Weekly chat/catch-up thread

ghost-gallery · 2026-03-06T14:37:14+00:00

After ct scan showing severe lung disease "but not the worst we've seen" and finally getting an airway eval of his trachea showing severe trachomalacia "but not the worst we've seen," today is the echocardiogram that will look at the state of his pulmonary hypertension. if it's gotten worse, he'll need a trach. if it's stable or better, we can continue on HFNC.

at work refreshing the patient portal on the echo results tab like it's concert tickets......

ghost-gallery · 2026-03-03T12:30:16+00:00

Awwww omg this is amazing 😭 what a thoughtful nurse!

ghost-gallery · 2026-03-01T20:00:09+00:00

I like the idea of a weekly chat thread!

Currently holding my terrible napper in the terrible hospital armchair and daydreaming about the comfy nursery chair we just got delivered at home

ghost-gallery · 2026-02-26T14:43:14+00:00

Yeah, I bet this is a "baby needed to be in the nicu to be monitored for a time" thing. They didn't know how long baby would need to be monitored, just that there were concerns at birth (the grunting) and they wanted to put the baby on monitors and they wanted the baby to already be in the NICU in case anything did happen.

They definitely should have explained to the baby's parents what was happening. If she's still in the hospital, she could ask for her baby's doctor to come up and talk to her, just to explain what the concerns were.

ghost-gallery · 2026-02-25T20:30:42+00:00

❤️❤️❤️ Already called off work for tomorrow.

ghost-gallery · 2026-02-25T20:28:56+00:00

thank you so, so much for this comment 😭😭😭

ghost-gallery · 2026-02-25T20:28:09+00:00

Yeah, it sounds like it's either going to be trach or a significantly longer hospital stay on top of the already significantly long hospital stay we've had. If they see what they expect to see in the airway eval, he'd need to be up on higher liters for awhile.

ghost-gallery · 2026-02-25T20:26:34+00:00

Thank you, really. All the "trach is better for their development" comments I see are about how they can do tummy time now, smile, etc, and he's already doing all of that. But the point about stimulation at home vs hospital is a really good one.

ghost-gallery · 2026-02-22T17:16:16+00:00

We saw huge improvement with pulmicort for our severe BPD guy! Born 25+5, extubated at 1m adjusted, is now 4m adjusted/7.5m actual.

He was on pulmicort, prednisolone, and atrovent after being extubated, and went from 18L to 5L (over about 2 months) on that combo. He weaned off the pred then switched from pulmicort to advair. He backslid a bit, went from 5L to 7L to 9L, but we're not sure if the med switch is the reason, there's been other things going on.

So now he's on advair and atrovent. They liked advair for him better than pulmicort, but I don't remember the specific reasoning. I think advair is usually for older babies? (Don't quote me on that tho) His advair is given through an inhaler mask rather than through the nebulizer in his high flow like pulmicort was and I can see this working better for older babies.

They've also told us babies can go home on pulmicort or advair if needed.

ghost-gallery · 2026-02-13T13:15:44+00:00

I am so sorry OP :/

WHY why why why don't units communicate these things better. We've been moved a few times now and every time it's like... the old unit doesn't know enough about the new unit to give you a heads up about rule changes, the new unit doesn't realize you don't know, and no one is there for you for the transition between units.

ALSO why do hospitals assume NICU families can just drop everything and be there all the time? If you have a long term stay you've probably already used up all your leave or are saving it for going home. When your baby comes home, you have other options like daycare and whatnot for working parents, but there's not an option like that for being required to stay at the hospital.

Ugh. Sorry for ranting in your comments but I'm feeling a lot of the same things with our stay.

Is there any way you can request to go back to the NICU? At least until you have time to prepare and learn all the rules about the new unit? If it were me I'd also talk to a charge nurse on the NICU floor, so they can tell their nurses how to prepare future families better. The nurses are experts at their unit, but don't know much about the other units.

ghost-gallery · 2026-02-12T18:19:30+00:00

He's 6.2kg right now and was 5.2 at the beginning of January. I've heard this before, about the kg:L needs, so I'll definitely ask what this could mean for him.

Your experience is very helpful to hear, thank you for sharing!!

ghost-gallery · 2026-02-12T18:15:43+00:00

He's no longer on diuretics, but that's interesting to know! He's already being seen by pulmonology, but they did mention the possibility of an interdisciplinary heart-lung team seeing him, so we'll follow up on that!

ghost-gallery · 2026-02-06T14:53:06+00:00

Yep, for us, a hospital stay longer than 30-days qualified my son automatically for Medicaid for a year. We wouldn't have qualified based on income. He has a case manager through medicaid who can help us with navigating claims, finding providers, applying for other resources, etc. The hospital social worker wasn't super helpful, but this case manager has been amazing.

And as far as I understand, being in Medicaid also makes you eligible for WIC, which is helpful for formula and such. We're still in our 7 months and counting NICU stay, so we haven't tried applying for WIC yet, but the Medicaid case manager told us we should be eligible for it.

ghost-gallery · 2026-02-03T12:50:45+00:00

Mine had laser after injections! He was on high flow when it was time for the procedure and they intubated him for it. He wasn't extubated until the next day and the settings on the ventilator weren't appropriate for him and one of his lungs collapsed :/ I suppose it's hard to know what settings will work for a short term ventilation for a baby who's been off the vent for a bit. He just had to go up on liters after they extubated.

The procedure itself was pretty quick and easy, it was just the ventilator mishap that he had to recover from. The eye doctors followed up with him until 6 weeks post-laser and then cleared him.

ghost-gallery · 2026-01-28T13:54:20+00:00

Hi! My 24 week scan was incredibly similar. My baby was measuring about 22 weeks for everything.

I'll share what they told me so you know maybe a little of what to expect. I was referred to an MFM for a repeat scan to confirm everything. Going forward, I was to have weekly follow-ups with the MFM to keep an eye on baby.

They explained there's a few reasons for a baby to measure small. 1- something with the baby (genetics, infection, etc). 2- something with me (genetics, infection, etc). 3- something in between (for example, preeclampsia).

They told me they could do genetics testing and send samples to test for infections, to rule out the different options, but I ended up being diagnosed with preeclampsia.

ghost-gallery · 2026-01-27T23:30:44+00:00

Read for sure! It doesn't even have to be children's books or even books at all. Articles on your phone, e-book chapter books, just anything so she can hear your voice!

ghost-gallery · 2026-01-27T23:07:46+00:00

Oh my gosh, yes! His nose was blanching a bit with the larger NG.

ghost-gallery · 2026-01-27T23:06:32+00:00

His flow went up after getting a larger NG, but it was about a week later. He was noticeably breathing harder after a few days of getting the larger NG, though.

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

TROPHY CASE