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Original poster

premature baby

50 replies

Candycotton · 12/09/2021 08:23

hi all,

I have held off writing a post on here for a bit but feel ready to now. has anyone got any experience with premature labour? my little boy came into the world 10 days ago at nearly 28 weeks, weighing 2.8 pounds.

brain scans have all come back clear and the hole in his heart has happily now closed. he is currently on CPAP/high flow to help with his breathing. I was feeling really positive and then late last night read a story about a 28 weeker who didnt make it and it's really really hit me and I cant get myself back up.

ridiculous really, but I didnt let the thought he might not come home enter my head as the idea of him being here for my birthday and Christmas was all that was getting me through. I feel totally totally crushed now. A consultant told me to look at it as his risk is not necessarily high, just higher than a baby born nearer or at full term. I took comfort from this at the time but I'm feeling very low again now after reading that story.

does anyone have any experience? and any tips on how to cope?

thank you

OP posts:

VanCleefArpels · 13/09/2021 09:00

Please speak to the nurses when you next visit. They will have dealt with this before

Blueroses99 · 13/09/2021 09:04

Also - the premature birth in my case was due to incompetent cervix. Obviously can’t diagnose over the internet but your story of bleeding/losing your mucous plug is similar to what happened in my first pregnancy and I had never heard of it until someone mentioned it on here.

MedusasBadHairDay · 13/09/2021 09:15

DD was 10 weeks early and 3lb 1oz, now a healthy happy 7yo.

Bliss were really helpful when she was in hospital, they set me and DH up with a counsellor. It's a hugely traumatic experience and you need to go easy on yourself. Just keep putting one foot in front of the other, and one day you'll emerge from it and it all feels very surreal.

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Families

mumjustmum · 13/09/2021 11:28

Of course you've hit a wall, this is something people just never expect to have to cope with.
Like a PP said, speak to the nurses, they deal with this every day. There were probably three days in the 8.5 weeks that I said to my husband "I can't go and see the twins today, I just can't. I can't go to that bloody hospital today", and I wasn't the only mum on the ward who did so.

What you're feeling is very very normal. Talk to the other parents. Be honest with everyone you see at the hospital, as they will be feeling the same.

You'll see other babies in for 'just' jaundice, or 'just' a week, and it will be very natural to feel jealous and frustrated.
One thing I did find helpful is that my husband got four weeks paternity, so he took two weeks at the start, then went back to work, then two weeks when the babies came home.

I hated having to ask to hold my babies, and I could barely see them for all the wires all over them. I could take my (then) one year old into the hospital, but it was a nightmare keeping him entertained, and because of that, there were tons of days that I couldn't hold the twins.

Talk to people at the hospital, and keep talking on here. You sound totally normal.

mumjustmum · 13/09/2021 11:34

Another thing that helped me was that after a few weeks, the nurses took the incubator lid off, so it felt much more like the babies were in a cot rather than an incubator, and all of a sudden I was so much more confident in just picking them up etc.

Also, I wore swatches of material in my bra all the time and then gave them to the babies so they could hopefully smell me near them.

Asda do very good premature baby vests, the poppers were ideal with all the wires. Before you know it, you'll be buying the next size up I promise you x

direct.asda.com/george/baby/premature/D5M3G100C158,default,sc.html

ThatPerfectStorm · 13/09/2021 13:41

Do you have 'vcreate' at your hospital? It's a way of keeping in touch with the baby when you're not there.
You sign up via email and the nurses can send you photos and videos of the baby.
I love sending them and the parents say they love receiving them, especially at bedtime. Seeing their baby settled before bed really helps.

VanCleefArpels · 16/09/2021 07:11

@Candycotton how are you doing?

Lentil63 · 16/09/2021 08:08

I had my elder son at 28 weeks 31 years ago. Care of pre term babies has moved on since then. I struggled to feed him and had to give up attempting to breastfeed much sooner than I would have wanted. It was an extremely stressful, anxious time and I feel for you.
He was late hitting milestones for a while but became a happy, healthy little boy who did exceptionally well at school. He’s now a GP with a lovely wife and beautiful son. I know it’s difficult but try not to worry, I’m sure everything will be ok.

Original poster

Candycotton · 16/09/2021 17:16

he is up on his feeds and still on cpap - hes being a bit if a pickle with holding his breath (apnea I think this is called?) but they have said this is common in premature babies and he is likely to grow out of it. it's not nice to watch though. I just panic myself with the what ifs but I guess you cant think like that. every day as it comes is what I've been told, although it's tough at times!

OP posts:

VanCleefArpels · 16/09/2021 17:41

Great news - keep feeding him up!!

BookFiend4Life · 16/09/2021 18:20

A lot of babies have apnea, not just preemies! It is super common. That is great about his feeds, keep up the great work!

Original poster

Candycotton · 16/09/2021 18:47

yeah, they have to go over and nudge him sometimes to get him to remember to breathe again but thinking about it my one year old does this too - only difference being she remembers to breathe again after about 10/20 seconds and she only really does it if shes in a deep sleep.

thanks for the positive words. I've started having some counselling and anti anxiety medication just to take the edge off as I was starting to have bad panic attacks.

OP posts:

Africa2go · 16/09/2021 19:16

OP very similar experience, twins born at 27+6, both 2lb 6oz. Completely shocked, felt like it was happening to someone else. I didn't have another child (I cant imagine how hard it must be to feel you need to be in 2 places at once ) but we were transferred to another hospital 30 miles away from home so I was allowed to stay in hospital with them. Looking back, not sure this helped because I didnt look after myself, it was overwhelming and I really struggled with leaving the hospital, even for an hour - I had a panic attack in a restaurant 5 mins down the road from the hospital when my husband persuaded me to eat something other than hospital food after about 2 weeks.

Its entirely expected to crash, we have all done it. Please don't beat yourself up.

My babies came home after 61 days. It felt like a lifetime and I often struggled - especially when other babies/parents I'd got to know went home. They had mainly caught up with milestones by their 1st birthday corrected (15 months) and they were signed off completely by the paediatrician at aged 2. They're now 16, got the equivalents of all As at GCSE, normal, happy, grumpy (!) teenagers.

It really helped keeping a diary, just snippets of information (cuddles, feeding etc / comments the Drs had made). It really helped when they were having a bad day (and it is a bit like an emotional rollercoaster) and I could look back at how far they'd come (e.g. I could see on Day 2 they were only have 0.5ml of expressed milk, so when they got to 10ml, even though they were still so little, I could see how much progress they'd made). Please feel free to PM me if you need to talk xx

SomethingNastyInTheBallPool · 16/09/2021 20:12

Hugs, OP. The whole thing is such a shock, it’s no wonder you’re having wobbles. DD was born at 34 weeks, so not super-early, but with multiple health problems. She was in hospital for a month. She’s now a thumping great 7-year-old, full of beans and at the top of the centile chart for height and weight.

We were offered (and accepted) counselling from a clinical psychologist attached to the NICU. If that’s an option for you, it’s worth doing, I think.

@VanCleefArpels Was that St. Mary’s? I found the wall of children there very cheering.

Hugoslavia · 16/09/2021 20:17

No direct experience but one of my friends had one born at 29 weeks and another friend had twins at 30 weeks. All weighed just under 2lbs. All amazing strapping children now with no issues. One of the twins did have to have abdominal surgery after a couple of weeks, but otherwise all fine.

VanCleefArpels · 16/09/2021 23:13

@SomethingNastyInTheBallPool no it wasn’t- must be a “thing” in SCBU’s across the nation!

SomethingNastyInTheBallPool · 16/09/2021 23:15

@VanCleefArpels It must be!

BobsBurgersisthebest · 16/09/2021 23:45

My friend was a 28 week premie (30 years old)
It sounds all positive from what I hear. Please don't read anymore. Your baby is going home with you. ❤

holfr020 · 19/09/2021 22:33

My lo was born in April at 27 weeks, they are also a breath holder (its a behavioural thing with him but has got better) This weekend marks the day he officially spent more time at home then he was in hospital and I cannot believe how quickly is as gone! Wishing you all the best xx

Original poster

Candycotton · 29/10/2021 11:19

have hit a real wall now.

we are at 8 weeks and back at our local hospital but I'm really struggling to keep coming here every day. it's like having the worst day ever every single day and we are now at day 56. he went back to 2 hourly feeds because he has bad reflux and constipation which is causing him to constantly desat.

I feel so awful saying this but I'm struggling to find the motivation to keep getting up and coming here, to basically be told the same thing every day. if I hear the words "hes been doing his dips still" I think I will loose my mind. I think at the beginning I got through on pure adrenaline but now I have hit the point where it's really hard to see the light at the end of the tunnel. the end feels so far away still.

OP posts:

lubeybooby · 29/10/2021 11:56

sounds like possibly medical depression, very common in anyone but especially with hormones and this scary situation you find yourself in

please seek support from gp x

MrsPelligrinoPetrichor · 29/10/2021 11:58

Please see your GP, PND is so common with mums of early babies. I needed lots of support motionally and medically. x

Original poster

Candycotton · 29/10/2021 14:21

it's just difficult, his due date is in 4 weeks and I just dont see it. I miss my daughter who is at home so much too. then I feel guilty on my son because it isnt his fault and he needs me too.

I'm scared I wont ever get over this period of time, I'm starting to feel quite angry towards it all too which I know is irrational because it could of happened to anyone.

I am so grateful he is here and that he is on the whole doing well but it is the toughest thing.

OP posts:

MrsPelligrinoPetrichor · 29/10/2021 14:40

I really would seek help to talk this through with someone trained. I didn't for 10 years and I really wish I'd done so sooner.

For me I hung on until we got ds home and then I went to pieces.

Do not underestimate how tough this is emotionally, have a baby in SCBU is high risk for PND.

Original poster

candycotton · 19/04/2022 18:34

just to update incase anyone comes across this looking for hope - it was a rough road with up and down days. we was in for 88 days in the end. then we were back in for bronchiolitis twice but he is just amazing. now weighs 15 pounds is doing great!

felt quite emotional reading this back actually. I'm so glad I am on the other side now

OP posts:

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