Premature baby weight

[VividGemini]

Hi all,

You might remember me from a previous thread about my baby boy born at 26+5. He's doing so so well but it has indeed been a rollercoaster; he had to have a surgery at 8 days old for a blockage in his tummy, a stoma was formed.

Plan was to go home and have the reversal surgery later but he's had really poor weight gain so it looks like we are going to be in hospital until the reversal surgery at the end of August. We aren't at a local hospital so I'm staying here on site and my husbands at home working and looking after our dog.

He was born at 2lbs but is now at 37+6 only 4lb 4oz. The doctors and dietician keep saying how he's on the 0.4th centile for weight and its upsets me so much - of course he's not growing he doesn't have his full gut to absorb nutrients!

We feel so alone, everyone I meet on the HDU leaves with their baby and now the team are on about transferring to a paedeatric surgical ward before his surgery. It's devastated me as I just imagined we would go home from the SBCU, and it highlights just how long we've been here 😥

He's doing so well in all the other areas, we would be going home in the next couple of weeks if it wasn't for his weight/surgery, I'm so exhausted, emotionally drained and honestly, bored of being here.

Any stories of babies who have had a stoma/poor weight gain? Any tips for surviving a prolonged hospital stay?

My son was a 28 weeker and we had a long and hard nicu stay of 108days with numerous surgery's. Just take one day at a time, try and focus on the positives.
I know it also very hard when they want to move you to a normal ward, we got threatened with that one to but I refused and luckily he came home not long after ( I stormed out of the room as I was so upset that they wanted to move him)
If your on fb a great group is
Parents of preemies uk

www.facebook.com/groups/615509418591662/?ref=share.

Thanks @boymum88 I'll check it out

My son was discharged at 39+2 weighing 3lb 7 the day he left. He was the smallest baby they’d ever discharged at the time (he was born weighing 1lb 8 at 28 weeks).
He eventually reached the 0.4th centile at 18 months. I was so excited I made a cake!
From there on in there was no stopping him. 50th centile by age 7 and now age 14 he’s pushing 6 foot!
I was obsessed by every gram and every ounce for so many years - I wish I’d known then what I know now!
Hope your son starts to pack the weight on soon.

Hey OP, my son was about the same weight at that gestation, but he's now just about caught up at six months and is virtually into the 'right age' clothing. It's such a rough start for all three of you, but he will get there, and so will you.

No advice really, other than accept your pre-prepared rushed sandwich fate! Towards the end of our stay, we had takeout delivered a few times and stayed for the evening so we could get used to looking after him on a night as well (although we did obviously go home!)

I would guess there is a community SCBU nurse- you could ask her if there are any other parents locally who've been through a similar thing who might be up for sharing their contact details and meeting up for a coffee, so you can talk to them about their experience? I find other prem parents are always keen to share stories.

Look after yourselves 💐

How are you getting on @vivid?

@NotMaryWhitehouse

It's taken me so long to reply! He came home on the 1st September after his reversal surgery and is still little in terms of weight (just hit 8lbs), but doing amazingly! He's not on any oxygen and taking all his bottles. I have to say speaking to people on here has made a huge impact on how I feel about his prematurity, its such an amazing little community.

Ha ha! Cold coffees and a lack of replying to things are the mark of a busy parent! 😂

It's wonderful to hear how well your little boy is getting on, well done you, you're obviously doing fantastically well. 👏🏻👏🏻

We are in touch with quite a few families from when our son was born and they are without doubt the parents we feel most connected to. There's something about having been through this experience that really bonds you together. Not least because it's so fantastic watching them all develop and grow up together.

Good luck with everything OP, keep us updated with his progress.

@NotMaryWhitehouse - I know this is an old post but I was just wondering how ye are getting on? I’m going through this with my daughter now. She’s at 36 weeks and not even 3lbs!!! She was born 23+4 weighing just 1lb. They are adjusting feeds and giving tpn but the weight is so slow to come I’m getting really worried!