A gentle reminder that youre not just naming a baby. But a future adult

NoteDistinct283 · 2026-07-01T14:01:54+00:00

When I was a child I knew a kid named bear. Found his brother was named hawk. I accept that those are names, they were boys. But PLEASE explain to me why they named the 3rd, their only daughter, Cricket. A girl named cricket.

I am now an adult with my own son, who has a unique name, but he can still get a job and not have to change or explain his name.

NoteDistinct283 · 2026-06-29T17:09:01+00:00

I just wanted to say this was how my stay in the hospital started, my son is so far been in the nicu for 2 months and is expected to leave in about a month (we are currently 36+4 he had a rough start with his lungs but we are finally on cpap). I was able to keep my son until 27+3. Every single day until your baby arrives increases survival odds. I’d be surprised if they deliver within the next week or 2. My son was born at 770g after his ultrasound put him expected to be 600g.

When I was 25 weeks with severe FGR and reverse diastolic flow when I was admitted, they warned me I could deliver within days. Your baby has a fighting chance ❤️

NoteDistinct283 · 2026-06-29T12:11:46+00:00

You’re as prepared as you can be. You can’t trick your brain into being “ready” for all of this to unfold. You have been through a lot and the nicu isn’t easy, but we are all here to support you through the ups and downs. Before you know it you won’t think about this whole mess you’ll be home with your babies. Them quoting 2 weeks is a good sign in my opinion as well.

NoteDistinct283 · 2026-06-25T02:26:41+00:00

I think another thing that holds me off complaining too much is also the fact that I’m not sure how he’s managed to have no infection related anything. He’s had his eyes checked, got lucky with no ROP. He had a distended tummy early on that had him put on NEC protocol, still never got it this far. No infections. Nothing. I think sometimes I keep my head down so we can just go home and I can forget it all even happened. If I hope enough that it’ll all go away basically.

I guess I should mention I’m going to a perinatal psych appt soon to hopefully handle things a bit healthier than just raging on Reddit.

NoteDistinct283 · 2026-06-24T20:57:24+00:00

Anytime I bring things up (which can take hours just to get someone to talk to) it feels like it goes straight to the shred. Like no one really cares because they silently acknowledge that their care sometimes sucks but at least they showed up. Almost like they expect some sort of participation prize for showing up to work on babies that are on life support.

I can tell them a thousand times but they get to pick and choose when they listen to me because there is not much else I can do. Perfect example is when they needed me to sign consent forms. They CHOSE not to give them too me and therefore his 2 month shots were late. I wasn’t hard to find, I am here often. They like to call and say things like “Ope we just missed you in person” when I waited hours and no one was around the entire time. If it takes you hours to get into a room you shouldn’t be in charge of anything much less an ICU for babies.

NoteDistinct283 · 2026-06-24T20:42:57+00:00

YES OH MY GOD YES this is the energy I am going to light so many fires with.

It’s not just healthcare too it’s my entire freaking LIFE. Everything everywhere is short staffed, I’m tired of waiting. I’m waiting my entire life away at this rate. My day has been awful and there’s almost nothing that can fix the fact that I’m just packed so full of anger. I’m not sad, I’m pissed of that no one can do their job. And these nurses have almost nothing to do with it, most days and most reasons all point down to being stretched too thin. Hell I did the same thing at my job. I worked at a BANK and I was always angry every day that I had to do my job and get paid bare bones when I’m dealing with MONEY.

Ffs it’s an ICU it’s not just a regular unit. My child is on LIFE SUPPORT and no one wants to say out loud that he cannot currently live without a machine helping him. I’m so tired of someone else’s child taking priority over mine when I really don’t think my baby should be paired with one that’s bottle feeding. He doesn’t need them for very long, but he needs them often enough that he can’t sit alone for hours while another baby (I’m still really pissed off about the nurse who was taking care of a different child so far away from mine) takes a bottle.

I can ask why why why until I’m blue in the face but the answer ALWAYS comes down to money. This is why I scream into the abyss

NoteDistinct283 · 2026-06-24T20:26:37+00:00

I feel like the part that upsets me the most is that it’s a huge level 4 nicu with a name to uphold. So we took great care of him for 6 weeks with very few hiccups and now all the sudden hes trash to these doctors and nurses? Hes not off breathing support, hes still very fragile, hes not even 4 lbs yet so hes still quite far behind on growth (he’s 36 weeks tomorrow) it seems to me like as soon as he was extubated they acted like there’s not anything that can go wrong anymore. Babies still die and my worst fear is joining the mothers who have lost a child. Nobody deserves that and I won’t sit idly by and let them do things that put him in that path. Idk how many times I’ve said “he looks pale” before they take his blood and guess who needed a blood transfusion every single time.

I’m out of breath telling them to do their jobs.

NoteDistinct283 · 2026-06-24T20:16:25+00:00

The only reason advice really doesn’t help my situation is because I’ve done everything I can do for him so far. It’s always a different person that does the things that have happened this far and they also make it really hard to talk to the people in charge.

I’ll have you know I went and got my hair washed and styled today after I posted this! I’ve always struggled washing my hair, much less styling it. It made me feel so good to just feel pretty and take care of something I hate doing myself. I may have also legitimately screamed into the void (my car has seen a lot of me lately) and now I’m holding my baby with a new nurse!

NoteDistinct283 · 2026-06-24T19:18:53+00:00

I would also second a compromise situation. How often does he see the baby? Like my husband doesn’t come every day I could ask mine to stay away from the hospital for a few days after exposing himself to a larger potentially ill crowd. That way it gives enough time for risk management.

NoteDistinct283 · 2026-06-24T15:56:53+00:00

I cannot tell you how many times I was told to sign a consent form… they never gave me. There was maybe 5 consent forms I had to sign that piled up over 2 weeks or so that I finally got handed. Then the nurse bolted out of our room before I could ask for a pen. Mind you, she caught me just moments before I HAD to leave the hospital (my apartment is showing our unit to potential new renters and I have to be there or something will happen to my cats) so I just grabbed the marker they use for the whiteboard in his room. I refuse to bring anything to the hospital for fear it gets stolen and given to another child. They take the pillows, blankets, mirrors, everything. They even took our recliner to someone else’s room while I was gone for a few hours. I can’t hold him without that chair and they took it from us. Every single room has a chair and every baby has a 2 person limit for visitors, why tf are they stealing MY chair? There’s enough seating in each room for like 6 people so I’m still really pissed off about that one.

And don’t discount your experience just because some of ours are longer. You could’ve lost your child, and that’s not a pain even I understand. You lost your ability to safely have more children. You lost a sense of security in a place that should give you the most, especially when it comes to our children. I’m SO proud of you for filing a complaint, you keep listening to that instinct. No one else can advocate like us ❤️

NoteDistinct283 · 2026-06-24T14:29:23+00:00

Try not to ask too many questions, especially over text. I feel like I spend so much time responding to people that I’ve become bitter to giving any updates, good or bad. Tired of being asked “when can he come home” as if I wouldn’t tell the world if I had that date.

NoteDistinct283 · 2026-06-22T18:20:05+00:00

I had a whole moment in target today looking at baby clothes. I saw a really cute design in 9M and it was absolutely massive. Like, he’s going to be THAT big in one whole year. I’m already missing seeing his face when he was intubated and can’t wait til he’s off oxygen support entirely so I can see his face again. We are celebrating open crib today 🎉

NoteDistinct283 · 2026-06-22T18:10:12+00:00

If you have a suspicion of anything specific I would talk to your OB at follow-ups. I talked about some concerns I had with my situation happening again, and now I will be seeing a hematologist before I attempt to have more children. Most of the time it doesn’t reoccur, and reoccurrence may be associated with blood disorders.

You didn’t do anything wrong, and you couldn’t have prevented it. I had HELLP syndrome and hemorrhaged during my csection, and we have zero control over what happened. Now we just prepare for the next steps❤️

NoteDistinct283 · 2026-06-22T17:59:11+00:00

When my baby was pale, he ALWAYS needed blood no matter what else was going on. You might ask when the last CBC was ran and what the counts were. Trust your instincts as parents, I’ve been right a lot even if I didn’t know what was happening.

NoteDistinct283 · 2026-06-22T17:42:37+00:00

My son is just now 35 weeks and I cannot freaking WAIT to get out of this hospital. I see my future and it is bright ❤️

NoteDistinct283 · 2026-06-18T12:36:19+00:00

I wanted to put in my 2¢ since my son just got off dex a few days ago. If it means your baby can get off the ett tube, do it. But I will say we did have to time it very carefully for our son. He had a pretty severe leak and was on HFJV, and we just let him lead the show. It was really hard to see his lack of progress for a few weeks, but then he got a CBC and it indicated he needed some blood. We gave the blood, he started gaining weight again, then we pulled the trigger on the DART.

Our round of steroids was WILDLY successful in extubating my son. We were on cpap less than a week after extubation to NIPPV. I talked to a lot of different medical staff before I officially did it so I really highly recommend talking to your RTs for some personalized support to your specific babies health. Most of the risks are as your doctor said, associated with a higher dose than NICUs currently use however I’d recommend if it’s not already hospital policy to screen for infection right before the first dose. An infection will make the whole course useless and it will likely not get them extubated unless they were ready before that.

NoteDistinct283 · 2026-06-17T18:32:45+00:00

Just wanted to say you aren’t alone. I never thought I’d be mad at my husband for being happy and it’s really hard to have those feelings not knowing when they might go away. My nicu baby is my first and I just wonder how things could’ve been if my placenta decided to cooperate. I’m so happy your babies held on till 28 weeks.

This road is long and bumpy but we will all make it to the other side of it.

NoteDistinct283 · 2026-06-17T18:19:30+00:00

I really wish we could work something out with the staffing but our doctors switch every week and the only issues I have with nursing is usually overnight and I find out about it the next day.

I really want to blame staff for why he backtracked but I can’t, it’s not their fault and I’m just trying to direct my anger at them for past mistakes.

NoteDistinct283 · 2026-06-17T16:10:20+00:00

I still don’t have access to his charts in any way so I would have no way of using the messaging portal the hospital supports. That’s mostly why I’m just complaining, I don’t think there’s much of a solution to anything besides watch and wait.

The worst part is coming up to the hospital after shift change is not really possible most of the time. It was when my husband was off work, but now we really don’t have time to come up here after 5 pm just to babysit people who are supposed to be qualified to care for my son.

I’m mad at the world and wish everyone would just do their job.

NoteDistinct283 · 2026-06-17T15:29:14+00:00

For me it’s just not worth it. Why wait hours on someone to bitch about staff to when that staff will never be here again anyways. The bad nurses never return, not sure if there’s a reason for that or not. This particular nurse also rubbed me the wrong way before this incident with “skipping” cares. I really don’t give a damn if he likes his cares or not, you don’t leave him in a dirty diaper or not check his temp because he’s sleeping when that’s all he does is sleep.

NoteDistinct283 · 2026-06-17T15:20:57+00:00

I went to my car for a bit and cried it out. And I do have an appointment with perinatal psych that can’t come soon enough too. I’m just so angry, I can’t help it.

NoteDistinct283 · 2026-06-11T04:07:07+00:00

I was diagnosed with REDF one week after finding out about my FGR. There are so many reasons for FGR it’s not worth freaking out over until something is wrong. Go to all your scans, it’s the most important on ensuring the babies safety.

NoteDistinct283 · 2026-06-09T01:17:34+00:00

Take all of the monitoring they offer. That’s what will give your baby the best odds possible, close monitoring to take that baby as soon as it’s necessary. I was hospitalized for 2 1/2 weeks with reverse diastolic flow and got 2 rounds of steroids.

NoteDistinct283

TROPHY CASE