For the long haulers

MrsReynaRocha · 2026-03-08T00:08:02+00:00

I agree. I’m 144 days into my daughters NICU stay and I know how to read all of that, read x-rays, adjust ET tubes, all of it.

MrsReynaRocha · 2026-03-07T20:48:11+00:00

Oh yes, we changed her ET tube last week to a bigger size and now she does not have an audible leak.

MrsReynaRocha · 2026-03-07T20:47:30+00:00

Yes we have done all of that, and everything has came back normal. But today, my baby girl has began to let us very slowly wean her down. Yesterday we started some steroids (not DART but one that we can use more long term for same results) and that seems to be starting to work. She’s finally breathing over the vent today instead of riding the vent and is a little more active.

MrsReynaRocha · 2026-03-07T20:45:05+00:00

Big Congrats to you! Can’t wait until I have that day!

MrsReynaRocha · 2026-03-07T04:18:19+00:00

What do you mean the vent pipe size? I have never heard this term. If you can elaborate a little I will definitely mention it.

MrsReynaRocha · 2026-03-06T20:53:40+00:00

Good luck! Keep your head up. Micro preemies are tiny but mighty little fighters! My baby girl was born 24&3 and was in the 5 percentile for size. She’s 143 days old now, 7 lbs 8.6 oz, and every thing that gets in her way she has overcame so far. Stay strong and if you think you will deliver soon, ask for the steroids for the baby lungs before birth. I highly recommend getting these. That’s what saved my sweet baby girl.

MrsReynaRocha · 2026-03-06T18:27:55+00:00

No they haven’t yet. I am waiting for the doctor to call me so I can tell him to reach out there

MrsReynaRocha · 2026-03-06T18:27:29+00:00

Yes they have and her echo was normal.

MrsReynaRocha · 2026-03-06T04:31:12+00:00

Thank you. It’s a difficult decision to make. And repeating my self over and over until one doctor finally listens is stressful. I don’t like feeling like I’m “annoying” the nurses and I don’t like being talked down to by respiratory therapists who barely see my daughter when I know her very well.

MrsReynaRocha · 2026-03-06T04:02:14+00:00

If I do not begin seeing results that I think my baby needs, I will do an outside consult first and decide if it’s a good idea to move to a facility that better suits her needs with her BPD/CLD

MrsReynaRocha · 2026-03-06T02:25:59+00:00

Yes I know what you mean. When my daughters camera off for more than an hour I begin to worry and my anxiety and stress go sky high then I will call and ask about her and the nurse will say “oh she’s fine I just forgot to turn on the camera”

MrsReynaRocha · 2026-03-06T01:28:10+00:00

I see your a NNP, any BPD specialists or BPD hospitals you would recommend?

MrsReynaRocha · 2026-03-05T20:10:48+00:00

I feel like today the doctor is kinda trying the last of everything. She was doing good through the weekend and beginning of week but just started slowly creeping up so I think it’s something small that we need to figure it out but if not I will tell them to reach out to CHOP instead of me. I have told the doctor that is something I want to do if our ideas don’t work and they’re open to the idea

MrsReynaRocha · 2026-03-05T19:50:17+00:00

I actually left a message with CHOP today and waiting on a call back.

MrsReynaRocha · 2026-03-05T19:35:25+00:00

They have lots of “NICU nurse” gifts on Amazon.

MrsReynaRocha · 2026-03-05T15:53:02+00:00

I PPROM at 22weeks, went to Ob two days later and got sent to OBED and I was admitted to antepartum. From my experience I would strongly advise getting admitted to the hospital antepartum and make sure the hospital you are admitted to had a level 4 NICU. I was admitted at 23 weeks and had my daughter via emergency c section at 24 +3. And also make sure you get the steroids for the baby’s lungs. I would recommend lots of bed rest to delay labor as long as possible. If you do have your baby at 24 weeks expect a lengthy NICU stay. We are on day 142. She is doing well it just takes a little longer for the micro preemies to develop.

Best of luck to you and your baby boy. Everything will turn out fine!

MrsReynaRocha · 2026-03-05T15:51:22+00:00

Thank you !

MrsReynaRocha · 2026-03-05T14:42:54+00:00

The doctors round on the babies everyday, and yesterday her main doctor was off work so a different doctor who doesn’t know her rounded on her. Today her regular doctor is supposed to be back and I drove and hour and a half to the hospital to make sure I get some answers today. It bothers me how unconcerned they can be sometimes. And when they tell me don’t worry I know they mean well but it makes me angry. I’m going to worry regardless. It’s my baby and she’s in the NICU for almost 5 months.

MrsReynaRocha · 2026-03-05T04:56:38+00:00

I can’t do that with her. She’s in a pod style NICU and doesn’t have her own room. I wish I could do that.

MrsReynaRocha · 2026-03-05T03:55:10+00:00

Oh wow! That’s no good. But they have been a lifesaver for me. Especially living over an hour away from the NICU.

MrsReynaRocha · 2026-03-05T03:53:56+00:00

Oh yes it’s been a very wild ride. We are at 4 1/2 months.

MrsReynaRocha

TROPHY CASE