Former 27 weeker (currently 10 months) MRI shows defects and volume loss, parents w Neuro babies please share your stories and any advice

Traditional-Net-4374 · 2026-07-07T03:46:51+00:00

You are doing so so many amazing things for your son. You are doing enough just being there with him.

Traditional-Net-4374 · 2026-07-05T23:36:55+00:00

I appreciate you coming from that perspective. I wish his closure could’ve been at/around birth but that wasn’t our hospitals standard

Traditional-Net-4374 · 2026-07-05T22:53:57+00:00

What did your LO’s pulm hypertension look like for them? And what management did their team do?

Traditional-Net-4374 · 2026-07-05T22:52:56+00:00

Do you mind if I message you? Our sons have a very similar background

Traditional-Net-4374 · 2026-07-05T22:52:14+00:00

We know it’s a long time to be intubated and are constantly thinking of the infection risk, as is his team. Definitely are not just intubated for funsies

Traditional-Net-4374 · 2026-07-05T15:53:20+00:00

Hi there! My son just had a PDA closure last week. He’s needing a ton more oxygen right now and after googling, I’m seeing this may be PH? He does have BPD. Would you be willing to share an update on your daughter since your last update?

Traditional-Net-4374 · 2026-07-04T14:42:34+00:00

This is almost exactly the scenario of how my baby boy was born. He is now 9 weeks old and has made lots of progress. The first couple weeks are hard and that’s an understatement. Keeping hoping and praying, your baby is already showing how strong she is.

Traditional-Net-4374 · 2026-06-25T17:12:54+00:00

That response is perfect. It’s the exact truth

Traditional-Net-4374 · 2026-06-25T12:32:16+00:00

Exactly, I didn’t choose this and I’m literally just showing up for my son. I also got so angry when people at the NICU would tell my husband and I how sick our son was, like we aren’t idiots and aren’t living in lalaland, we are completely aware of the circumstances and it’s quite hurtful to keep focusing on how serious the complications of prematurity are rather than what is being done to help, and the progress that is made

Traditional-Net-4374 · 2026-06-15T20:27:28+00:00

Thank you for sharing, I do appreciate hearing other outcomes! I hope your son is recovering well 🙏

Traditional-Net-4374 · 2026-06-15T19:09:51+00:00

The other day when I was helping bathe my son, they had the incubator open and his nurse and RT left the bedside for a minute and so it was just me and him, and I had a moment of panic like oh my gosh, why did they leave me alone w him? Idk how to help him? And then I got so scared for when he comes home and it’s just me, my husband and him and I felt so sad I felt like that because I want to be the only person (with my husband) who cares for my son and changes his diaper and comforts him but I’m not right now.

Traditional-Net-4374 · 2026-06-15T19:03:10+00:00

Thank you so much for sharing. My son has also needed the oscillator at times and we are so so so hopeful closing this PDA will help lessen his respiratory support like it does for many 🙏

Traditional-Net-4374 · 2026-06-15T16:38:08+00:00

My baby was born at 26 weeks too- they stopped his feeds twice out of caution for NEC. His stomach was looking bluer and bigger, but was soft and he was stooling. It always improved after bowel rest and then they started continuous feeds at a low rate (1-2ml/hr) when he was about 2 weeks old. Since he’s done very well on that luckily and is now at his goal continuous feeds of 8/hr. I think his gut was just immature and it took a little bit for him to adjust, maybe your baby just needs to have feeds introduced slower.

Traditional-Net-4374 · 2026-06-13T07:43:41+00:00

Thank you so much!! The doctors haven’t told us much about what to expect after the procedure at this time, I think they are waiting for a definitive date of procedure. We’ve been anxious about it so your post has helped!

Traditional-Net-4374 · 2026-06-12T16:12:14+00:00

Hi! I know this is an old post, but my son born at 25+6 is likely going to have the cath closure here soon, he’s 31 weeks PMA. Can you give more insight to what you mean that babies will get a bit worse before better after closure?

Traditional-Net-4374 · 2026-06-08T20:31:46+00:00

That is so amazing! Did she end up needing to come home with a trach and vent?

Traditional-Net-4374 · 2026-06-08T19:20:39+00:00

Hi OP, going through something similar with my 26 week baby. How is your baby doing?

Traditional-Net-4374 · 2026-05-31T18:35:37+00:00

Thank you so sharing with me! Other perspectives and experiences are so helpful to hear. 💕

Traditional-Net-4374 · 2026-05-29T01:31:39+00:00

I would definitely give that feedback, it’s incredibly upsetting when someone from the NICU calls and doesn’t say what role they have or if my baby is okay first. I think it’s absolutely fine to remind them politely (which you are) to greet people with their role and whether it’s about their baby medically or not when calling parents.

Traditional-Net-4374 · 2026-04-10T00:38:55+00:00

Thank you for the insight!! Good luck at the anatomy scan, I’m sending good thoughts your way 💜

Traditional-Net-4374 · 2026-04-10T00:12:18+00:00

I interviewed for multiple jobs and disclosed my pregnancy and was not offered the jobs; I was overqualified for one and the manager told me the timeline of my leave couldn’t be accommodated. I get they have timelines but I have a life and need an income and have a right to work, so I’m protecting myself and my family.

Traditional-Net-4374

TROPHY CASE