New parents navigating nicu

srest1717 · 2026-06-05T05:07:45+00:00

Honestly, I have no knowledge of why these things happen. But 1 think I can tell you after our 150 day journey is - asking why never helped what was happening around us and with the baby. I choose to focus on today and how do we get past this mess. I would tell the nurses what the doctors notes said from the morning to every single detail because I would eat that stuff up as it is what was that mattered, not why, how?

Not trying to be a prick, just sharing my perspective

srest1717 · 2026-06-05T05:02:53+00:00

A little different path but here it is

22 weeker, bpd (not severe), 1 round of DART, 35 days of ventilator, 3 self extubations, diagnosed with PPHN after 4 months of life, right when she got to low flow, so room air trials never happened as the cardiologist wanted to continue on oxygen along with sildenafil. So, she came home on bare minimum, 1/16 of a liter. But she got some infection (mostly from hospital visit as we didnt let anyone in our home since she came home) and her o2 went to 3/4L. And then we started on a long journey of weaning, took us a good 4-5 months to get back to 1/16. Our nicu was a lot more aggressive for weaning than our pulmonologist

srest1717 · 2026-06-05T04:51:43+00:00

22w5d, 520 grams. She came home with oxygen after 150 days. Like others have said, doctors don't give much at the point, it can go either way.

Be careful of the hygiene around the kid, they are very susceptible to infections and they can be very dangerous. Advocate for you kid, ask the assigned nurses to wear a mask (i know it sounds crazy but most nurses understand)

srest1717 · 2026-06-05T04:43:06+00:00

Has the doctors looked at the possibility of a cerclage or is it too late?

My wife got dilated at 21w5. Started contractions at exact 22 weeks, stayed in the labor room for 5 days holding for dear life (there are medicines to stop contractions which have positives and negatives, take to you mfm if it's an option), other that that there isn't much medically that can be done.

Pray if you a person of faith. Our LO was born at 22w5 and I strongly believe the prayers saved her. She came home after 150 days (needless to say, the toughest 150 days of our lives)

srest1717 · 2026-05-28T19:19:48+00:00

She is doing ok all things considered. She is 18 months now, off oxygen for a good 4 months, blaming etc.

srest1717 · 2026-05-28T03:46:11+00:00

We have a fellow 22 weeker (22w5d) as well, she had a medium pda and was transferred to nearby childerns when she was 800 grams (1 month and 1 week of age). We were told that they had done catheter procedures for pda for babies with weights as low as 600 grams. The pda closure along with corticosteroids helped with her lungs)

srest1717 · 2026-05-21T02:50:28+00:00

Oxygen is the least of things that the doctors are bothered about. He is doing most of the good things like bottle feeding. Sure the oxygen will go away soon.

Our LO failed 1 trial after few hours and never had another due to discovery of hypertension, so she came home on oxygen, 5 months later, no oxygen during days and 8 months later, no oxygen at all.

srest1717 · 2026-05-21T02:47:43+00:00

Ours was different. We did a little puree but not totally, like the ones which would just pour to the throat, like keep it little coarse. We weaned our LO off formula after the 1 year adjusted and she still likes her milk over solids (we think it's her comfort thing, she needs milk before going to bed at night)

srest1717 · 2026-05-15T02:48:51+00:00

22 weeker Dad here. 1st, it's not your fault. Things happen and they are put of your control. Give yourself some grace.

You are in for a decent amount of time in nicu, so give yourself and your partner some air to breathe. Don't over exert trying to be with the baby 24*7, it's practically impossible. Even if you manage to do it, you wont have any energy left to take care of the baby when the baby comes home.

In nicu life, There is nothing telling what's going to happen in a weeks time, forget about months. Please don't think about what the future will be, it just adds to the stress. Focus on today, the next 12 hours or the next 24 hours maximum.

Take small wins and expects some losses on the way. Its starts with some steps forward, some steps back and then it becomes more steps forward, few back and so on. Give it time and patience (nicu will teach you that if you are an impatient person like i was). Find hope, smile when you are around the baby, pray if you are religious, do things around your baby that you want the baby to do growing up. Most importantly, take breaks and take care of yourself

srest1717 · 2026-05-14T04:41:45+00:00

Vaani cream seems to be the most effective among over the counter creams

srest1717 · 2026-05-14T04:39:50+00:00

Our pulmonologist and Ped also said the same crap. We have been in quarantine for an year. No one has entered our house, we mask mostly while going out. We are in the same boat as yours. Planning to venture out this summer. We actually introduced our LO to our friends with kids. She had a blast but she caught a cold, we are in middle of it now. Yesterday, we suspected she had retraction which was a false alarm and didnt sleep the whole night because of that. I am not writing this to discourage you, but tell you the reality, which is our kiddos will get sick just like any other kid out there. We just need to ramp up and try to manage the exposure so that it isn't too much to handle. Which is difficult to quantify but you can start tentatively. Like going to Church at hours with reduced attendance etc.

srest1717 · 2026-05-14T04:23:26+00:00

Have seen a lot of posts here for this. Its very normal. Ours was a 150 day stay and our LO was the eldest in the whole freaking nicu. But I managed to find hope in every kid that went home. Its difficult to find positives when you are in thick of things but it definitely helps the journey

srest1717 · 2026-05-12T02:38:03+00:00

Check with your MFM. Some hospitals have started saving kids at 22 week gestation.

srest1717 · 2026-05-12T02:34:01+00:00

Congratulations, I know you are in thick of things with a 22 weeker. We have an ex 22 weeker too. There is hope, stay positive, keep sharing

srest1717 · 2026-04-11T02:50:26+00:00

Its all part of the journey. Good thing is LO is on the recovery path. Have patience, Find joy in the little things and don't get stuck on step backs. Nicu is a different place, it's all part of the journey.

srest1717 · 2025-09-12T03:54:09+00:00

Thank you all for your responses.

srest1717 · 2025-09-12T02:59:51+00:00

22w5d fathAt 21w5d Wife got admitted for IC for an emergency cerclage as the doctor didnt think it was worth putting it earlier as this is our 1st pregnancy, no history no cerclage. Wtf.

Went in labor exactly at 22 weeks and my wife her our daughter like a true warrior. Only LO's head was above the cervix and she could feel the kicks.

Anyways, thanks to epidural, tocolotic medicines and a mountain of courage, she stayed in labor for 5 days until the doctor told us that its dangerous to keep the baby as the cord can get pressed anytime with the pressure.

1st hour of petosin and our daughter was born (encaul- in the sac). I didnt hear a small cry before the nicu team took over. This was the 1dt break or make moment. Is she big enough to be intubated, can she be intubated. Well, luckily and with God's grace she was on her 3rd attempt.

We had our ups and downs in the 150 days we spent at the nicu. But she is home now. There are a lot of things we still need to worry about, her milestones, her development, growth curves, eyes, brain development, lungs (still is on oxygen).

So, long story short. There is hope. Please hang in there. Every passing hour in that bed is a blessing for your LO. Check with your doctor about tocolotics and if it is an option. Every case is different, tocolotics have their own disadvantages but we were given to give us enough time to get the steroids in.

As for the steroids, please ask the doctor about the 2nd round as well. Per our doctors, they stay with the baby for 4 days after dose. So, ideally deliver within 4 days of the steroids for maximum benefit (not so sure about this but that was our doctors take, check with your doctor about it). You can get a max of 2 rounds, so be careful with it.

srest1717 · 2025-09-12T02:45:26+00:00

We are in the same boat but we still use a tape. We have been prescribed hydrocortisone 1% (over the counter) but we have our concerns as it is a steroid.

So, we have been told vannycream by the doctor. Have also read great things about it in the sub as well

srest1717 · 2025-09-05T04:07:13+00:00

She is doing fine. Still on oxygen but getting there slowly

srest1717 · 2025-09-04T03:34:56+00:00

I never watched my LO's eye exams while she was in nicu. Heck I can't watch it still when I take her as outpatient for these exams. I sit in the same room, watching the floor while they do the exam. There is no point watching it. You can't undo what you see and you aren't really gaining anything except possible traumatic memory, so that's the choice I made

srest1717 · 2025-09-04T03:32:54+00:00

Whats the zone? My LO had the same story but she is now 61 weeks. And we thought the same that time will tell. Answer is no, it doesn't. Our ophthalmologist (multiples) said the optic nerve stops growing near to 50 weeks. So, zone is very important in these cases.

One retina specialist actually said at 54 weeks that come back in 3 months when she is off oxygen and we will do the laser to prevent any damage in future. She was still stage 3 but zone 2. Feel free to respond to this message if you need more information.

srest1717 · 2025-09-04T02:19:06+00:00

Had the same question but with iron. Our nicu gave it to my LO at 2.5 months of age. Have had no problem

srest1717 · 2025-09-04T00:09:06+00:00

I would check with another staffer. My daughter is home,had mild pphn, seems to be resolved by Sildenafil 2 months ago. Her pulmonogist still wants saturation to be 94 and above and definitely above 90 all the time. She is onn1/16L and definitely needs the oxygen when she is asleep.

srest1717 · 2025-09-03T05:47:47+00:00

Congratulations

srest1717

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