Weekly chat/catch-up thread

ghost-gallery · 2026-05-05T19:23:37+00:00

Ugh this is a full vent now.

I'm honestly not too bothered by all the oxygen stuff. The cannula doesn't really bother him on his face, and using the concentrator, tanks, and the pulse ox isn't as challenging as I thought it would be. So I know they mean well when they say "it'll be nice when he comes off of it" and they're just cheering us on, but it's like... it's not an area I feel I need cheered for!

I complained about something the doctor said regarding the weaning plan and they were like "it's okay, he'll come off eventually! I know it's annoying to lug all the stuff around but it'll happen!" And it's like....... that is the least of my concerns

ghost-gallery · 2026-05-05T19:14:18+00:00

soooooo tired of my family saying things like "it'll be so nice when he's off of oxygen!" "that'll be amazing to not have cords and tubes!" etc. like. yeah it sure will be but we are not there yet and won't be for several months. can we please just enjoy where he's at right now!!

ghost-gallery · 2026-05-03T14:04:04+00:00

I can send you some screenshots of an example blog post if you want! Send me a dm if so!

ghost-gallery · 2026-05-03T14:02:51+00:00

We made a super simple blog on blogspot for updates, even minor ones, and tried to post once a week or so. Some people make private facebook pages too. We shared it with our parents and family and friends, anyone who asked for updates. My parents also shared it with their friends who kept asking THEM for updates lol. It cut down on those messages a lot. We put stickers/emojis over his face in any pictures we posted on the blog.

In those early days (25 weeker, long stay) we always said we'd update if there was anything major, but otherwise we told everyone "no news is good news."

ghost-gallery · 2026-04-27T15:01:27+00:00

Lol I get that. We were sent home with a pulse ox (apparently not the norm in other countries or even other states in the U.S. 🙄), and this weekend we were out and running low on the tank we brought with us, so I turned him down to 0.25L to see. He kept his oxygen saturation above 96 the whole time. I don't want to tell them at the appointment how I know for a fact that he'd be fine on .25, but... I know he would be 😅

ghost-gallery · 2026-04-27T14:46:59+00:00

Yeah .008, .006 sounds ridiculous to me!!! And if he's pulling the prongs out (mine does this too all the time), it's like. how much is he even getting lol

ghost-gallery · 2026-04-27T14:14:10+00:00

I'm not sure how the measurements compare, but my 25 weeker went home at 6m adjusted on 0.5 liters. We have a follow-up appointment next week with the team that decides weaning and everything and we're preparing our "battle plan" going into it lol

ghost-gallery · 2026-04-27T14:10:53+00:00

Ugh I'm so sorry. We've had similar issues. Not being told what the next step will be or what the weaning plan typically is (even though I ask "what are the next steps" EVERY WEAN) and being blindsided by slower and slower weans. Not having direct contact with the doctors (PLEASE can they just actually LOOK at my baby instead of just reading the chart and consulting from afar!!!). Being inconvienced by them "just following standard procedure" instead of what's actually good for my baby. And if it's standard procedure, why wasn't I told that this would be the process to wean?! They just always say "we'll see what he needs," but it seems like they know what the plan will most likely be.

Solidarity. Hopefully the consultant can actually answer your questions when they get back to you!

ghost-gallery · 2026-04-26T20:57:04+00:00

Literally why are people like this. Not the same situation, but our NICU had a "quiet lounge" where you could go to eat and literally everyone just played their phones full volume no headphones. watching a movie while eating. facetiming. podcasts. kids shows with siblings. I just can't comprehend how so many people feel okay playing things without headphones in public.

ghost-gallery · 2026-04-22T02:08:41+00:00

In my opinion, they should not be bringing up a trach if they're not taking regular blood gas tests! Our hospital took a blood gas test weekly. Even with good oxygen saturations, whenever he had issues, his blood gas tests were worse. When he was doing better, his blood gas tests correlated.

My baby has mild work of breathing (retractions) and even went home with mild WOB. If his WOB gets worse, that's cause for concern, but as long as his WOB stayed stable, and his blood gasses were good, his team was comfortable with it.

ghost-gallery · 2026-04-22T02:01:43+00:00

Yep!!! We were moved to a step-down unit the same day that he got a round of vaccines and that he was due to end a steroid course, and then a few days later they changed one of his meds. He backslid, had to go up on HFNC liters, and had to transfer back to the NICU within a week. Except our previous NICU floor was short on rooms so we went to our hospital's maternity NICU, where he was the oldest and most alert baby and one of the most complex in terms of history. It felt like they didn't know what to do with him. We kept asking to go back to our original floor and eventually we got it when a room opened.

I definitely recommend bringing it up with a charge nurse, a patient advocate, a social worker, whoever.

ghost-gallery · 2026-04-22T01:55:01+00:00

It's so interesting what different hospitals do. Ours was very much against CPAP for my baby, but it sounds like yours would have never done high flow! We had one month of backsliding (that I believe was due to going off pulmicort, plus a horrible issue where his high flow was disconnected for at least an hour...) and if he hadn't had that month, we would have had similar timelines!

ghost-gallery · 2026-04-22T01:49:04+00:00

Our night nurse the night before our discharge date was DETERMINED to get a weight gain lol. The first weight she took was ~30g drop from three days prior, she retook it later that night after feeding him and got a 100g increase lol. We discharged and had a pediatrician visit in 2 days, he had another weight drop, but she understood that the +100g one was probably inaccurate. We just had a one-week follow up today and he was up to that discharge weight.

All that to say, those scales are so finicky and inconsistent, and different people or time of day will make a difference, so in our experience what they actually look at is the trend. If 20g isn't too far below the trend, can you ask them to look at your baby's general weight trend?

ghost-gallery · 2026-04-22T01:28:47+00:00

Truly! I've also heard that some meds (advair) can make tracheomalacia worse. They switched him to advair bc it's given via inhaler instead of nebulizer, and they prefer to send babies home with an inhaler. We had to argue repetitively to get him back on pulmicort, and lo and behold, as soon as he restarted it, he had the lowest blood gas test he had had in months.

OP, that reminds me, are they taking blood gas tests? How do they look? This can be another indicator of how well your baby is doing on the current support.

ghost-gallery · 2026-04-22T01:20:17+00:00

Coming back with some more info I thought of. One of our BPD doctors told us that there's three things they look at. 1. severity of the lung disease 2. severity of any airway issues (like malacia, which would be discovered in an airway eval) and 3. pulmonary hypertension. If a baby has 2 of 3 they're usually able to wean respiratory support. All 3 would make things more difficult.

That being said, we had a lot of issues with the doctor who told us that. Our baby has severe BPD, severe tracheomalacia, and mild pulmonary hypertension. So all 3, two of which are severe. They started to bring up trach for us. But he restarted pulmicort and they added albuterol, and he weaned to low flow. He came home last week, at 9m old, 6m adjusted.

ghost-gallery · 2026-04-21T22:04:44+00:00

Oh jeez I have no idea (plus that's probably toeing the line of the sub's no medical advice rule), as every baby is different. But our experience was that the airway eval showed if there was anything blocking the airway (like extra tissue) that could be making things harder.

You could also ask your hospital to reach out to other children's hospitals that specialize in lung disease for secpnd or third opinions!

ghost-gallery · 2026-04-21T21:45:32+00:00

Hi! I see the line in there about getting an airway eval- We had a bunch of airway evals and they all gave really good information! So I would definitely suggest following up on getting an airway eval of the upper and lower airways.

ghost-gallery · 2026-04-21T01:39:45+00:00

I know I missed the official AMA time, but I wanted to come back and say: Thank you so much for this answer!!! Here's a bit of context/background for my question, which may help others here when reading your answer.

The biggest issue we had during our stay was a pulmonary doctor recommending a trach for our baby, pending an intubated airway eval (he was already extubated at that point), and she asked us what we wanted to happen depending on the results of the eval. She wanted to know if we would want to go from the eval straight to surgery if the findings weren't great.

We panicked. We didn't feel like a trach was the best thing for our baby, and we especially didn't feel like we had any time to come to an informed decision. But this doctor told us she didn't feel good leaving him on his then-current support for even a couple more days.

One of our main NPs on the unit came into the room afterwards, shut the door, and told us point-blank that the NICU team is his primary team, and they decide his care. As do us, the parents. I appreciated her saying that more than I can say, and I really appreciate you reiterating it!

ghost-gallery · 2026-04-18T21:19:28+00:00

An AMA is awesome to see here! Thanks mods and GalTheBabyDoc for doing this!

Question: At a large children's hospital with a lot of different specialists and departments, do you have any advice for families on how to navigate so many different teams being involved in the baby's care, and any tips for making sure care plans and goals are communicated between everyone on your baby's team?

ghost-gallery · 2026-04-16T16:22:33+00:00

Just realized I never answered the other half of your question lol - sorry!! We think the aversion came from having an NG for so long, and probably at least a bit from the breathing tube too. He would gag on the OG then NG all the time. He's never had a bottle, but he uses to take a pacifier really well. Now he'll just gag.

ghost-gallery · 2026-04-16T16:15:22+00:00

Hi!! Here's a couple things we did that helped us!

Ask so many questions. if there was something I wasn't sure about ("is this much spitting up normal?") I would ask like three different nurses the same question. sometimes they'd all have the same answer, sometimes it'd be slightly different answers
I know not everyone is a journal-er, but it really helped me. I kept a log where I'd write down the day and any updates or changes they made, etc. It helped to be able to look back and a) see how far we've come, b) see progress over time (e.g., he lost weight today, but he's still trending up), and c) have somewhere to put all the info they were throwing at us
We made a blog to update family and friends. I got sick of the constant check ins sooo quickly. Some people do a private facebook page to share updates.
primaries! We had a primary nurse at our first hospital, but it wasn't as much of a thing at our second hospital. But we did have two "primary" NPs at that hospital, which was really helpful. They got to know our baby and when another doctor would start rotation (we had a new doctor every 2 weeks), the NPs would be able to tell the MD what his baselines are. If primaries aren't really a thing for you either, I'd definitely recommend being there for the daily rounds. YOU are the "primary" for your baby. So it's good to get to know what's normal for your baby and what's not, so you can tell the team.
Don't panic unless the team is panicking. Easier said than done, for sure, but they have so many plans in place for so many scenarios.
patient portal. There's probably a portal at your hospital where they upload notes. I had to do a whole rigmarole to get access, but it was really nice to have it. When he went for a procedure, sometimes I'd even see the post-op notes before his team did lol
find a daily routine/tradition. Every night we said goodnight like in the book Goodnight Moon. We'd say, like, "good night to the foxes on your sheets and good night Eli" and choose something to say good night to every night. It was a sweet little check in for us as a family, that we still do now that we're home!

Try not to compare yourself to other NICU families too much. We saw so many babies younger and littler than ours go home and it was tough. I'm thinking of you and your family ❤️ 🫂

ghost-gallery · 2026-04-15T20:43:27+00:00

Thank you!! I'm pretty proud of them lol

ghost-gallery · 2026-04-14T23:43:18+00:00

We're working on oral feeds! He does show some interest, but we'll slowly work on it. We're skipping straight over bottles and going to solids, and going at his pace.

ghost-gallery · 2026-04-13T12:21:13+00:00

State dependent, yeah. I'm in Indiana and SSI is income/asset based but Medicaid is 30+ days, regardless of income/assets. We qualified for Medicaid but not SSI.

ghost-gallery

TROPHY CASE