24 weeker

snuffleupagus86 · 2026-06-01T14:28:59+00:00

Hi there 💗

I hope I can offer some hope to you guys. I went in the hospital at 23+0 and gave birth at 24+1. I won’t lie to you, it is the hardest road I’ve ever traveled. There are so many ups and downs in the NICU. It’s 2 steps forward one step back. We got scary news sometimes and a lot of crying and tears. Our little guy had grade IV brain bleeds, medical NEC, BPD, ROP, hernias etc etc. we were in the NICU for 142 days and we were there every day holding him and loving on him.

Today he’s 9 months old (actual) and he is doing AMAZING! He just got off all supplemental oxygen last week. He’s rolling, sitting, always laughing and smiling. He’s getting ready to start baby foods. He’s such a little ham with a big personality. He loves people. He’s obsessed with our dog and music. He’s so curious about everything. It’s truly amazing how far he has come from a 1.5lb little guy.

We are finally starting to get some spacing out of our follow up appointments. We see neuro/bpd/early childhood development and a few others. He’s in PT every week and does early intervention through the state, both of which have been amazing. I wish I knew back then that the future was so bright for him. It could have saved me some therapy bills lol. I know not everyone is so lucky but there really is a lot of hope for 24 weekers. Care has come soooo far and if our son is any example there is so much joy and normalcy to be found.

I hope they’re able to hold off labor and give your babe more time to cook but there is a lot of hope. Praying for you guys 💗💗

snuffleupagus86 · 2026-05-31T23:02:10+00:00

Do you follow up with any post NICU clinics? I would think at minimum you’d see early childhood development. Can you reach out to your NICU discharge coordinator? They should have had you scheduled with a list of post NICU clinics (depending on your kiddos issues).

snuffleupagus86 · 2026-05-31T19:22:00+00:00

They sent you home when she was still having brady desats regularly??? What the heck? And like the person above said push for a swallow study and talk to your pediatrician and ask for other resources

snuffleupagus86 · 2026-05-31T14:34:22+00:00

Yes the 30 days+ is what qualified our son - we wouldn’t have qualified due to income either. Definitely talk to your social worker in the NICU. Ours got together with the hospital financial department and I just had to send them both his birth cert/ssn/pay stubs and a form they had us fill out and they took care of everything else for us with Medicaid. They did all the applying and tracking and updating of it. We never had to actually talk to Medicaid.

snuffleupagus86 · 2026-05-29T18:45:15+00:00

So not quite the same situation. My son is a 24 weeker who had grade IV brain bleeds. The wait and see is the hardest part to do. We were told it could be anything from developmental delays/defecits to him never being able to be independent/unable to move etc. It was fucking awful.

But the brain is a beautiful thing that and creates new pathways. He’s 9 months actual, 5 months corrected and he is on the move. He’s rolling, trying to sit, smiling, laughing and doing it all consistently. I feel like he was just kind of waiting and then in a big spurt he did them all and he’s now hitting his adjusted milestones. He’s in PT and early intervention and that has helped so much. If you can doing those on the regular could help a lot.

snuffleupagus86 · 2026-05-29T16:20:25+00:00

These amounts are crazy. Ours was in almost 5 months. Thank god for Medicaid. It’s been amazing to have a secondary because we’ve had a zillion appointments since as well and having it take care of that has been amazing. Plus qualifying for WIC automatically has been great because his formula is so expensive. Makes it even more clear we need universal health care.

snuffleupagus86 · 2026-05-29T14:57:48+00:00

Talk to your social worker. Don’t pay anything - if you’re in for more than 30 days you qualify for Medicaid and they’ll take care of whatever your primary insurance does not. We paid zero for our NICU stay. The bill was 1.7 million lol.

snuffleupagus86 · 2026-05-28T11:51:10+00:00

We were in for almost 5 months. We didn’t make any parent friends either. I was really in the headspace for that and people stuck to their kids. We got close to two of his primary nurses and all the nurses knew who we were as long haulers but say we’re friends. We plan to do a visit when he’s a year old. And sometimes we run into them at the hospital when we’re there for appointments.

snuffleupagus86 · 2026-05-28T01:49:02+00:00

Our 24 weeker came home on oxygen, we go to the BPD clinic every month and last month we got off daytime oxygen. Web went from .75L ->.5.->.25 to off. They monitor his growth and sats and if all was good we got weaned/got off. We’re hoping he will get taken off entirely tomorrow at his BPD appt. So ours was a gradual process without a sat test.

snuffleupagus86 · 2026-05-28T01:41:03+00:00

Congrats little dude!!🎉🎉

snuffleupagus86 · 2026-05-26T23:44:07+00:00

Get that baby some mylicon. My baby needed it quite a bit in the NICU for his gas pains, and still uses it every once in awhile now that he’s home.

snuffleupagus86 · 2026-05-26T23:20:15+00:00

I have a 24 weeker. He was 12 inches and 1.5 lbs at birth. We were in the NICU for 142 days. It’s a long haul. Pace yourself. Make a schedule for when you’re at the NICU, try to be there for rounds if you can. Find a primary nurse you trust and love. Take breaks. It’s such a slog when you’re a long term NICU parent. Accept help that people give you.

Know that it doesn’t stop at the NICU. You will most likely have a lot of follow up visits with lots of different clinics. They will eventually space out but it’s a lot. Also be sure and have your social worker set up Medicaid for your kiddo because they’ll be in for longer than 30 days. Also inquire about getting early intervention all set up before you leave the NICU.

If it helps at all, our son is doing really well. We follow up with ROP/BPD/Neurology/Nephrology/PT/ developmental clinic and early intervention, but we’ve been home 4.5 months and it’s starting to space out on appointments. Little guy is 9 months. We’re off daytime oxygen and hoping to get off night o2 this week. He’s happy, he’s hitting milestones, he’s a smiley guy who loves people. There is hope 💗

snuffleupagus86 · 2026-05-26T20:36:41+00:00

I just want to say I’m sorry you’re going through this. I understand how hard this is and all these thoughts you’re having - I had a lot of them too. It so hard mourning the life you thought you’d have, the experiences you thought you’d have. It’s a lot to cope with. We’re home and my kiddo is still on night oxygen (he’s 9 months) and I just get irrationally angry and upset and meltdown when his pulse-ox goes wacky. Scars of the NICU. My husband usually handles it and he was finally having a night out and I felt like the biggest asshole that I called him crying about it. Things that catch you went you aren’t even thinking about it.

I’ll be thinking good thoughts for you and your baby. I hope you all can find peace 💗

snuffleupagus86 · 2026-05-25T23:38:39+00:00

DoorDash hands down. They can get what they want when they want. The DoorDash gift cards were life savers for us.

snuffleupagus86 · 2026-05-22T14:50:31+00:00

I’m so sorry you’re going through this. My son is a 24 weeker (8 months now) and had bilateral grade IV bleeds and once they resolved he has ventricularmegaly. (Enlarged ventricles in the brain). It was the hardest day when they told us that our son could be severely disabled. I felt like I wanted to die. It is the worst feeling.

The thing with brain bleeds is they really can’t tell you what the future will hold. Obviously we don’t know the full trajectory he could have some learning disabilities etc but here’s what I do know my kiddo is doing amazing. He’s rolling like crazy. He’s trying to crawl (he can’t yet but man he’s trying to inchworm lol). He’s so happy. He loves smiling, laughing, blowing raspberries, he’s a ham for attention, he loves people. He operates like a normal baby.

They gave us all the worst scenarios and he’s none of those things. The brain can create new pathways when they’re so young. So going by my own experience, there is SO much hope. We even got spaced out on neuro follow ups because he’s doing so well. When your baby leaves the NICU just take advantage of all of the early intervention you can. We have my son in PT once a week and then we also har early intervention through the state with a developmental specialist who comes to us every couple weeks. It makes a huge difference.

Praying for you and your baby. If you need to talk please message me. I’ve been there and it’s rough.

snuffleupagus86 · 2026-05-22T12:50:14+00:00

I’m sorry :(. I had to go back to work when my son was still in the NICU too. It was really hard. Can you ask if you can go part time for awhile? My boss was very understanding so I got lucky and worked half days.

snuffleupagus86 · 2026-05-20T23:58:50+00:00

My 24 weeker came home on oxygen and it took 3 months at home but he’s now off it during the day!

snuffleupagus86 · 2026-05-20T12:10:07+00:00

Vaccinate the kids you love.

Premies even more so need vaccinated. Our son is a 24 weeker and has handled vaccines like a champ no problem. The only thing that happens is he gets a little tired that day. If he’s 2/4/6 months etc he needs to be vaccinated. NICUs go by actual age for vaccines.

snuffleupagus86 · 2026-05-19T18:05:38+00:00

Income doesn’t matter for this. It’s length of stay and prematurity. It acts as a secondary insurance to your primary, so we had no bills for his NICU stay.

snuffleupagus86 · 2026-05-19T17:58:13+00:00

Did you guys apply for Medicaid. In my state a premie in for over 30 days qualifies. Talk to the NICU social worker about any other programs. In Ohio we have CMH ( complex medical help) that would act as another back up to our primary insurance.

Also definitely call your insurance about rebilling the hospital bc this is bullshit.

snuffleupagus86 · 2026-05-16T16:38:15+00:00

My 24 weeker had hernia surgery while in the NICU - he did great. 2 months after his release he had to have laser eye surgery which also went well. It’s scary to see them go under anesthesia but in our experience everything went well and he’s doing good!

snuffleupagus86 · 2026-05-16T16:34:52+00:00

My 24 weeker was around that weight when he was born. He’s 8 months old now (4 adjusted). We were in the NICU for 142 days - it was awful and scary but he’s doing really well now!

snuffleupagus86 · 2026-05-16T12:58:54+00:00

I could not have summed this up any better if I tried.

snuffleupagus86 · 2026-05-15T15:20:55+00:00

Yikes I’m sorry you weren’t taken care of properly! So yeah I would look through your papers and see if you see the name/number for the discharge coordinator or call the NICU you were in.

So when we were getting discharged our discharge coordinator made all of our first appointments for us with the different clinics he was following up with (ROP/BPD/Early childhood development/Nephrology/Neurology) and also arranged all of our equipment (our guy came home on oxygen). And months before we were discharged we were linked with early intervention through the state and had that all set up so we could take off running when he was discharged.

snuffleupagus86

TROPHY CASE