24 weeker 5 months on still in Nicu

[uliya123]

Hi i had my baby girl Safiya in december 2017 at 24 weeks. She has severe CLD .. congenital CMV because of this she has mild hearing loss. She has other things too but dont want to go into too much detail. She was ventilated for 9 weeks and came off with the help of steroids.. she then went to bipap for a couple of weeks and then c pap for about 3 weeks. Shes on vapotherm and she started at 8 litres and shes been weened to 4.5 litres. She was stuck on 5.5 litres for at least a month and is on a lot of oxygen from 50-80% . At the moment she is on 80% of oxygen probably because the docs weened her from 5.0 to 4.0 in a week. But she needs at least a week to cope with going 0.5 down.

She's just stuck on vapotherm and i dont know when and if she will ever come off. I know for definite she will be home on oxygen. I just want some hope shes 5 months today and its just getting too much. This is the first thread I've ever written. I want to know if anyone else has been in the same boat.

Thanks in advance

Hi op, my lo was only a 29 weeker so our journey wasn't quite as long as yours but one of my good friends from the nicu had a 24 weeker. She was due the week before my lo so their adjusted ages are v similar and, although she's still a lot smaller, shes an amazing wee thing; developing incredibly. She spent 5 months in hospital too and was diagnosed with chronic lung disease. She came home on oxygen but came off it at roughly 1 year adjusted. She has heart problems and a bowel condition that may need another operation. Shes just going from strength to strength and is now almost crawling at 11 months adjusted; 14 months actual! Its been a very hard journey for her and her parents, and it continues to be difficult, but it is getting easier and her lo is just amazing; I just well-up when I think of how incredibly well she's done.
What I'm trying to say is that you're not alone. You will get through this and you've alreasy come so far. There will come a day (and it won't be all that long away) when your lo is home with you and life is so mych easier than it us now.
In the mean time be kind to yourself. Try to rest when you can. Speak to a councilor if they offer one and try to make some friends with other mums on the ward; the 3 I made have been such a lifeline, it's just not the same and you cant possibly understand what it's like to have a prem baby if you haven't been through it.
Sending you and your lo lots of love; you've got this. Xxxx

I haven't been through what you are going through so don't really know what to say. Just wanted to send you

Hi there my DS was ventilated for 98 days in total. Then on Bipap cpap and then vapo. Was on vapo for 50 days and suffered several infections etc. He was released from hospital last week and is 6 months old today 10 weeks 3 days corrected. He has CLD silent GORD and osteopenia to name a few and is on 6 drugs a day. Was born 1lb 5oz and today weights 9lb 8 and on the 2nd percentile. On home oxygen but coping well. If you want to ask anything drop a message to [email protected]

And jist like you he got stick of vapo. They weaned too fast so I had to have a meeting to tell them to turn him back to 5 litres. The protocol is for a wean not to take place until baby is stable at 30% oxygen. Well that's what I was told. Eventually worked. However I had to check settings on machines etc as nurses would set the alarms to go off at different levels than spo2 was meant to be at....only to find out they did it to keep machines quiet at night! Xx

Hey thanks for replying guys. After a staggering 228 days in nicu we came home 3 weeks ago on 2 litres of oxygen. She needed steroids to get off the vapoyhertm and docs have said they have never given such high doses. She has palliative care in place in case she doesnt make it as the docs have said she most likely wont. The steroids are working at the moment but they will stop her lungs from growing and that's what she needs really. I'm hoping for a miracle and just glad that I am having these treasured moments with her at home.

Thinking of you! Have you in our thoughts xx