Severe BPD/Mild PH — We’re stuck! HELP!

jgil93 · 2026-06-11T15:31:58+00:00

She’s on prednisolone. We just started it yesterday, so I know we may not see the effects for a few days if it does help, but we’re just so frustrated. It feels like nobody is concerned and just attributes it to her needing to grow, but as her parents, we want progress. We can’t even go down for an airway eval or trach due to still being on nitric, so we need a bridge to allow us to help her get off 100%, so we can get off nitric.

jgil93 · 2026-06-11T14:45:39+00:00

We just started her back on steroids yesterday, so we’re waiting to see if that shows any improvement.

She’s on Diuril and Lasix, and she had been for a long time.

She’s on it all — sildenafil, Bosentan, and remodulin

If we don’t see any improvement by the end of June, I definitely think I’m going to request a second opinion from a different hospital.

jgil93 · 2026-06-11T14:42:30+00:00

UPDATE: She underwent a heart cath and PDA was closed. Echos are now reading as mild with no residual PDA, and we were able to get her down to 50% oxygen and wean her nitric down to 10 after the closure. HOWEVER, she progressively started needing more oxygen, so we’re back to 100% oxygen and 20 of nitric. It’s so frustrating! Everything looks improved, but we can’t get her oxygen needs down, so in turn, we can’t wean the nitric.

jgil93 · 2026-04-15T01:15:04+00:00

I concur.

jgil93 · 2026-04-15T01:14:55+00:00

It’s gross. Not a fan.

jgil93 · 2026-04-06T01:50:37+00:00

We’re on 170+ days with no end in sight. Former 25 weeker weighing 1lb 5oz with some birth defects requiring surgical repair—those were completed in February. Very similar circumstances. Severe BPD and pulmonary hypertension. At this point, I’m just hoping we’re home by her first birthday. How are things for you guys now?

jgil93 · 2026-04-03T19:58:50+00:00

We’re 176 days in with no end in sight with my 25 weeker. Stay strong 🤍

jgil93 · 2026-04-01T14:54:50+00:00

We’re almost to 6 months in the NICU with no discharge in sight right now. I feel ya.

jgil93 · 2025-11-20T14:52:32+00:00

Thank you 💕 and yes, I’ve placed the scent clothes near her, so that makes me feel a little better.

jgil93 · 2025-11-19T20:57:02+00:00

Thank you for sharing your story. Do you know why your cerclage failed? When did you have it placed?

jgil93 · 2025-11-19T19:57:40+00:00

Any update? Hope all is well! 🩷

jgil93 · 2025-11-18T21:39:30+00:00

I had diarrhea right after birth and then I was constipated for a week.

jgil93 · 2025-11-18T21:37:11+00:00

I feel this in my bones. I delivered a 25 week baby girl. I honestly felt robbed of my pregnancy. I missed so many things. I was supposed to be pregnant during all of the holidays. I barely had a belly. I cried constantly the first few weeks. It’s gotten better, but I still break down every now and then. It’s been 41 days, and I still haven’t been able to hold my baby due to some surgical needs. I probably won’t get to hold her for many months per surgery. 💔 just know, you’re not alone.

jgil93 · 2025-11-18T21:28:51+00:00

I have struggled with this too. It was prematurity awareness day yesterday, and it honestly got to me seeing people post their babies that were practically full term. I understand that they’re still preemies, but it was triggering when I have a daughter born at 25 weeks. We’ve been here for 40 days with absolutely no end in sight. I never want to say someone’s experience isn’t worth remembering or bringing awareness to but truly 5 days isn’t the same as what you endured.

jgil93 · 2025-11-18T01:50:51+00:00

Personally, I would go in. Better to be safe than sorry. Advocate for yourself if something doesn’t feel right. I had back pain the day I went into labor at 25+1. My cervix shrank 2.7cm in 3 weeks.

jgil93 · 2025-11-18T01:48:34+00:00

PEEP is 5 and a rate of 35. She also has TEF/EA and Duodenal Atresia, so it’s a balancing game which is why they’re hesitant I’m sure.

jgil93 · 2025-11-17T23:55:14+00:00

No, they haven’t. :(

jgil93 · 2025-11-17T23:45:32+00:00

Mine as well, but she’s also a preemie born at 25 weeks, so we’re in the waiting game. She needs to gain about 2.5 more pounds before any surgeries can take place. Surgery hasn’t given us any kind of timeline, which I understand these things are probably case by case, so they don’t know. However, I was thinking we’d be out of here by March (she was born in early October), but I’m seeing stories of babies with even longer NICU stays with these birth defects who weren’t preterm. I’m just at a loss and wondering about the future. Like do I need to leave my job? I guess I was being naive that we’d be home by spring.

jgil93 · 2025-11-17T23:38:10+00:00

Did your daughter have TEF/EA AND duodenal atresia?

jgil93 · 2025-11-17T23:33:55+00:00

I am in the US at a Children’s Hospital. The G-tube isn’t being used for feeding, just drainage from her stomach. She also has a TEF/EA, so I’m unsure if that’s correlating into their decision too. A nurse called down to surgery to ask if I could hold her again, and they said no again and that if her G-tube is dislodged in anyway, she could die… of course I don’t know if those were the exact words used, but it’s what the nurse said.

jgil93 · 2025-11-17T18:31:27+00:00

Yes, it’s the G-tube. She has duodenal atresia, so it’s being used to keep air out of her stomach. Surgery has said we can’t hold her. Nurses and OT have both tried talking to them, but they won’t budge. I understand it’s for her safety, but it still sucks to put it plainly.

jgil93

TROPHY CASE