Day 40 in NICU

[Sam182]

And now I'm starting to struggle again. Alex is now on CPAP after having spent 4 weeks on the vent which required a 10 day dose of dexamethasone. His de-sats are too often for him to move to the next stage. He is currently on around 29-33% O2. I'm really feeling like he is trying so hard but we aren't getting anywhere fast. I suppose with Christmas coming up it's just hard when I know he won't be home. Hopefully he may get home by his due date of Feb 1st if he manages well with feeds once off the machines. He is currently 2lb 11oz and losing weight because of diuretics to remove excess fluid produced by the PDA he has.

I suppose I'm just looking for some words of encouragement as it's getting so tough...

 

[25weeker]

My lo came off the vent at 4 days old and was put back on it at 4 weeks old For 5 days with sepsis so not long really. However they didn't start weaning her off cpap until nearly 34 weeks gestation and within a week she was off it. At one point I was worried she would never come off cpap. After cpap she was on oxygen until 38 weeks.

Holly was on diuretics for about 6 weeks as she had loads of fluid with the sepsis. That's the only time she has ever looked chubby . Diuretics also help them breathe as it dries out the lungs. Holly was treated with indomethacin for her PDA which made it smaller but it remained open until near term.

I think Christmas coming up will make it harder for you. I know it's frustrating but fingers crossed you are about half way through the journey.

Holly came home 2 days before her due date so spent 100 days in total in neonatal.

Xx

 

[EmSmith1980]

Anya was on the vent for 5.5 weeks, then cpap/bipap for 8 weeks, then weaned onto 02 via nasal cannula, which she came home on. It was a long slow process for us. I thought we'd never get there. I was terrified she'd get tired out and we'd take another 2 steps backwards. But she did it. Every gram they put on helps them get that wee bit stronger. Have faith. Keep positive. Anya spent 136 days in the neonatal unit, it was tough going, but worth every single second because we finally got her home.

Christmas was a nightmare last year. 3 kids at home, Anya in hospital, doing the rounds visiting family. I wanted to keep it as "normal" as possible for my other 3 kids but I could have quite happily missed the day out altogether.

Huge hugs to you and baby Alex. xx

 

[Sam182]

Little update from today - Alex has been put onto vapotherm 5.0 pressure

 

[vermeil]

It`s so very hard... Hang in there... having these little miracles requires a LOT of patience and strong resolve from parents. I`d say pig-headedness ha. I remember all too the well the looooong stretches where we felt he was making NO progress, regressing, becoming weaker etc. My little guy was also a 27 weeker, weighing 1lb4oz. He was on vent for weeks, then they tried cpap. He went back to vent 2-3 times. He spent an ETERNITY on cpap at around 35-40% oxygen. It felt like he would NEVER come off that dang thing. I remember them trying to wean him to O2 only. After only 1 hour he seemed to be struggling soooo hard to breathe, his little chest was working so hard - it would break my heart. I`d be the one insisting to the inhalotherapist that he be put back on cpap right away.

Have you been able to try kangaroo care when he`s on cpap? Might be a coincidence but when we started those (when he finally had the minimum weight) we saw a drastic drop in O2 levels in a week - from 65 ish to 30. I like to think he just needed reassurance, a human touch, the warmth of another against him. Those stupid isolettes are so dehumanizing, babies that small (or any baby for that matter) cannot understand or rationalize what's happening, they`re just trying to survive... ok I`m rambling now but you get the point.

It must be hard with the holiday season but do try to keep hope. My little one was home a month after his due date.

 

[Sam182]

Vermeil I just had a look at your photos from 'introduce your VIP' and it brought a tear to my eye! Your boy is just gorgeous! Your story gives me hope - thank you

 

[Agiboma]

Its really hard NICU, its like a rollercoaster one step forward and thee steps back! My son a 25 weeker spent 6 weeks on the vent, in which he came off 3 times and was put back on, my LO also had a pda and we had surgery for it @ 31 weeks gestation. NICU is not easy their is no coping mechanism you can use , you just learn to manage it. My Lo spent 108 days in the hospital and i tell you i was a completly crazy woman by the end of the stay, till this day i am so not over NICU but its getting better and TBH it took a long time for me to even say those words that it does not hurt as much anymore. Try to stay strong momma, where here for you

 

[danielle1987]

my lo was on vapotherm for weeks, its far nicer than cpap you can see their little faces. my lo had to go bk on cpap tho because of equipment failure but his 02 req dropped with the cpap from like 48% to 30% in 12 hours. his lungs were particularly bad tho due to the infection brought on by group b strep. xx

 

[Sam182]

Alex was a little anaemic so they gave him a top up transfusion today which they think will also help his o2 levels. They tried to take his pressure down to 4.5 today which didn't go well but after his transfusion today they will give him another go tomorrow and if it doesn't work they will look at caffeine to help stimulate his breaths.

 

[danielle1987]

Blood transfusions to tend to help. not in every baby, but most. my lo had a top up and his oxygen req went from like 38 down to 36 in 24 hours. hang in there i no it can be tough in the rollercoaster of neonatal unit, we did 102 day with our little man and i no it seems like its never going to end but it will, hang in there xxx

 

[mylittlebud1]

Hang in there girl and be strong!! You can do it. He will get there i promise, its just such a long road for them as there not meant to be here yet.

My daughter is 1 now, born at 27 wks weighed 2lb 8. She still has PDA, they tried to treat in hospital with medication but it didnt work but before that her sats were terrible, having brady's round the clock and after the meds she was soo much better didnt need to go on oxygen at all?! although the PDA is still really big. Have they discussed closing it as i believe that can really help their breathing and oxygen levels???

Sending you the biggest kisses and hugs xxxxxxx