Premature baby support thread

[loachy]

i struggle to look at early day photos too.

i think our emotions were all over the place then and mine remind me of the photos of my angel baby too.

[michelle79]

Hi
Debbs- NNU is still a very recent event for you and it will take a while to get over the feelings you have just now. All through about the 1st 2 years of their life I felt incredibly guilty and sad about what had happened (i never blamed myself as such cos I know I didn't do anything wrong and it's just one of those things) but really wished things had been easier for them when they were little. I do still feel sad when I see their early photos but to me it now feels like it happened to some other kids and not mine cos they have just come on so much. DH and I often talk about the early days like trying to feed katie while she went grey and desatted like crazy and how stressful it was but the rawness has gone now. I do still cry if I watch their 1st year videos that many of you have seen on FB and also cry when watching other babies in NNU (and hearing the monitors!) and seeing how their parents are feeling that really brings it back.
I am lucky that apart from you ladies I am still very good friends with the parents of one of the little boys (27 wker) who was in the hospital at the same time and we have supported each other.
((hugs)) Debbs it will get easier. xx

[Debbs]

Thanks Hope and Loachy. Sometimes you just feel a bit alone in it all. I dont really 'know' anyone else who has been in Neo to discuss it with.

Michelle - You sound really level headed about it all and cant wait to get to that stage. Im friendly with someone from Neo but its a new friendship so feel a bit weird about dumping all this stuff on her. Thanks hun .

As cheesy as it all sounds it is easier already by speaking to you guys.

Debbs
xxxxx

[Platinum]

Debbs, we all understand it's something that nobody who hasn't had a baby in NNU can really empathise fully with though. It is still very recent for you, so will take time to accept (just like a traumatic labour can take its toll). I'm not surprised that it was really difficult having your babies transferred to a different hospital separately and without you - I never experienced that but it sounds really hard.

The things I found toughest was not meeting my daughter for about 20 hours after she was born - as I had a general anaesthetic and was not well enough to move - so my DH just took me to an incubator and said 'that's ours'. I had to accept and believe that she was ours, and start to work on caring for her and loving her. It didn't come naturally. However, she would never have known, as by the time she started being aware of her surroundings I was there with her all day, and had grown to love her!

The other difficult memory for me was the struggle to express milk for her - I felt such a failure as she really needed breast milk but I never produced enough to fulfil that basic need of my daughter's. However, she's now strong and healthy and hasn't suffered at all - and I know I did what I could.

It gets easier. My memory of the time in NNU is very positive so I am lucky that I can look back with gratitude and calmness (I expect it's rose-tinted spectacles actually, so I dare say it's equally common just to remember the tough bits!). But I am a good few months on from you. Anyway, there is no harm in putting the past behind you, and concentrating on the present and the future with your two little miracles who are doing so well. I could easily look back and say 'why us?' but instead I choose to look back and think how lucky we were.

Big hugs. Oh, and it totally helps to 'talk' (on the forum) - as you can see, I find any excuse to share my experiences (sorry, everyone!) so I know I am still benefitting and healing. So come and share your feelings any time.

Platinum x

[Debbs]

Thanks hun. I agree, I think I do think why us instead of being more positive about it all. We were bloody lucky really. Their doing so well now. Going to work on that. Think the tiredness makes the emotions worse. Seeing that you have things that play on you helps as well. Its just so easy to torture yourself with stuff isnt it?

Feeling a bit better today as it happens. We had an app with the dietician for Lottie on Fri and they think she has a cows milk protein intolerance. She has had the new milk for only a day and I can see a bit of a difference. She is such a plesant and gorgeous little girl that no-one really believed me there was something wrong. Kept getting told that other babies with this problem were screaming etc. Well . . . mummy is always right!!

Hows everyone else?

Debbs
xxxxx

[sammykins]

quick update: my friend's LO is being transferred to GOSH today. I'm not sure if it's because he is really poorly or because they have more specialists there.
There are pics of him on facebook and he looks like he is doing really well, albeit very tiny.
I'm hoping to catch up with my friend when they arrive in London.

[Platinum]

This thread is a bit quiet - how are all our little and not-so-little ones?

I don’t think I updated on Elizabeth’s 1 year corrected age development check, which was in January. Anyway, it was fine – they were happy with everything apart from noticing that she is hypermobile, so it may take her a bit longer to strengthen her muscles to support her wiggly joints. The physio didn’t seem worried though.

Elizabeth is now almost 16 months old (13.5 corrected), and she is so lovely at the moment! She’s happy and contented (always has been really) and is learning so much. She’s had lots of colds and bugs over the winter, but at last is having a healthy spell, and it makes so much difference! She is eating really well, and I’m almost worried that she could be eating too much. We’ve finally got her onto valved beakers for daytime milk, having tried a couple of times in the past – she was just ready this time. Next we’ll tackle morning and evening bottles. She is drinking a bit more water which is great. She’s still not walking but is getting closer – getting stronger and more confident with cruising and climbing about, so it may not be long. She’s saying a few words – I’m ashamed to say that her favourite word is ‘cake’! She’s signing as well. She’s a real daddy’s girl – in the evenings she looks to the door and says daddy which is cute but tricky if he’s not coming home until after her bedtime!

It’s funny though – I’ve just noticed a change in my attitude to discussing her prematurity. Until recently I have wanted to tell everybody how she was premature, as an excuse eg for her not walking yet, but also just to talk about it. But now I’m starting to get annoyed by how so many people that know us keep saying how amazing it is that she’s ok. Of course she’s ok – she’s been ok for ages! In a way I want to move forward with her as a normal little girl, not a ‘special’ one any longer. Does that sound silly? I am no less proud of how well she’s done – just wish people would focus on now rather than her traumatic start in life. Does anyone else feel the same?

Debbs, how is Lottie now her milk protein allergy has been diagnosed? Has it made a difference? She sounds just like Elizabeth in nature.

Sammykins, how is your friend’s LO? Hoping for good news.

Hope everyone else is doing well. It gets a bit less busy on this thread as they grow up and their prematurity is less of an issue, doesn’t it? Not that I’d wish it on anyone really, but we need some more Verity prems to be born!

Platinum x

[sammykins]

Hey ladies,

Thanks Platinum My friend's little one is still fighting! He was moved to GOSH last week to have surgery on his windpipe as he struggles to breathe on his own. The surgeons removed some scarring and today was D-Day to find out if it was enough. Unfortunately, it wasn't, and the little man now needs to have a tracheostomy, which he will have to keep until he is at least 1 year old.
However, this means that he could probably go home with his parents sooner, so I am hoping all works out well for them.

[Platinum]

Hi Sammykins - thanks for the update. I'm sorry to hear that he's been having problems with his breathing and needing operations - hope the tracheostomy works and he can make more progress towards coming home.

Platinum x

[stephhaff]

Oh Sammykins, your poor friend - at least he's in the best place and great if they can get him home where he belongs, being in hospital for a lengthy stay is so hard on all concerned.

Platinum - I can't believe that your daughter is 16 months already - I remember when you got PG and then the OHSS on the IVF thread. How time flies eh?!

I've been AWOL from Verity since my two came along - due to being in hospital for such a long time. I will read back thru this thread when (if!!!) I get the time....

Mine were born by emergency C section at 32+0, due to Caitlin being extreme IUGR, and the blood flow to her placenta was reducing dramatically. She was 2lb 11, Alexander was 4lb 2. They both spent 10 days in NICU. It's been a tricky start to parenthood, Caitlin picked up a nasty bug during her time in SCBU, which resulted in transfer back to Brighton NICU, which was such a hard step, going backwards. She was really poorly, they tried 6 different antiobiotics over 3 weeks, during which time she was being fed 1ml an hour, it really hit her hard, but she's a feisty one and she struggled on. We got her home about 10 days after her due date and she's making progress now - she's 6lb 4 now. Alexander has had a slightly easier start, being the bigger of the 2, he had an infection but fought it off pretty quick. We got to bring him home fairly early, the SCBU staff took pity on us when Caitlin was transferred back to NICU and to save us travelling between 2 hospitals, they let us take him home a few days earlier than planned.

We're absolutely tired out and struggling to see an end to the continuous feeding, dreaming of when they'll sleep for more than 5 hours at a stretch. It's so hard not to compare ourselves to the rest of our NCT group, but as they are all singletons and none born before 36 weeks, it's no wonder their babies are further along than ours....

I do worry about Caitlin's long term prognosis but the consultant tells me I've got to wait until she's at least 2, before we know the full effects of her growth restriction. She does seem to be developing, I think she's trying to smile and she can hold her head up pretty well now. It's just so strange when people assume she's newborn, and everyone questions whether or not they're twins due to the size discrepancy!

It's so good to read that there is light at the end of the prematurity tunnel - I like the fact that you no longer want to mention Elizabeth's prematurity, Platinum - I'm still at the stage where I need to `justify' their size and lack of `progress'.

Sorry for rambling!

Steph

[stephhaff]

Me again!!

Am I right in thinking that developmentally, I should take their adjusted age into consideration, not their actual age?

Just trying to get rough idea of how long before they might sleep longer at night?!!

S

[michelle79]

Hi
Steph
Yes you use adjusted age. Mine were a minimum of 3mths behind on everything. They 1st slept through the night at 8 weeks corrected but even some term babies don't sleep through for months. I do think that IUGR babies can sometime be a bit more delayed but I know IUGR babies on bliss who are fine and were born earlier than your two so fingers crossed that she'll be fine. I also wouldn't say that 2 is the definite age for catching up. Katie was hardly saying anything at 2 years but 2 years corrected and especially 2.5 she took off. SHe is not advanced in speech but is within the normal realms for her age which is good considering she can't hear properly and is waiting for another hearing test appt. There are 2kgs difference between my two now. They were the same weight bar an ounce at birth and stayed similar til about 7mths and weaning and DS took to it and K didn't. People have asked us if they are twins since then, I mean really do they look 9mths apart!!! Some people are a bit stupid and rude!
Great to hear that Elizabeth is doing well Platinum, I think i was still explaining about prematurity til Katie started walking at 22 mths! The effects of NNNU to lessen over time but coming upto their 3rd birthday I am starting to think about this time 3 years ago!
Sammmykins-sorry to hear you friend's LO is having a tough time, it is usually a case of 1 step forward 2 steps back but they get there.
Michelle x

[stephhaff]

Michelle - thanks for your reply - I'd forgotten all about Bliss, have just been on their website now - ta muchly xx

[Platinum]

Stephhaff, great to hear from you! Haven’t we come a long way? It sounds like you’ve had a really tough time of it, especially with Caitlin struggling to fight a nasty infection so early on. We didn’t have the experience of transfer between different hospitals, as Elizabeth just transferred to lower intensity rooms within the same unit, but it must have been incredibly hard for you to have Caitlin back in intensive care, especially with Alexander doing that much better at the other hospital, and then coming home.

Are yours breast or bottle-fed? One of the unexpected benefits of spending time in special care is often that the babies come home already in a good routine – Elizabeth was on a four-hour routine and was used to settling herself. She was almost exclusively bottle fed by the time she came home though, due to my rubbish milk supply.

I guess it must be so much tougher with two. What are their weights now?

It’s easy to say it but so hard to do – but try not to compare. Our NCT group was one complete disaster zone so we weren’t unusual within our group – out of seven couples three were premature (28, 29 and 32 weeks), five caesareans (four emergency) and five babies in special/intensive care at birth. So in that way we were perhaps ‘lucky’ that we had a support system of a few others in similar situations. But looking back over the past 16 months, different babies in the group had different problems and met milestones at very different times, so I bet if you look back in a few months you will not feel your two are so different after all.

Definitely don’t even think about their actual dates of birth, but only of their corrected age. Even then, don’t be surprised if they are a little slower than ‘average’ – remember that they all progress at different times, and particularly with Caitlin’s IUGR there is every excuse for her taking her time. It is hard, but focus on how proud you are of each of their achievements as individuals, and don’t let any nosy clueless people wind you up.

In terms of Caitlin’s likely size as an adult, I don’t know much about the effects of IUGR (Elizabeth didn’t have this), but I do wonder whether Elizabeth won’t be as tall as she might have been due to her prematurity – we are both tall but she definitely isn’t, at this stage. I know of a little girl born prematurely who is about 3 years old now and is very small, but she is absolutely fine in every other way. I agree with Michelle about not holding out for everything being ‘normal’ at exactly 2 years. The only reason the experts focus on 2 years, is that by then all little ones are so different anyway, that it is by then much less relevant which ones were prem, unless there are still known problems by then. I certainly know Elizabeth is no more than average in her development, by corrected age, and certainly in no hurry – eg not walking at 16.5 months (14m corrected) – but I’m not worried, because I see that she is learning and developing day by day, and she is the cautious type, a real little girl!

As for justifying size and lack of progress, it is only very very recently that I’ve started to feel I no longer need to do this. I was a great one for jumping right in there with the birth story! It’s ok – whatever you feel, or whatever you want to share, is just fine.

Things will get easier, even if it doesn’t seem so at the moment. I remember that just when you get the hang of milk feeding, you start weaning and it all gets tricky again! Meanwhile, feel free to vent or share on here – the twin mummies are amazing, and everyone has been really supportive throughout my journey, and if you ever do get time to read back, it’s astonishing to read some of the things that happened to mums and babies at the start of their journeys, and yet how well they’re doing now.

Remember that you’re doing an amazing job!

Michelle, nice to hear from you – do you still note their due date as well as their actual birthdays? Elizabeth still has two birthdays in my mind! What are your two up to now?

Platinum x

[looey82]

Hi girls,

I'm after a bit of your expert advice please. I don't know if any of you will have read any of my posts but basically I'm having a very problematic pregnancy to say the least. I'm now 26 wks (nearly 27) and have had big problems since 18 weeks when the hospital and ourselves were certain I was going to mc. Up to very recently we've just been trying to prepare ourselves for the worst to happen at any point and after all our difficulties within the last 4.5 yrs ttc, we haven't really even begun to think we might have a take home baby.
Anyway at my last appointment on Thursday, my consultant said he does not expect us to get past 30 weeks- perhaps we might make 32. Obviously no one knows for sure but suddenly, we're a bit overwhelmed. We haven't in any way prepared ourselves as we have just felt things would end badly. I'm still adamant I don't want to buy anything at all or decorate the nursery as I couldn't bear the reminders if we lose baby. But on the otherhand we're suddenly conscious there's a small chance we might be parents within about 3 weeks.
A couple of people have suggested that we should at least make a list or think about what we might need if he come soon. We know it'll be a totally different kettle of fish to the norm and baby will be in NICU. I know most things won't matter as we will have time to buy them if we are lucky enough to bring him home. But my question is this:
Have you got any advice for us about things we should consider now? Things we might need to buy fairly shortly after delivering or things we should or shouldn't expect to happen? Things to bear in mind that perhaps you wish you'd known?
I know that many parents on premature babies have no or little warning so in some ways we're lucky in that we might be able to take advantage of having some notice. Really we couldn't have dreamed of getting even this far with all the problems that have happened so far so for us 30 weeks would be a major achievement. On the otherhand, we don't know how the lack of fluid and bleeding etc will have affected baby and whether he'll be strong enough to make it through. I'm someone who prefers to not allow myself to get too hopeful and to be really realistic as to outcomes. Although 30 weeks seems amazing to us, I'm obviously aware it's really very very early and we haven't even gotten to 27 wks yet!
Thanks so much in advance. xxxx