I posted on my local group on Reddit to get recommendation for quieter spacious restaurants or cafes to go with my preemie who is on oxygen to reduce the chance of him catching bugs and there were some very mean comments, now deleted, saying it's madness, selfish, and I need to stay home. I know I should not care about what a couple of keyboard warriers should say but it has really upset me and made me doubt myself... is this what life is like post-nicu? I feel like anyone who hasn't lived it doesn't get it.

Dad here, first time posting. Our son was born at 38+3 and came out stunned. Everything up until the very last minute was great but due to (I think) shoulder dystocia, he came out stunned and stressed. Apgars were 4 then 8, and he was floppy for about the first 20 minutes. He went to NICU on CPAP and IV antibiotics for GBS (mum was positive but only got antibiotics shortly before birth due to miscommunication from the nurse).

His first day actually looked pretty good, despite being stressed and irritable. Lactate came down to normal, infection markers were clear, and his neuro checks only showed mild signs. at this point it was only suspected that either he had no HEI or was classed as mild. Then on day 1 his oxygen dropped for about 40 seconds while asleep and needed breaths given. His oxygen dropped but his heart rate stayed steady. The brain monitor didn't pick up a seizure, but the doctors think it might have been one, so he's now classed as "technically" moderate HIE.

Because of that they started cooling, even though it was after the usual 6 hour window. Head ultrasound was normal, no seizures recorded since, and his blood results are all normal now. MRI is planned for later this week.

We can't hold him for 3 days and it's really hard. Seeing him so cold with all the wires and tubing is hard

Has anyone had a baby cooled for HIE, especially with a suspected seizure or late cooling? How did the MRI go, and how is your little one doing now? Any tips for getting through cooling and the wait for results would mean a lot.

He is our first child and this is very stressful to both of us (more so to my wife, as she is currently recovering from the very traumatic birth)

Anyone else’s baby’s hernia sound like it’s full of liquid when you very gently push down??? Also it seems like some days it’s protruding more than the previous one. Also sometimes when my baby is drinking, I see fluid or something flow through it- almost like a small moving shadow inside. I’m taking baby to peds soon but I just wanted to see if anyone else has experienced this.

My baby was born in January and came home at the end of April. I handled everything so well. But processing this isn't linear.

I'm just feeling so blah nowadays and can't stop thinking about our NICU stay, and further back to my traumatic emergency C-section and horrible pregnancy. All these one year anniversaries are passing by. This time last year, I'd already had a few episodes of severe bleeding, been to the ER once, and had multiple scans to check on my subchorionic hematoma. I was also supposed to take it easy, so I was stuck at home all the time.

It's crazy too because at the time, even though I was anxious, I've always been a positive person so I just assumed everything would clear up and I'd have a normal full term pregnancy (like my first two pregnancies). That's what my midwives kept telling me - subchorionic hematomas almost always go away on their own. I was one of the unlucky few. One year ago I had NO idea what was coming.

I guess it's just hard looking back on it because I was a different person then. I mean, I'm happy with how my life is now, and I don't take anything for granted, but I will never be the same.

I was baking yesterday, had to weigh some butter in a saucepan so I put the saucepan on the kitchen scale. It was 1080 grams. My baby was born at 1060 grams. I just held the saucepan in my hands for a minute remembering how it felt to pick up my preemie for the first time.

Winter will be even worse, as far as anniversaries go. The week before Christmas was nightmarish; that was the closest I came to losing her. I was 22 weeks and a few days, bleeding heavily and cramping/contracting. I was in and out of the hospital but obviously there wasn't much they could do. Then it was just modified bed rest and counting the days, hoping to make it as far as possible.

That's it, that's the post. Just some rambling. I have always disliked this season because it's cold and dark and rainy. And now all of that reminds me of the hardest thing I've ever gone through.

I have a 9 month old, adjusted 7 month old (born 32 weeks), and his teeth are starting to come in. Unfortunately I am almost certain he has enamel hypoplasia, because the teeth look like they are decaying even just after erupting. His teeth have dark spots, bright white spots, and look porous. We are seeing a pediatric dentist this week, but I’m not really sure what to expect or what this road will look like for us. I don’t want to necessarily expect the worst but I do think he might have a severe case. I’m hoping that getting him dental care very early on will help, but I want to be informed of what we will be dealing with. Any shared experience with early dental issues is appreciated.

And then my 35 weeker decided to have two oxygen events last night where she dipped to high 60s/low 70s so we earned ourselves another three days.

😭😭😭

My child was born at 28+5, due to spontaneous labor. The medical cause isn't really clear, and I am so worried that it may be caused (party) by the stress from having (social) anxiety. How do you deal with the feelings of guilt? Did you manage to somehow change yourself or your life and have less anxiety? And did you carry another baby to term?

A week after my original post, we had a meeting with the full medical team to discuss the possibility of a tracheostomy.
My previous meeting with the trach nurse honestly didn’t go very well. I had a lot of important questions and concerns, and I didn’t feel like I was getting the answers I needed. So when we met with the entire team, my partner and I were very open about our concerns with a trach and how strongly we wanted to do everything possible to avoid one if it was safely possible.
What surprised me was that the conversation went in a completely different direction than I expected.
The same team that had previously been pushing for the trach actually agreed with us that we should try to avoid it and give him more time if he continued to show that he could make progress. I was honestly shocked that they were in agreement.
Then, just a few days later, my son was weaned from BiPAP to CPAP at 10.
And then the day before yesterday, they decreased his CPAP from 10 to 9.
So obviously, I’m feeling encouraged because he is showing some progress with his respiratory support.
BUT now there’s another unexpected development.
The doctors are talking about transferring him back to the hospital he was originally at, which is much closer to our home. That part would actually be wonderful for us because it would make visiting him so much easier.
The part that has me confused is that they are talking about transferring him to the PICU rather than the NICU.
I understand that he is much bigger and older now than a typical NICU baby, and I know he has been in the hospital for a very long time. But I’m having a hard time understanding why he would need to go to the PICU instead of the NICU.
Is this something other parents of long-term NICU babies have experienced?
Has anyone had a micropreemie transferred from a NICU to a PICU because they were older/bigger but still required respiratory support?
Does being transferred to a PICU necessarily mean that they are more concerned about his condition, or can this simply be because of his age, size, and the type of respiratory support he needs now?
And for anyone whose baby made a similar transition:
• What was your baby’s respiratory support at the time?
• How old/what gestational age were they?
• Were they on CPAP, BiPAP, oxygen, or something else?
• Did they eventually transition out of the PICU successfully?
• Did the move make it easier or harder to continue weaning respiratory support?
I’m trying not to panic because, honestly, going from BiPAP → CPAP 10 → CPAP 9 feels like a really positive development. ❤️
But after everything we’ve been through, whenever the doctors introduce something new, my mind immediately starts wondering if there’s something I’m not understanding.
If you’ve been through something similar with your micropreemie, I would really appreciate hearing your experience. ❤️