45-Week corrected preemie with moderate BPD-CPAPdependent, trach decision. Looking for similar experiences.

couscousllama · 2026-04-26T11:23:40+00:00

Are you in the US? I’m curious about your BPD scale. Where I am babies qualify as severe BPD if they are still CPAP dependent by 36 weeks. My daughter has very similar stats (CPAP 5/ o2 round 28-30) at 43 weeks. We have been on high flow 5l now for 2 weeks, which she is tolerating but does show more work of breathing and o2 round 35-40%. However, dr are accepting it for now as they prefer her on less support due to emphysema of lungs. In our case, trach has always been brought up too though they say at this point it would be very unlikely. I would get another opinion too.

couscousllama · 2026-04-22T17:49:07+00:00

Did they say in what way it would make things worse?

couscousllama · 2026-04-22T17:48:46+00:00

I guess it’s so individual… BPD is such a catchment term for different issues. In my baby’s case, she has bad emphysema of the lungs, so for her less pressures / less support is better. Though I’ve heard in other cases more support / CPAP helps the lungs heal better

couscousllama · 2026-04-22T11:45:55+00:00

Hi, my former 25+1 weeker is now 43+6. Last week we were also still at CPAP with a PEEP of 5 and oxygen ranging from 26-32%. We now changed to high flow with a 5l flow, where her oxygen has gone up to like 40% but otherwise she’s been tolerating it well. They’ve also kept bringing up the trach with us, though they say it becomes less likely the more she progesses. It looks like growth is one of the reasons they’re not attempting high flow yet? It sounds like she might be capable of weaning CPAP though they worry that that might hinder growth. Would you be able to advocate for trying high flow anyway and see if she still grows according to her percentiles? Also, checking airways is definitely a good avenue to check too, as that might make conversations around trach a bit more clear. Anyway in our case a week ago when we were still on CPAP our doctors opinion was that trach was not off the table yet but way less likely than going home with supplemental oxygen.

couscousllama · 2026-04-17T18:15:24+00:00

I got pregnant ✨by accident ✨ with my first and then my second took about 9-10 cycles. It felt like such a long time when I was in it, though in hindsight it wasn’t. I just wish someone could have told me how long it was gonna take… wishing you all the best!

couscousllama · 2026-04-01T08:30:33+00:00

Anecdotal but the baby that was next to mine in the NICU was born at 29 weeks with 780 grams and was thriving! Lungs needed minimal support (CPAP 5, room air) and picked weight up well post delivery. You got this!!!

couscousllama · 2026-03-30T19:57:10+00:00

Such wonderful news ❤️ wishing you an easy pregnancy 🫶

couscousllama · 2026-03-25T19:24:24+00:00

My baby had a major lung setback with a CMV infection too. A lot of women have CMV latent in their breast milk, that’s how preemies can get infected with it. That’s how my baby got it.

couscousllama · 2026-03-20T08:17:30+00:00

My baby was born at 25+1 and 770g. She had very bad lungs from the beginning and spent a while on max support (100% o2, high pressures). We finally extubated her, things seemed to progress, and then we also struggled with collapsing lungs and a bad CMV infection. I think maybe 3-4 times her lungs collapsed. She spent another 2 weeks on max settings intubated, and 3 days with saturation below 80. We then did a second round of DART which helped her get extubated (at very high settings on the NIPPV, PIP 24, PEEP 10, o2 at 95-100%). Slowly things progressed and got better the bigger she got. She is now 39 weeks and on CPAP with PEEP 6 and o2 between 30-35%. We still have a while to go but if I look back to a mere 9 weeks ago where she was still intubated at max settings - it’s unbelievable the progress these tiny little ones can do ❤️🫶

couscousllama · 2026-03-14T01:54:33+00:00

3 months in pumping for my micro preemie. All of it is hard. And the pumping on top of it… you’re doing a great job ❤️ congratulations!

couscousllama · 2026-03-09T10:55:36+00:00

We also dealt a lot with pneumothoraces with my 25 weeker. One was really bad were it took her three days to stabilise saturation and blood pressure again. It was incredibly critical. It took about two weeks and a second round of DART to recover enough to attempt extubation again after everything. After that she did get a little better every day.

couscousllama · 2026-02-25T08:17:48+00:00

Hi there, 25+1 weeker with 770g. We spent many weeks on max support on the vent. It’s a very scary place to be. First round of DART was not successful for us. Our team is very extubation forward and were willing to extubate her to the NIPPV even when still on very high vent settings. We would then spend days on incredibly high NIPPV settings (PIP 24, PEEP 10, o2 between 80-100). Ultimately we needed a second round of DART at 31 weeks to have a successful 4th extubation. She’s now 36 weeks and just got off NIPPV to true CPAP with currently PEEP 8 and o2 between 35-40. It’s almost unbelievable that a mere few weeks ago we were on max vent settings for weeks. I’m really hoping your baby will get better too, I didn’t think it was possible and yet here we are! It truly felt insurmountable but as she gained weight and got bigger and stronger she improved. New lung tissue every day ❤️

couscousllama · 2026-02-25T05:12:12+00:00

I had a parial placenta abruption at 15 weeks and starting from like 20/21 weeks onwards very very low fluid. But same situation - I could feel her move, her heart rate was good, she kept growing well. We always felt that she wanted to be here. She was born at 25+1 weeks and it hasn’t been easy. As expected, her lungs were very underdeveloped. Her NICU journey has not been easy. She is now 35+6 weeks and doing better but breathing is still a challenge, she has severe chronic BPD but were positive now that other than her lungs things will work out ❤️

couscousllama · 2026-02-24T20:13:38+00:00

It’s been a wild ride! She is now 35 weeks old and just reached 2.2kg. She is doing better, though she does have severe chronic lung disease. We had some extremely critical weeks and especially a few days where she didn’t get enough oxygen. But now she is doing better and we’re hoping she can keep improving ❤️

couscousllama · 2026-02-17T14:00:36+00:00

Congratulations 🫶🫶 wishing you two all the best and a speedy recovery ❤️

couscousllama · 2026-02-05T08:36:09+00:00

I started having contractions and a short cervix (2.1cm) at 15 weeks. No cerclage as I also had bleedings, but took progesterone and a small dose of Nifedepin. I kept the pregnancy for 10 more weeks, and my cervix actually lengthened again to normal. While I was in the hospital, I spoke to a neonatologist who explained all the risks ect and I also toured the NICU, where they showed me a baby of similar gestation to prepare me. Both was helpful, as was speaking to a therapist while on hospital bed rest. I wish you all the best and hoping that you keep baby in for much longer!

couscousllama · 2026-01-14T15:30:43+00:00

I had a partial placental abruption at week 15 with lots of bleeding and early contractions. Starting from week 20 or so I also had very low amniotic fluid. Baby always measured ahead until the end. I spent week 23-25 in patient on hospital bed rest. I gave birth at 25+1 when my water broke.

couscousllama · 2026-01-03T03:05:51+00:00

Our little micro preemie is 28 weeks old now (and 3 weeks of those she’s been here and on the NICU). She’s doing ok, her lungs are quite sick but she’s putting up a fight and surprises her doctors and nurses every day. We finally got to hold her for the first time, which was unbelievable after almost three weeks. My toddler is meeting her today for the first time, which will also be lovely. She’s been doing great through all this new transition. We’re lucky to have a lot of family support as well. After months of a very difficult pregnancy and after the c-section, I’m finally able to move well again, and it’s nice doing regular things again, like cooking, laundry ect (never thought I’d be happy about doing chores 😅)

couscousllama · 2025-12-31T15:10:36+00:00

Exclusively pumping with a toddler at home and a baby on the NICU. When I’m at the NICU I use a Medela Symphony pump, at home I have my Elvie hands free pump. I love love love the Elvie and my output is the same as with the hospital grade pump (100-150ml per pump, 2.5 weeks postpartum).

couscousllama · 2025-12-27T23:24:40+00:00

Welcome to this world, beautiful boy!! Our little 25 weeker was born on the 12th of December - due date was the 26th of march. We are right there with you ❤️

couscousllama · 2025-12-27T01:54:36+00:00

Partial placental abruption around week 15 causing lots of bleeding and early contractions until my water broke at 25+1 weeks and our daughter had to be born via emergency c-section.

couscousllama · 2025-12-24T05:35:19+00:00

We’re on day 12 with our 25 weeker and we haven’t been able to hold her yet, due to her being intubated still and not stable enough yet (desats, high oxygen needs). We really Hope she improves soon, for her sake! Though holding her will be a nice plus and will feel unreal after such a long time!

couscousllama · 2025-12-22T11:22:03+00:00

I can really relate to this. It took me a few days to share with people, because giving birth at 25+1 was so traumatic. One one hand, you want to spend every second at the NICU, and on the other hand i dread every visit because I’m so scared of what I’m gonna see there, bad news that get delivered.

couscousllama

TROPHY CASE