will rectify itself. I know what you mean about being disappointed that you can't hold her as much as Clara - we were the same with Sophia. The nurses wouldn't let me take her out of her incubator very often, despite the fact that she was clearly SO much happier skin-to-skin with me. It almost felt like I was favouring Madeleine because I held her so much more, but we have made up for it now I think. I know it is hard but once Esme is strong enough you can snuggle her to your heart's content. I, for example, have Sophia under my top fast asleep (and snoring!) now. You sound like you're being very sensible about visiting and expressing etc, it is so important not to overdo it as it also has such a detrimental affect on your milk supply. I found it VERY hard to relinquish control of feeding etc to the nurses as I was all "they're MY babies, I'm their mum, I should be doing it all". Think I was my own worst enemy really and it probably contributed towards my exhaustion, poor milk supply and eventual giving-up-breastfeeding.

Silver - brilliant to hear that Sophie and Alice are doing so well!! Turning into little porkers!!! I quite agree with what you said about breastfeeding though, I have an enormous amount of respect for anyone who successfully breastfeeds twins. I honestly don't know how people do it - I think I would find it so limiting as discreetly BF one in public is difficult enough but having both boobs out at once would be impossible to disguise!! Our girls have just come on so well since they've been bottle fed that I wonder what the hell I was doing trying to breastfeed and express for such a long time. That said, the ready-to-feed formula was a DISASTER. Sophia was clearly in agony after drinking it and was completely inconsolable. So bad that I had to crack open the calpol. Poor little love. I have tried infant gaviscon for the first time today. The GP wouldn't prescribe it as he doesn't believe that Sophia has reflux (despite her projectile-vomitting her WHOLE feed at least twice a day!!) but a friend has given me a few sachets that she had left over so we're giving it a go.

Vis a vis routines, the only thing we have tried to implement is the basic sleeping and feeding times that Gina Ford prescribes. I don't agree with her general principles about sleeping in a darkened room, waking when they're clearly knackered etc as they go against my instincts. We're more about attachment parenting really and try to be as baby-led as possible. Fortunately, the combination of the two is working - the girls sleep from 7pm-10:30ish, down again by 11:30 and up around 5am now, back to sleep after a feed until 8am ish. During the day they are much the same as what Silver said. But we don't follow anything to the letter really and try and adapt their routine to suit the day. The girls are very happy sleeping in their carrycots during the day and always head off to sleep if they're out and about in the pram so I try and time trips out around their feeds and it works well. To be honest though, I think it is about when you start trying a routine as we started trying at about 6 weeks (so they were 1 week corrected age) and they clearly weren't ready as they wouldn't settle when they were supposed to. I think it started being more successful around 9-10 weeks really. Since then, DH and I have been able to have dinner together and have a bit of an evening again which was very important to us.

As for us, the girls are doing really well. Madeleine is 10lb 11oz and Sophia 9lb 4oz!!! Couldn't believe it when I saw the scales! They are much more alert now and a little bit more interactive. They still aren't smiling yet though (they are 12 weeks, but 7 weeks corrected age) but are SO close. It is frustrating when all our NCT friends' babies are already laughing and rolling over!! I have to keep reminding myself that the girls were premature AND went through a hell of a lot in utero so the very fact that they are alive at all is amazing.

Blimey, EPIC post. Must get one here more often so I have less to say all at once!!! I will scoot now but will keep up with all your news!! Well done ladies for being so brave whilst your little ladies are in hospital. Big fat fingers crossed for them all coming home soon x x

MrsStevo, it's good to hear from you! It sounds as though your girls are doing really well. They may be doing milestones according to their adjusted ages, but over time they will catch up.

I have cracked! I am expressing into bottles and feeding my girls that way. It is so much better, Erina still likes to latch though so I top them up with breast time, they so far seem to suffer no nipple confusion. And I could be outta here in the next day or two. Thanks for your experiences Silver and MrStevo, it was your posts that inspired me and it really feels like the right decision, it has been so stressful trying to gauge a full feed on the breast and worrying about it!

I am renting the hospital grade breast pump for 6weeks while I figure wether to introduce formula or carry on with breast/breast milk.

How are you all doing? Twinnies how are your little ones?

Hi everybody!

Thought i would check in quickly before life becomes very very hectic!! - Clara is coming home this evening :) but little Esme is staying for about another week minimum, they can't say exactly yet :( We're delighted but also thought we'd always bring them both home together to be honest. Bit sad to leave Esme behind. We just spent last night tearing the house apart trying to organise baby furniture - we had thought we had the week at least to get organised!

We're also not sure how we will now manage with one baby at home and one in ICU (because of the distance and me not being able to drive), my mum is coming up to help out and to mind Clara when we go up and down to the hospital. Can't bear the thought of not being able to get into Esme because we have Clara at home! We'll work a system out i guess anyway.

Esme is doing much better - still in an incubator, but she's doing fine and they're happy with her progress. The cardiologist came to see her again and he is much happier with her little ticker :) One hole has already mended itself and the pressure issue has also resolved itself. Still one hole left, but it has reduced in size so we just have one more appointment in six months time to check it out. He expects it to have also disappeared by then - so fingers crossed.

Cake - i also express and top up with breast and it seems to work for us, although i've only made two feeds a day as i'm not staying with them. we'll see how it goes now that Clara will be home! I'm much happier expressing somewhat because at least i have an idea about how much they are getting, I'm always paranoid that they have not had enough and being so small want to make sure they can grow fast enough!

silver and mr.sS sounds like both yourself and the girls are doing fantastically!! :) The girls sounds so healthy and content! I'm slightly nervous about getting a system/routine going - at this stage just want to stop waiting to try life with twins out and just get going!! The staff in the hospital have been fantastic though and have taught us so much, the girls also have a pretty good feeding routine set up so we're going to try and stick with that!

So wish us luck with Clara!Can't believe tonight there will be a little girl sleeping in the cot beside us, here's hoping Esme will follow very quickly!

Btw i met a lady in ICU picking up her second male twin to bring home - they were also TTTS - the only boys i've seen to survive! Her story was much worse than mine - much more trouble after surgery and her boys were very poorly upon delivery. We've all been so so lucky.

Chat soon

xxx
(the half seven news is saying snow?What the hell is that about?!)

Hi all,

Twinnies that is amazing news about Clara coming home, also so good to hear Esmes heart is doing what it should, tough little cookies aren't they! It's good your mum can help out for a bit, do you think it will be possible to take Clara with you when you go to see Esme?

We are also going home today, so it is pretty exciting all round, I am wondering how to organise school runs and things in between feeding times, the girls are doing well though, feeding like crazy and piling on the weight. Both are still a bit jaundiced and have had blood taken for final checks (if doctor tries to stop them going home there will be hell to pay!)

Good luck tonight, I hope you get some sleep rather than watching her all night!

Can you believe the discharge nurse 'forgot' to tell me on the phone this morning that Clara had to be out of the unit before rush hour - so cut long story short by time Mr.Twinnies came up with car seat etc.. we were too late! so she is staying the night and we're getting her in the morning. We can't bring Clara back in to see Esme/ unit once discharged - so we're gradually working out a schedule for the coming days!

Cake hope your first day at home runs smoothly! I bet the rest of your gang are dying to have you all finally home! :)

xx

Hi, quick update before trying to get a snooze before next feed!

We have been home since monday, its so good to be home!!

I am tired! the babies are doing well, but the regime of feeding and expressing is gruelling. I am gradually introducing formula feeds. They have gained weight since coming home which is good, I was warned they can lose some on coming home just by being unsettled in the new environment, early babies seem to be able to lose weight doing anything, even feeding for too long! Erina is now 4lb 13 oz and Imani 4lb 7oz so I am pleased about that.

My brain is a bit foggy from lack of sleep and I am dreading it when Mr Cake has to go back to work week after next, how will I cope with the two older ones aswell!

Twinnies I hope you are doing well at home and you are managing to sort something out for Esme, it is so tricky prioritising, but remember not to flog yourself, you will have Esme with you soon enough, she is having good care where she is and Clara will be teaching you what to do!

Silver and MrsStevo, how are you all doing?

Hi Cake

I'm sure the regime is gruelling! We just completed our first double feed and it took 1 hour 50mins (three nappy changes, two outfit changes, breast time and top up expressed milk bottles!) We can only get better and faster i guess. Some success anyway as Clara is fast asleep in carrycot (moses basket out the window) and Esme is fast asleep on my chest!! :)

When i rang in this morning to confirm her feed times they told me she could come home today - even though yesterday they said it might be mid week!

So finally - the last baby of this page has made it home!! I'm so happy for our little family and all of you too! All of our babies made it,despite the percentages :) :) just been sobbing my eyes out with Mr.Twinnies. I just feel we are all so lucky and blessed!

So we await out first night of feeding! Here's hoping it goes well!

Cake i feel like throwing my pump against the wall , it's wrecking my head at this stage! I'm hoping having both babies here at home i won't need to pump around the clock,can nurse more directly and am also hoping things might be easier in a way as we wont have night feeds and then to travel to the hospital during the day - can catch up on sleep when they do and just hang out on the couch if i want/ need to!

Mr.sS and Silverangel hope you and all the girls are well.

Mr.S my facebook profile pic has the girls on it if you can remember where to find me!

So so happy! :)

xxx

Twinnies How exciting that Esme is home aswell! Well done Clara and Esme!

Do you have a neonatal community midwife team visiting you? Our health visitors are not coming until the neonatal team sign us off.

Your feed times will get faster! I have had the rental pump for one week now and I had originally thought I would keep it for 6 weeks total, but I'm kindof ready to send it back now! it is just a background sense of duty i think to continue.

Can I ask another question to my twins gurus - Silver and MrsStevo. In the earlier days, how consistent were the babies at taking bottles and finishing them according to the 3/4 hourly routine? How long did they take to finish a bottle? I am finding my girls sometimes do really well and sometimes I am spending 20-25 mins to get them to finish a bottle of 50-60mls. I wonder if I am overfeeding them and then trying to get them to take another massive feed only 3 hours later and they are still a bit full.