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?

@SleepingStandingUp
I'm not yet 23 weeks...that will feel like a milestone I think! Yes, that sounds right. They are monitoring me very closely and a stitch would be the treatment option.

My term baby, who was always going to be okay, was in NICU for 1 week.

OP, I cannot put into words how wonderful I think you are to live through 5 months.
1 week almost killed me

I want to say bless you without being patronising, I can’t, so bless you

@Jonette
I think it's probably one of those situations where it happens to you and you 'cope' by virtue of just being IN it, if you know what I mean? Our family and friends, and the hospital staff all propped us up so much.

She had what's euphemistically referred to in all her medical letters as "a rocky journey" through neonatal care! She had heart surgery 2 weeks after her birth (a valve in the heart is meant to close when baby is born to allow the blood to flow correctly onxe baby is breathing. In some preemies it doesn't and they need surgery).

She was on a ventilator until 12 weeks, then various breathing supports, and she came home on oxygen via little prongs up her nose.

She was fed through a tube into her tummy until about 36 weeks gestation (so like 13 weeks old) when she started to breastfeed, and she was gradually weaned off the tube feeds. She had several blood transfusions in the first few weeks because they were taking so much blood out of her to check her breathing via blood gases.

She had injections into her eyes to try to prevent an eye condition called 'retinopathy of prematurity', but unfortunately they didn't work so she had eye surgery a few weeks after her due date.

She's done amazing to get off o2 support and tubes op (can she chat to my 4 yo...)

*tube feeds

@MyNameIsRachel that is really kind and I don't feel patronised!

I think any experience in NICU is a million miles away from what most of us expect and hope for. And so any length of stay can be traumatic. It's not about comparing our situation to the family who had it 'worse' than us; it's about acknowledging how different our situation is to the one we wanted, or expected. There's no hierarchy of feeling crappy that our babies didn't get the start to life they deserved.

@SleepingStandingUp - Oh wow, that sounds like it has been a long road!? Was your 4yo 'just' early or have there been lots of medical complications etc?

Wow @whichbearisbest you're bloody brilliant. I don't know how preemie parents cope. Wishing you all the best for your pregnancy

Did you find it hard to bond? I had my eldest at a similar gestation and by the time I brought her home it almost felt like I hadn't had a baby at all. I had dreadful PND for a long time afterwards (she's now 14 years old and I love the bones of her but that first year was difficult)

@whichbearisbest he was only 5 weeks early, but born with a congenital diaphragmatic hernia so would have been poorly at term regardless x

Thanks for the response OP, I can't even begin to imagine how tiny your DD would have been at that weight. I did get to see them quite early on (3 days), not sure what normal rules about extended family visiting are but my aunt (mum of the twins) was a paediatric doctor at the hospital they were in, and my other aunt was a nurse outing on the unit so I was probably allowed in before others might have been.

In regards to your questions: yes it was odd. I'd seen premature babies before but never that early. They didn't look like "normal" newborns even until they were about 6 months old. I found the skinny limbs especially strange, as their older brother born 18 months before was a comparatively huge 10lb baby (and at the time I didn't have contact with many babies).

My cousins were both very small (obviously!) for the first 10 years of their lives, but followed family tradition and grew hugely at 11 and again massively at 15 to the point they are now on the taller side of average (boy only slightly shorter than older brother). Even their mum never really expected them to "catch up" given how small they were to begin with.

Hi OP I'm not sure if you know, but there's a Facebook group for women who've experienced incompetent cervix, if that would help you.
My last 3 were born very early so your experiences ring many bells for me.

Thanks you for starting this thread - it's fascinating, and you write v articulately (and you've done brilliantly getting through that long journey).

The statistics on outcomes for preemies seem depressing reading in terms of disability, but anecdotally the outcomes sound much more positive. It must have been a tough decision at her birth. My view is that it's brilliant that outcomes are improving, but government funding for children needing support once they reach school age is ludicrously low - if we make the deduction as a country to save premature babies (which we should), we should also support them into adulthood.

Did you happen to give birth in a hospital with specialist facilities, or were you transferred? How much warning did you get that labour was on its way?

@SabrinaTheTeenageBitch - Oh my goodness, I'm so sorry you had such a rough start. So much about NICU can make it extremely difficult to bond, can't it? Having to ask permission to touch your baby;
watching them suffer and being completely unable to do anything for them...it's all so disempowering. And then when they do come home it's rare that you get to just sit and snuggle and enjoy them - your mind is filled with medications and appointments and whether they are going to die the moment you stop watching them breathe at night.

I did find that we bonded well, but I experienced a lot of anxiety and friends remember how uptight and stressed I was for the first few months at home. I didn't realise it at the time - I think a chronic state of stress and high alert had become my 'normal', if that makes sense...? What was it that helped you make your way out of PND, do you think?

@beeyourself thank you, I'll look into that.

No question but I just wanted to say hi as another mum who had micro preemie babies, my ds1 was born at 26 weeks, my ds2 at 24 weeks to the day.
I'm so glad to read your dd is doing so well

@Bovneydazzlers I agree with you that the number of very early babies doing well now does feel at odds with what the research suggests should be expected. Maybe a combination of reporting bias and published research being a couple of years behind developments in care? Including my daughter, I can think of nine 23-weekers born within the last 5 years who I know / knew, including two sets of twins. Of that cohort, four sadly have died, three have very significant disabilities, and two appear to be developing in line with peer norms. I think the 'statistics' would suggest that as a group they've done much better than one might expect.

I almost gave birth at my local hospital (I called 111 when I felt my waters bulging at home - I hadn't realised that's what it was otherwise obviously it would have been 999 - and they directed me there as it's geographically closest). They really weren't equipped to cope with a birth at that gestation and thankfully they decided to transfer me by ambulance to the big centre nearby. I remember the poor midwife who'd drawn the short straw in accompanying me I in the ambulance almost crying with relief when I was wheeled away from her at the other end!

Such a great thread, my son was born at 28+3 but only weighing 1lb 10oz. Nicu is hell on earth but yet like being in a bubble where nothing outside the hospital doors matter. I can still remember the smells, the entrance of the unit, where he was on the unit, the nurses faces, the continuous beeps.
I spotted one of the nurses years later on a day out to a soft play and it was like seeing a ghost, the world stood still for a few seconds as recognition hit me! So strange!
It's all etched on my brain forever.
I sympathize with everyone that's been through this. It certainly makes us stronger.

My son isn't unscathed by it, he's 10 and struggles in many areas, in my experience as they grow up the differences become noticeable. He's a smashing boy though. So lovely and kind and spirited.

I was told 23 weeks if they were a certain weight. I also have an incompetent cervix but unfortunately didn’t get past 20 weeks

I did spend some time in nicu with his older brother though. I’m glad your dd is doing well

@whichbearisbest

Thank you for the kind words. Medication is what helped me out of PND eventually, unfortunately it was the only option for me. My daughter didn't escape premature birth unscathed sadly, she has cerebral palsy and is autistic as well so the first few years of her life was just constant appointments and medical intervention. None of the 'nice' stuff like first steps, talking etc. It seemed like such a slog at the time but I can look back on it with fresh eyes now and although I do wish I had dealt with it better I was a young mum and the mature me can see things that I couldn't then.

Having said that it's not all doom and gloom, she's 14 now and an absolute joy. I went on to have her younger sister who thankfully wasn't prem and life is good now :)

*@littlepeaegg - so wonderful to hear about your DS. I feel like somebody once told me that it takes up to the age of 7 for preemie lung tissue to 'catch up' with peers; I wonder if you'll see a difference this year? Was he on a ventilator for a long time?

Please tell me some more about highly sensitive / sensory processing stuff from your perspective...? Did you read what I wrote above about my daughter's reactions to beeping stuff? It has at times crossed my mind that there might be something more to it.*

Oh fingers crossed as he really does suffer with his lungs! It's not nice. He was on a ventilator for nearly a week. Then CPAP for a while too!

The labour was totally spontaneous, I just thought it was braxton hicks! Very scary.

Yes I did read that. My son hates loud noises; especially beeping!! Hand dryers, motorbikes, if we are in a crowded place.

He also hates labels, seams in clothes. Has to wear a vest under everything. Socks have to inside out!!

We thought he was perhaps on the spectrum, so we saw someone and he was diagnosed with SPD, but they weren't sure on ASD. They said to come back when he was older but we haven't as he's coping really well at his new school, it's private so small classes which really help! If he finds life difficult then we will go back again to see if anything has changed! X

@BusterGonad it's amazing how clearly it stays in your memory. Do you feel able to say a bit more about how your son's difficulties made themselves visible? Have you guys / he gotten extra support at school or whatever?

@SabrinaTheTeenageBitch I just can't imagine.

I knew that cerebral palsy was a common outcome for the very little ones; forgive my ignorance - can autism also be associated with prem birth?

I think I would really struggle to see those sorts of difficulties emerging. Autism runs in the men in DH's family and I am fearful of not being enough as a mum if I have an autistic child.

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