I had a really early baby - AMA

[whichbearisbest]

My daughter was born at 23+3 (and survived) - I love to talk about it so wondered if anyone was interested or had questions?

@whichbearisbest I had a great pregnancy, I was very healthy, and didn't get big at all, I was a smug git tbh! Then at my 28 week check up they did the tape measure thing from belly button to pubic bone and I hadn't grown at all (still in size 12 Topshop skinny jeans) then they checked baby's heartbeat and he had Brady cardia. They sent me straight to the hospital and when they did an ultra sound he hadn't grown since 21/22 weeks. It's was an umbilical cord problem, reverse diastolic flow and UGAR. A nightmare. I think now my son has a touch of CP and he's had to have special help at school. We are expats abroad and his school kept him back a year and threatened us with having to pay for an assistant in the class room if we didn't comply. Life has been hard. I won't deny that it isn't. My son is very slim and doesn't appear to have any muscle tone. His teeth are weak and he needs glasses. He's clumsy and goes about things in a strange way, and he's a lefty which doesn't help. He's amazing though. A real sweet boy full of love.

He also struggled to control his emotions, he flies off the handle easily and cries a lot. Emotionally he's a few years behind. He's clever though, reads well above his age, not good at maths, can figure things out well, and is a good judge of character!

@beeyourself "There are higher risks of ASD, ADHD and other learning difficulties in extremely premature babies, but it's not a given."

I 100% agree with this!

For me, the hardest thing to deal with is the constant sticking up for him we have to do, every time he goes to a new school or gets a new teacher we are called in to have a meeting about him, I hate it, I feel like shouting "he could've died" and all they seem to care about is the fact he doesn't fit the box they think he should!
The times I've cried on the way back to the car after meetings at school! The times I've begged doctors to help! You just get used to sticking up for your child, and fighting for them all the time, I sound VERY negative but I'm just being honest. I love him too bits but I'm also realistic to my/our/his struggles.

I'd agree with you @BusterGonad - it can be hard having to fight their corner all the time, from school admissions to SEN (due to delays etc). But it's completely worth it. Only one of my premature babies survived so I feel very lucky to have him.

Sorry to post again but I feel if it helps anyone then I should, I noticed he was different from the start really, he never had routine, wouldn't nap, only slept at night if I held him until he fell a sleep, woke up and wouldn't sleep again unless I was in bed with him. Cried a lot, needed hugging all the time, as he got older the bed time stuff only got worse, I 99% of the time would end up in his bed by morning. The first night he slept through I thought he something terrible had happened and made my husband go check on him. I would take him to baby clubs and he'd be all over the younger kids, treating them like toys. If a child looked at him funny he'd think they wanted to hit him or something. If a child had a football he'd think they were going to chuck it at his face! It's been so hard. He's undiagnosed, has 'nothing' wrong with him so they say. My husband feels differently and he's a teacher who's worded with kids with various learning difficulties. I do feel like I've mothered him too much, but also feel like I've had no other options but to do so. And I will always blame myself for it as much as I know it isn't my fault. My body didn't do it's job. 6 years after having him I was diagnosed with Crohn's disease, could this have been a factor in things?

@beeyourself I'm so sorry to hear that. We are all lucky to have our children survive but it is also so hard to be positive and fight for them all the time. I wouldn't change my son but sometimes I wish life could be easier!

Have you seen the e-learning resource for teachers wrt premature babies? I think that this will help those with issues not severe enough for formal diagnosis pretermbirth.info

What a lovely thread- thanks. My DS was born early, waters broke at 26+6 but he stayed in there waterless for another 2 weeks before making his entrance.

I agree about the feeling during the NICU days - on constant alert and never sleeping properly at home in case you got a call saying he's back on the ventilator- or, of course, worse. I remember feeling 100 x more sensitive to all the mildly thoughtless people in my life (looking at you mum!) and as if I was living in a bubble that no one else understood. If anyone's reading who is going through that journey now- it gets soo much better! I'd say I'm back to full sanity now. Sort of.

DS is only 13mo corrected so I have no proper idea of how affected, if at all, he will be. So lovely to hear your story OP!

OP, I am so grateful you started this thread. Although, I am very grateful that my baby has been doing good so far, I sometimes struggle to explain my feelings to others. Hearing all you ladies talk about your experience makes me realise that my feelings are ok. @bluedoor4 I remember those days of constantly being alert all the time, even when you leave NICU. I was always worried my son would stop breathing if I fell asleep.

@whichbearisbest I just wanted to join the thread to say hello! My DS1 was born at 24 weeks nearly 14 years ago. He has a fascinating range of complex disabilities, which are becoming even more fun now that we’re adding “being a teenager” into the mix but he is just fabulous. PPs are correct regarding autism, ADHD etc in extremely early prems - they weren’t on the expected list of disabilities we were given (verbally) when he was born, but it seems that as earlier babies are starting to survive, ASD and similar disorders do become prevalent in a lot of these babies. When DS1 was born there were no official survival/disability statistics for babies born at 24 weeks and earlier gestation so he was referred to by his doctors as “helping to compile statistics for extremely premature babies”. A slightly random badge of honour I suppose!

I wanted to share with you also that my DS2 was born completely healthy at 38 weeks thanks to two stitches placed at 12 weeks plus progesterone. I hope your current pregnancy is going really well.

Finally, I love your username! Since the day DS1 was born we’ve known him as Bear (not his real name). X

I have a 28 weeker! He was born in 2011 after I went into labour at 22 weeks. They stitched him in and put me on bed rest on amtenatal. The stitch failed 6 weeks later.

He's come out of it extremely well. I am so grateful for that fact. He's meeting expectations at school and is sociable. Interestingly he can't tell the time and has little concept of time in general!