Handhold/advice - full term baby in NICU

[tangobravo]

My baby was born at 39 weeks via section, good weight no obvious issues following delivery. A few hours later had low oxygen reading on the pulse ox and ended up in NICU on high flow. Then on a ventilator to have surfactant, then showed improvement so off that onto low flow, then back onto high flow, and now he's been put onto CPAP. No infection just lots of fluid. I guess I'm looking for other people's experiences of this with a full term baby, where their recovery seems to be up and down, how long were they in etc? I'm really struggling with the not knowing each day whether he'll improve or decline, and the seemingly endless stay in NICU we have ahead of us. Just any experiences and handholds will help I think, thank you

Sorry I have no advice or experience of this but just to say sending you lots of hugs and can imagine how hard this must be.
Di you have any support from family/friebds ?

I had preemies in NICU so a different experience but I know how incredibly surreal it can feel in there. Sending you a big handhold. I hope you get some improvements and stability soon.
In the meantime I’d really recommended looking up Miracle Moon on Instagram. They’ve got loads of support for NICU parents and people sharing their experiences - particularly about full term babies this month: https://www.instagram.com/reel/DFvoCd-I5Pp/?igsh=MTQycHdzYWVoZHl4OQ==

My son was in NICU - normal uncomplicated birth at 39 weeks but noticed abnormal breathing a few hours after birth. He had oxygen and chest X-rays, then antibiotics given by infusion every six hours, then they changed the antibiotic, ‘just in case’ he had sepsis (?!?!). Because of the breathing effort he wasn’t able to suck at first so was tube fed. He was about three times the size of the rest of the babies in there (9lb).

Sending lots of hugs. It is pretty hellish for mums when they’re in NICU, I think it’s one of those things you just have to survive and say ‘this too will pass’ because there’s no way to make it less shit. I felt like I was an inconvenience to the nurses at times, they weren’t keen on me holding him because he was on oxygen, I asked them to call me overnight if he woke up/cried but they didn’t call straight away and when they did and I sprinted down the corridor, I was told bluntly ‘your baby was crying for 45 minutes’. We got ushered out of the ward periodically because the doctors were doing their rounds but it was hard to actually speak to a doctor, and when we did it seemed like the plan changed all the time with no clear reason.

With my son, when he got better it was a really quick improvement - as far as I was aware he was doing the same as before, but then one morning a doctor came in and was like, the plan is ‘normalise!’, they removed the feeding tube, stopped the antibiotics, and we were home by the end of the day (I think even the nurses weren’t expecting it as they suddenly realised that I had never been officially discharged as a patient and had to scramble to get my paperwork together).

When we got home, DS was ‘institutionalised’ by NICU, he woke up every 4 hours on the dot - this did not last long. He also was a very healthy, content, bonded and happy baby (despite me feeling he would have abandonment issues from being in NICU). I feel like I have blacked out a lot of the memories of the time in NICU but DS has no lasting damage.

Have you tried getting in touch with Bliss? My NICU baby was full term but had sepsis so a little bit different to your situation. I'm sure the lovely teams at Bliss might have come across it before? Good luck and congratulations on baby's arrival! You don't mention how long your stay has already been but hoping he is discharged soon.

Not the same experience but similar. Full term baby, 40+2 birth date, but long and tricky delivery. She was taken to SCBU at a couple of hours old. No breathing issues but sepsis, lumbar puncture confirmed infection, tons of antibiotics. She was moved down onto the ward with me on day 5, we were out on day 8. We did have to go back in a week or two later but that was because her belly button didn't heal and got infected too.
It was really hard being separated in that first week. I was with her as much as possible but I also had a terrible birth and needed to lie down a lot and there was nowhere to do that with her.
I did pump to bring my milk in which meant I could establish bf as soon as she was no longer nil by mouth which I'm really grateful for. The NICU feeding support nurse was so helpful with this.
My overall advice is this: However tough this first month or two is, it is a tiny fraction of the time you have together. It's a tough start for both of you but you will look back on it as a mere blip. Concentrate on getting as much sleep as possible (I know, not much), pumping if you want to breastfeed, eating well and make sure you get 5 mins of fresh air every day.
Remember to write down any questions you have as the ward rounds are so quick it can be hard to remember everything when the consultants suddenly breeze by.
Don't forget to use hand cream or your hands will be cracked within a few days from all the washing.
How much support do you have around you? X

Thank you for your kind message. My DH is holding down the fort for our toddler and we have some support from family although they aren't local so it's difficult.

Also: NICU will give him a dummy. Don't fight it even if you're tempted. They do need it for comfort. Mine dropped it by herself at 5 months anyway.

When we got home, DS was ‘institutionalised’ by NICU, he woke up every 4 hours on the dot - this did not last long. He also was a very healthy, content, bonded and happy baby (despite me feeling he would have abandonment issues from being in NICU). I feel like I have blacked out a lot of the memories of the time in NICU but DS has no lasting damage.

Yes, this was very much our experience as well. DD1 was also the best sleeper in our NCT group. The memories I have of that time are quite traumatic and 3.5yrs later, I should probably deal with them - i wish I had asked for some talking therapy or something in the aftermath. Not sure if it's too late now? So if you have a NICU psychologist or therapist on the unit (as some do), worth making contact.

My third baby was born at 37 weeks, normal labour. But as soon as the chord was cut, they noticed he wasn't breathing well.

He was taken off me and brought to SCBU and was put on a CPAP.

We couldn't understand what was happening, it felt like a nightmare.

BUT- CPAPs are great, they make sure the baby is getting enough oxygen.

My pushing stage was too fast apparently and he didn't get the lung squeezing that brings the fluid out. Plus he was a tiny bit 'undercooked' the doctor told me, despite 37 weeks.

He's now a gorgeous healthy boy and super smart. You will get through this xxx

Oh wow thank you so much for all of your messages - I'm so grateful

He was born on Wednesday, I've been discharged now which I think was a difficult milestone as I had to leave hospital without him and it just feels so unknown when he'll be able to leave. They also put me on the hospital breast pump which I think has made me over produce so that's something I'm trying to manage too. The hardest bit is that he seems really agitated by the cpap and is off feeds at the moment and I can't hold him (for the time being) so I just basically sit and watch the nurses try to pacify him when all my instincts are to pick him up and feed him myself.

Some great advice here thank you, and sorry to hear all of your experiences - but happy to hear your positive outcomes for your lovely children!

How long was your baby on CPAP for if you don't mind me asking?

Hi lovely. Congratulations. Both my sons went to SCBU post ELCS for the same reason,poor colour ,low sats . Both born at 38 weeks. . They were both there for 2-3 nights .The youngest had IV antibiotics and I genuinely cannot remember now what treatment the older one had apart from O2 .This was over 25 years ago so I wasn’t discharged until they were , I think it’s because it not a natural delivery they still have excess mucus in the respiratory tract.
I hope your dear baby boy home soon .X