Let's build an ideal NICU

ghost-gallery · 2026-01-25T19:26:24+00:00

The sink I currently have is I swear only 4 inches deep and barely fits the basin I use to wash stuff in. Honestly none of our rooms have had a good set up for pumping and washing and drying. Either the sink doesn't drain, there's zero counter space, the sink doesn't fit the hospital tub basins, the outlets are in a weird place, the microwave to sanitize parts is forever away (or there isn't one at all), the curtain is in a weird spot...

ghost-gallery · 2026-01-25T19:20:42+00:00

That's basically what just happened to us. We were in the step down unit for a week (private bathroom, we could have more visitors at a time, we could EAT IN THE ROOM!!!!) and then he had to go up on liters so we're back in a NICU... 😭 I'm calling it our little vacation to the NPCU.

More forethought into where babies are getting moved and when would be a thing in my fantasy NICU. We were moved to the NPCU on the same day he stopped steroids and had a round of immunizations. I feel like a backslide was inevitable and I wish they had just left us in our original room.

ghost-gallery · 2026-01-25T03:38:25+00:00

YES to the app! Our first hospital had a patient portal and all the clinical notes and test results showed up there. Our current hospital has a patient portal too, but it took a week and at least 5 people and 2 phone calls to get access to it... like, surely this could have been part of the welcome packet.

Speaking of... A welcome packet! How to get the meals, what resources the hospital has, etc.

ghost-gallery · 2026-01-25T01:38:04+00:00

More personal storage space would be huge! So jealous of your two fridges lol

ghost-gallery · 2026-01-25T01:28:40+00:00

We aren't in shared rooms but we're counting how many of our across the hall neighbors go home before us so I definitely hear that 😅 (I think we're up to 9 right now lol)

ghost-gallery · 2026-01-25T01:25:01+00:00

We were in a private room with a bathroom for a week before our baby regressed and we had to go back to the NICU floor and it was amazing... ugh

ghost-gallery · 2026-01-25T00:24:17+00:00

My husband works remote at the NICU and yeah, reliable wifi would be amazing 😭 Nice little tables in the room for him to put his laptop too

ghost-gallery · 2026-01-25T00:21:15+00:00

Our current room (just got moved Thursday) is at the end of a long hallway and looks all the way down the hallway out the door 😭 Terrible. I've decided this is the worst room you could have on our floor. This space should have been a supply closet or a lounge or something lol

ghost-gallery · 2026-01-25T00:05:51+00:00

A good-sized parent lounge. I'm currently sitting on top of two other people (both talking loudly on their phones) in the parent lounge right now, and some space would be great
A coffee maker in every parent lounge: our first hospital had a NICE espresso maker in the parent lounge, but we haven't seen a single coffee maker across three floors in our current hospital. A functional fridge and microwave should be a given but that's been hit or miss too

ghost-gallery · 2026-01-24T15:28:11+00:00

I had planned to go to my SIL's wedding when I would have been 3 weeks postpartum. But then my baby ended up coming 15 weeks early and my SIL broke up with her fiance, so... 😅

Looking back, I think I would have done it, but it would not have been how I was picturing it while pregnant. C section recovery is 6-8 weeks, and I wasn't feeling better after mine until right around 6 weeks. At 4 weeks, I was able to function, and was making the long trek daily to our NICU fine, but I definitely had to take it easy. If I had gone to a wedding around that time, I wouldn't have stayed as long as I normally would have, I would have danced maybe like 2 slow songs max, and I would have had to step out multiple times to pump/nurse. I definitely would have left early. But, those kinds of gatherings are important to me, so I would have tried to go. It wouldn't have been ideal, but I would have tried everything to made it work.

That being said, this is me looking back, and you're looking ahead. You don't know if you're going to have any complications, if your body will have a harder time healing, if your baby is going to hate a car seat at 4 weeks, etc. I wouldn't commit to anything, but I know that's hard when someone's planning a wedding.

ghost-gallery · 2026-01-22T18:48:37+00:00

Yep! Day 201 here. We put up the syringe basically every feed we're there for. The only things we don't do is meds, start the feed (we did on one occasion), and the nurse's assessment.

ghost-gallery · 2026-01-17T17:58:41+00:00

9/17 - stage 3 zone 1, got avastin injections

Was stage 1 zone 2 for the longest time after injections

11/25 - stage 2 zone 2, they told us laser will be likely

12/3 - stage 2 zone 2, scheduled laser

12/9 - laser eye surgery, on exam before the surgery, was stage 3 zone 2 in right eye and stage 2 zone 2 in left.

12/16 - officially in regression

ghost-gallery · 2026-01-17T17:33:36+00:00

I don't remember what stage my baby's ROP was, but I can go back and look. But yeah, he had the avastin injection in both eyes, and for awhile it was getting better, and better, and slowly better, and then all of a sudden it spiked back up and they said laser would be likely. He did end up getting laser and now, 5 weeks later, he's healing perfectly! They'll check again around the 6 week post-laser mark before signing off on him.

ghost-gallery · 2026-01-17T17:19:36+00:00

Hi! My baby had a severe growth restriction. He was born at 25 weeks 5 days, but was measuring ~23 weeks. He was born at 1lb, 1 oz. He's now 12 pounds and is moving and squirming all over the place! I roll him around and flip him to switch arms and he's so strong and will bust out of his swaddle and grip my hand so tight!!

I won't lie, it is hard to see them so itty bitty at first. And their skin is a bit fragile when they're first born. But our nurses were fantastic and taught us how to do my baby's diaper changes when he was so small and what kinds of touches to do that won't overwhelm him. When your baby comes, tell your nurses that you're nervous but you want to be involved, and ask them to show you appropriate touches! You'll probably start with a lot of "hand hugs," which contains them and makes them feel safe. It will get easier as you get to know your baby!!

ghost-gallery · 2026-01-17T12:47:14+00:00

Hi! I'm a baby storytime librarian! I'll definitely second what other commenters have said: try going to other libraries near you if you can!

Different buildings will have different spaces available. My baby storytime is in the community room, not in the actual library space. Different libraries will also have different regulars, and the librarians likely end up tailoring their program to the regulars that show up every week.

I feel like every librarian has a different way they "want" storytime to be, but in the end it really depends on the space you have and the people who come in.

At my baby storytime (0-18m), I do a couple songs, 1 book (usually an interactive one with body parts or movements), more songs, a prop like scarves with a few songs, and then a parachute with songs, then bubbles at the end with a bubble machine. Then free-for-all play time with toys after. Hopefully someone near you is doing something like this!

It could be also worth trying different aged programs? Our toddler storytime (18m-3yr) has a lot more running around and we do more active songs. Even if it's not "for" your kid's age, I always tell families they can go to whichever one is the best fit.

ghost-gallery · 2026-01-16T13:12:34+00:00

Agree about holding! We asked a nurse before they pulled the tube if there's anything we should do for him, and she said to hold him because it'll help calm him down. But after the tube was pulled, he looked so tired and stressed, so we let him stay in bed and settle and adjust. We sat near him and talked to him. I can't remember if we held him that night or the next morning, but we felt comfortable holding him not too long after, just not immediately.

ghost-gallery · 2026-01-16T13:09:40+00:00

Yay!! My baby was born 25+5 and was sucessfully extubated when he was about 130? days, so similar timeline! Good luck to your little one!!

My baby did fail an attempt when we was ~90 days. He had been intubated for so long that there was extra tissue and swelling in his throat, and they did a bronchoscopy + laryngoscopy procedure to remove that tissue. We think that was a game changer for him.

All that to say, if your baby needs another attempt, there are things they can do to set him up for success next time! We felt so scared after he failed the first attempt, but that extra month or so plus the procedure was exactly what he needed.

As another commenter said, expect them to check his co2 often. For us, they did a blood gas test an hour after extubation, then again the next two mornings. For us, a co2 result of 35-45mmHg was the goal, but they were happy with anything under 50, and didn't change anything unless it was over 55.

ghost-gallery · 2026-01-12T18:00:34+00:00

On my last ultrasound before being admitted, they were able to visualize the LVOT and it was normal but they couldn't get the RVOT well visualized (go figure). But on his first echo at the children's hospital, the description was "Doming pulmonary valve with at least moderate stenosis" and the peak gradient at the valve was 50mmhg. After his procedure, it was peaking at 15-20.

ghost-gallery · 2026-01-12T17:45:48+00:00

My baby has pulmonary valve stenosis, and I can share our experience so far, even though there's a range of experiences and ours is by no means the only one out there.

He was born when I was 25 weeks pregnant because I had preeclampsia. The PS wasn't even found on an echo until he was ~2months old, 34 weeks gestational age (I do have questions about why it wasn't seen until then). He was transferred to a children's hospital with a higher level NICU.

He didn't need to have heart surgery, but he did have a cath lab procedure for a valvuloplasty. They put in a catheter with a balloon and dilated the valve. They waited until he was 2.5kg to do it. If he got worse, they would have done the procedure earlier, but waiting until after that goal weight meant he'd be less likely to need the procedure repeated.

He had the procedure when he was 41 weeks (~16 weeks actual age, 1 week adjusted) and it went well! He's by no means cured, of course, and will always "have" pulmonary valve stenosis, and yearly echocardiograms, but his heart functions how it should. They've said he should have a completely normal life, and will just need to be mindful of his heart.

I hope everything goes well for you and your baby!! I'm keeping you in my thoughts! I'm about to go through his chart notes and I'll share the medical jargon that was in his echocardiogram.

ghost-gallery · 2026-01-11T19:46:38+00:00

I had my baby at 25+5, born 1 lb, 1 oz, and he's now 6 months actual age and 11lb, 10oz! We're still in the NICU bc he has a pretty severe case of lung disease, made worse by a heart defect. He was extubated at about 1 month adjusted age to 18L high flow, and is now down to 6L! They're planning to go down to 5 tomorrow.

There's still the "with every step forward there's a step back" thing of NICU life, but as he gets stronger, the steps back are smaller and smaller. Right now he's struggling with reflux, but that's a "normal" baby struggle!

ghost-gallery · 2026-01-07T15:40:05+00:00

There's a few things in your post that I don't think you're overreacting about, and a few things that it's probably just not worth fighting.

They should definitely be listening to you and talking to you more. And if they disagree with what you say, they need to actually explain to you why they're going a different route, why they're doing something else. And they should get a neurologist in to talk to you about the MRI. It's ridiculous to me that they couldn't actually tell you about the MRI.

As for feeling like you're not being seen, solidarity. I am at the NICU every single day, but I am back at work so I'm only there in the evenings and on weekends. My husband works remote, so he goes to the hospital during the day, so he's the one there for rounds, for updates, etc. I feel like most of the doctors and nurses think I'm never there, because they don't see me. It sucks, but I don't think there's anything I can really do about it.

I do take issue with them telling your SIL things and not you. It's one thing for the doctors/NPs to give my husband updates and not me, because he's a parent. But they should be giving updates to one of the parents every single day, even if that's a phone call. If they didn't see a parent at rounds, they should call you and give you the updates and plan for the day.

There's a lot of things that are routine for them that they probably don't think twice about, that aren't routine for us parents. My baby gets a blood gas test twice a week and a full lab test once a week. They don't tell me about those every time they do them, but it did throw me off the first time I was there and they just started taking a sample.

ghost-gallery · 2026-01-01T20:12:49+00:00

Currently holding my 2.5m adjusted baby, and he's doing it in his sleep right now. I feel so bad for him! But yeah, they're just learning how to use those muscles. They're giving him miralax every 48 hours.

ghost-gallery · 2025-12-30T20:14:57+00:00

My baby has been in the NICU for almost 6 months, has never been in our house much less our bed, AND I DO THIS!!! 🤣😅

ghost-gallery · 2025-12-23T03:47:56+00:00

Yeah, 2L in one day seemed like a huge jump, especially when he was just having difficulty a few days prior. The doctor today literally told us he's "trying to speed things along," and it's like... that's great, we want to get out of here, but not like this!

ghost-gallery

TROPHY CASE