New to this and struggling

[raquel1980]

Hi all

I had my twins, Hannah and Max, last Thursday at 34+3 so today they are a week old. Their weights were better than expected - Max was 4lb10 and Hannah was 3lb12. They both started off needing help with their breathing but Max is now off the CPAP and breathing ok on his own. Hannah is a different story, she was taken off the ventilator yesterday and put onto CPAP and seems to be doing ok although had a really worrying de-saturation this morning where they had to help her to get her breathing back to normal again - it was terrifying. Hannah also has some other problems, she was a club foot due to her having low fluid throughout the pregnancy which meant she was all cramped up and today we were told she has a cleft palate. They are also doing genetic testing on Hannah to see if there is anything more serious wrong with her.

I just feel so hopeless, they always seem to be doing something to her and it's just heartbreaking to watch her little face all screwed up - you can see the pain she's in and I can't do anything to help. I know they need to do all these things but it's so awful to watch. They also said as we were leaving today that she has low haemoglobin so that will need to be topped up tomorrow - does this mean a blood transfusion? They didn't say that but my husband thinks that's what they'll do.

We were also told today that we will be transfered to our local hospital at some point - it's not somewhere with the best reputation and we really feel strongly about being kept in the same place but it just seems to fall on deaf ears. After my difficult pregnancy where I was transfered to 3 different hospitals I'm just so sick of being told what's going to happen rather than there being any kind of dialogue.

I'm just really struggling to cope, think the hormones have kicked in too which isn't helping, but spent most of today in tears at the hospital. Does it get easier??

Sorry this has turned into an essay but I just needed to get it all out xx

 

[AP]

Hey raquel,

Congrats on Hannah and Max! They are wonderful weights!

It does sound like Hannah may get a blood tranfusion - my LO Alex was 27+4 and had 2-3 and they were nothing like I expected - they boosted her up so well and no problems, Alex was fine having it done, just a drip in her hand for a few hours, thats it! Haemoglobin levels that are low leave baby feeling tired, Hannah sounds just that and thats probably why she needs more help with breathing and CPAP.

You'll find after a blood transfusion Hannah might really peck up a bit!

The other girls on here have experience with hospital transfers and I have seen members, who arent preemie mums, but do have experience with cleft palettes and club foot! If I find them i will maybe ask them to drop by with advice? xxxx

It really DOES get easier, I promise you that. xxxx

 

[Fiestagal]

Congratulations on the birth of your babies! I've been looking out for an update.

I can't help with some of your questions but I'm surely other more knowledgeable ladies/gents will be along soon.

Your hormones will be all over the place, I spent a fair few days in tears

 

[katy1310]

Hello, and congratulations!

I would totally echo what SB22 said. Sophie was born at 27 weeks exactly, weighing 1lb 13, and she had to have a blood transfusion. I was so scared that day as it sounded like such a big deal, but when I spoke to the nurse about it, he said that almost every baby in the room had had one at some point, and it was completely normal. It certainly perked Sophie up a lot - she'd been desatting a lot before it, and it really helped her in that respect. I didn't realise how pale she'd been looking until after she'd had it, and there was such a difference.

Sophie was on CPAP until she was 37 weeks and I seriously thought she was never coming off it! It's not an easy time, but like SB22 said, it does get easier. Something just kicks in and keeps you going and it's only when you look back, you wonder how on earth you did it without cracking up, and you think you could never do it again....but I'm sure if I really had to I would cope, just the same as I did this time!

The thing that I found really helped was concentrating on every little milestone and every piece of good news, like when Sophie put on weight, came out of intensive care and into high dependency, when she went into a cot and started wearing clothes, first cuddles, all the nappy changes (the nappy changes and feeds are such a big deal in there because you get to do so little for your baby!).

We were not in our closest hospital. I was booked into a hospital that was around 35 miles away but I got transferred to a bigger hospital with a better neonatal unit which was 60 miles away. They kept talking about transferring Sophie to the closer hospital but we just kept saying that it wouldn't be so easy for us - DH works really near the one Sophie was in, so he was able to go in every day after work and meet me there. The other hospital was so hard to get to despite being closer and just not possible for DH after a day at work. They said that they would keep Sophie there as long as they could, and that she'd only be moved if they needed the cot space for one of their "own" babies, ie one whose mum had been booked in there for giving birth. We ended up staying there for the whole 12 weeks, thank goodness.

You will be suffering from hormones at this point, I remember mine kicked in on day 4 and kept going for a couple of weeks. I spent lots of time in tears when I was still in there - and even if you were prepared for them coming early, it's all still a big shock to the system and a whole new world for you. I had a couple of weeks warning that Sophie would be coming early, but I still felt like I'd been catapulted out of my normal life with my nice easy pregnancy and suddenly into this world of major problems with my pregnancy, my life and Sophie's were in danger, then I had her by emergency c-section, I was suddenly on maternity leave 9 weeks earlier than planned, and she was in neonatal....

One piece of advice I would give is make sure you take some time for yourself - it gets very intense in there, and we used to keep Sundays for us, just to catch up on sleep, doing the chores at home etc - it was awful being away from her but we did need that time. It would have been easier for us if we hadn't been 60 miles away from the hospital though, then we could have just had a visit with her and come home!

 

[Mincholada]

praying for you hun!!!!!

 

[Agiboma]

congrats on your twins, my little guy had 7 transfusions he was born @ 25 + 2 they are so routine and normal, and often times the babies stop desatting and having brady's after the transfusion. i dont have ant experience with the cleft pallet so i cant comment, but im sure someone will on here

 

[Laura2919]

Congratulations on the birth of your twins. I never really experienced blood transfusions as I was lucky with the girls. Chloe was only on Cpap for a day and Jaycee was on for 3 days. I know its hard but it does get easier. They make little steps which are huge to prem mummies and you will see it gets better. They are good weights hun.
Where did you end up giving birth to the twins? They wont transfer you back to Mayday unless the babies are strong enough to nearly be going home they dont have an NNU that can cope with anything else. They were going to send my girls there but they couldnt because Jaycee had a long line..

 

[raquel1980]

After a good day yesterday I'm back to feeling low again today They are 10 days old today - here's a pic of them both in the same incubator (we were able to put brother and sister together very briefly)



Max is doing really well - he is off CPAP completely and has been for the last 3 days, his feeds are being increased every day (he's now up to 12 mls an hour), he is a little jaundiced so having phototherapy today but he looks great and is putting on weight - he's up to 5lbs 1oz now.

Hannah is also improving, she is having regular spells off CPAP and seems to be coping with her breathing quite well. The biggest problem now is that they've had to stop her feeds again as she's not tolerating them at all - they started her on half a ml an hour and even that isn't going down. Does anyone have any experience of this? I googled it (big mistake) and loads of scary info about NEC appeared and I've just sat here crying ever since. Our consultant hasn't mentioned NEC, they xrayed her yesterday and couldn't see anything although there was less gas in her bowel than expected. They are going to x ray her again tomorrow.

 

[raquel1980]

Hey raquel,

Congrats on Hannah and Max! They are wonderful weights!

It does sound like Hannah may get a blood tranfusion - my LO Alex was 27+4 and had 2-3 and they were nothing like I expected - they boosted her up so well and no problems, Alex was fine having it done, just a drip in her hand for a few hours, thats it! Haemoglobin levels that are low leave baby feeling tired, Hannah sounds just that and thats probably why she needs more help with breathing and CPAP.

You'll find after a blood transfusion Hannah might really peck up a bit!

The other girls on here have experience with hospital transfers and I have seen members, who arent preemie mums, but do have experience with cleft palettes and club foot! If I find them i will maybe ask them to drop by with advice? xxxx

It really DOES get easier, I promise you that. xxxx

Hi - thanks so much for your message hun, the blood transfusion has seemed to perk her up a bit, she has better colour in her cheeks anyway and is looking quite feisty! Would be great if you could ask some other mum's with experience of cleft palate/club foot to pop over, would really appreciate any advice! x

 

[raquel1980]

Congratulations on the birth of your twins. I never really experienced blood transfusions as I was lucky with the girls. Chloe was only on Cpap for a day and Jaycee was on for 3 days. I know its hard but it does get easier. They make little steps which are huge to prem mummies and you will see it gets better. They are good weights hun.
Where did you end up giving birth to the twins? They wont transfer you back to Mayday unless the babies are strong enough to nearly be going home they dont have an NNU that can cope with anything else. They were going to send my girls there but they couldnt because Jaycee had a long line..

Hi hun, I ended up having them at Lewisham Hospital, the 4th hospital I have spent time in during this pregnancy! They have been great so far although I seem to find that I don't ask questions at the time and then end up coming home, googling things and getting myself into a state. I really need to make sure I don't leave until I've asked everything I'm worried about!

Both Max and Hannah have long lines so hopefully that means we can stay put for a little longer. They are both still in the intensive care nursery anyway so I'm thinking they will at least have to have been downgraded to HDU before moving is even a consideration.

 

[Anna_due Dec]

Both my 27 and 31 weeker stopped and started with feeding and I remember how disappointed we were. Tay would get up to 12 ml and then have to start over. Its pretty normal for prems, it just sucks.

 

[raquel1980]

Both my 27 and 31 weeker stopped and started with feeding and I remember how disappointed we were. Tay would get up to 12 ml and then have to start over. Its pretty normal for prems, it just sucks.

Thanks hun, that's good to know, she's putting on weight which I suppose is the most important thing. I just feel like I'm falling apart a bit at the moment - people keep saying it's the hormones which I'm sure play a part but I'm also so desperately worried about my babies, need to try and stay as positive as I can for them though. I love them so much already it hurts

 

[nineena]

Hiya hun and many many congrats on your gorgeous lil bubs, wow theyre so cute and such good weights too

Yup as others have said NICU is not a nice journey, its incredibly difficult but somehow as the days go on it does somehow get a lil bit easier and you just somehow find a way to deal with it. Its amazing the range of emotions experienced when our LO's are in hospital coz we just want them to be home with us and as you said it's so horrible seeing their little faces all screw up when theyre having things done to them.

Thats brilliant news about Max tolerating no CPAP and feeds doing very well too. You will probably find a huge difference after blood transfusion with Hannah, Ella had one when she was about 6wks old and omg the change in her was amazing, almost all the desats stopped and she actually had colour in her cheeks and the sunken dark eyes that we hadnt noticed were there vanished.

As for the feeding tolerance lots and lots of preemies have difficulties with this, Ella was on and off milk sooooo many times with poor tolerance but also coz she has issues with her ability to feed so i know how disheartening it is when they stop the feeds but it WILL get better and Hannah will be taking feeds well before you know it.

As for the hospital transfers Ella was sort of between 2 hospitals throughout her NICU stay, she'd be transferred to Manchester whenever there were surgical needs and stayed at Wigan when she was recovering but in the end mcr got fed up of her being sent back n forth like a yoyo.....she was tranferred about 6 times in total......so they kept her in mcr til she was ready to be discharged.

Things will get better hun and our bubs are such strong fighters hugs for you all xxx

 

[Anna_due Dec]

Both my 27 and 31 weeker stopped and started with feeding and I remember how disappointed we were. Tay would get up to 12 ml and then have to start over. Its pretty normal for prems, it just sucks.

Thanks hun, that's good to know, she's putting on weight which I suppose is the most important thing. I just feel like I'm falling apart a bit at the moment - people keep saying it's the hormones which I'm sure play a part but I'm also so desperately worried about my babies, need to try and stay as positive as I can for them though. I love them so much already it hurts

It actually makes me really cross when people tell me its hormones when i'm upset about my baby being in the nicu. I have had 3 prems now. I've seen 2 out of 3 with multiple iv's, Tay was ventilated, the first 2 went through the cpap process and we had so many hold ups in getting them home due to feeding issues etc my combined nicu experiences add up to 16 and a half weeks SO FAR and then you get remotely upset and people tell you its hormones as though you don't actually have a genuine reason to be sad regardless. What's with that?!?

 

[xgem27x]

Congrats on your twins, my boys were born at 31+6 weeks and were on CPAP for a while, but they got better quickly! I can't really comment on Hannah's other symptoms, but I'm sure their are lots of people on BnB that have dealt with cleft pallettes and club foot to talk to! Really hope your twins get better soon, the time in SCBU is a really hard time to begin with, but as your babies get better, you will start to feel happier about things and can then start counting down the days until you can bring your twins home! And then thats when the fun really begins ;P xxxx

 

[vermeil]

Hello Raquel!

Just to put your mind at ease - blood transfusions are routine for these little guys. Just think of it as them outgrowing their own blood supply - they're growing so fast they can't make the stuff fast enough!

My own baby received an emergency transfusion when only a few hours old. I only found out after the fact. Then one pretty much every day for the first 10 days. Then a few after that. Sometimes only platelets when his immune system was too weak. Sometimes only plasma. Sometimes err other blood components I can't remember now. They'll monitor her blood pressure constantly during the process to ensure her total volume stays ok. All big hospitals have specialized labs or a dedicated blood center that can prepare whatever your little girl needs within the hour

As for feeding, that's also very normal. My own 27weeker was born with the weight of a 23 weeker due to IUGR. They didn't even try to feed him for almost a month, kept his stomach drained with a pump at all time (yech). Then they tried 1cc every two hours. That was a disaster, his stomach swelled up the size of a balloon, small blood vessels in his intestines broke and he ended up with a serious blood infection. They stopped feeds for another week. Then they tried again, he tolerated those for 3 days then swelled up again. Feeds stopped again. Another week passed, they tried a third time, got up to 10 ccs, then back down to 2, then slowly back up, then down - well you get the picture Through all this they said he *might* have a *hint* of the *beginning* of NEC. Many preemies get NEC, it's scary yes but treatable, the majority make a full recovery.

Keep strong! It DOES get easier! My own guy has been home two months and there are full days now when I don't even think of those nightmarish first few weeks. I only cry about once a day now,at random moments for no particular reason, down from, well, pretty much all the time

Your twins are beautiful! And they have great weights. They'll be fine *huuuuugs*

 

[Mizze]

Rachel, just wanted to pop in from the Dreamers thread to say and best wishes. Ive seen the picture and your babies are beautiful.

Thinking of you all

Mizze xx

 

[lil-star]

Hey there! I was looking for you
Congrats on your gorgeous babies xxxx they are adorable lil fighters
Eli had two blood transfusions and he perked up nearly immediately after them and even looked pinker, DH jokes he is a vampire now it sounds alot scarier than it is but it really helps them out.
The bad days out weigh the good ones don't they? But remember every bit of good news makes a bad day so much better, I find it very hard to let it out and end up crying my eyes out when I'm alone.
Rather than thinking long term you just need to focus on day by day and don't compare the twins to each other, they are individuals who will grow and thrive at their own pace.
Eli's tummy extended and they took him off all feeds and back on the long line again for about 10 days. They said it was a mild case of NEC (DONT GOOGLE) but as hard as it is, taking them off the feeds and antibiotics is the only way to treat it. Eli was on antibiotics for nearly 3 straight weeks, he would come off one set and have to go back on another.
If you ever need to chat you know where I am (sitting in ICU ) xx

 

[wishingforbub]

Hi Rachel just sending big hugs your way
Your twins are just beautiful! and so nice you got to have a pic of the twon of them together
Stay strong hun. Thinking of you and your little ones. xxxx

 

[nkbapbt]

Congrats first of all!

And second: GOOGLE IS NOT YOUR FRIEND! Please try to stay off it.

I know it's so hard, but I had myself in the worst state after finding out about my son's brain bleed (a Grade IV/the worst kind) that I thought he would either die or be so disabled. Turns out both were extremely wrong.

NEC is scary, but the doctors haven't mentioned it so that's a really good thing.

Please don't forget that preemies are not suppose to be eating yet and their guts are immature and thus sometimes they are not able to handle food. It does really hurt and it's very hard for us parents to go through. But it's much better for them to stop feeding them and wait an little issue out before it becomes a bigger one.

Sometimes they just need to grow a little before they can move on to it. That goes for anything they face in the NICU.

Your babies are beautiful by the way! I love seeing them in the same incubator, that truly does wonders for them too.