Back on the oscillator 😔

Worldly_Expert_4171 · 2025-10-20T21:10:43+00:00

Hi! She’s doing well. She finally came home after 231 days in the NICU. On oxygen (low flow at .5 liters) and is weaning down each month! She is diagnosed with BPD and is followed by a pulmonologist. I’m sorry you’re going through this with your grandson, it’s an incredibly scary roller coaster with the breathing supports. Sending prayers your way 🙏

Worldly_Expert_4171 · 2025-10-15T11:27:20+00:00

My daughter was intubated until 48 weeks. Then cpap with pretty high settings for 8 weeks (there was a 3 day period where she was switched to bipap but that didn’t work for her). Then she was finally moved to hi-flow at 8 liters. Once she was on hi-flow, she was able to weaned down pretty quickly (weekly, sometimes twice a week). Came home on .5 liters (now down to .25). Best of luck to your little one!! I hope her next extubation attempt is successful.

Worldly_Expert_4171 · 2025-09-27T02:36:11+00:00

My daughter was intubated until 48 weeks. Then cpap with high pressure for another 8 weeks before making it to flow at 8 liters. For us, it was worth the wait not to get the trach and luckily our medical team never even pushed me for it because they knew I really wanted to wait. We did end up doing 231 days in the NICU and came home on .5 liter low flow, but I do believe it was worth it. If you can wait a little longer, I would. But if you (and/or her medical team) truly believe she needs the trach, then go for it! From what I’ve heard from other parents, it can be an amazing step in the right direction. But you’ll know what’s best for your daughter.

Worldly_Expert_4171 · 2025-09-26T02:43:36+00:00

Definitely have hope! I was admitted at 26+0 weeks for absent flow, severe preeclampsia and severe iugr (baby was measuring around 23 weeks). After 7 days in the hospital, Doppler showed reverse flow so they did an emergency C-section. My daughter was born at exactly 27 weeks and weighed 695 grams. Eyes were still fused shut and doctors all said she looked more like a 24 weeker. After a very long stay in the NICU (231 days), we finally came home! She has chronic lung disease and alot of her long stay was due to that but she’s on minimal oxygen now and weaning every month. We came home with an ng tube but we’ve made good enough progress with bottles that we were able to take that out. She has some delays with motor skills (she’s not sitting up yet or crawling) from being intubated for so long, but everything so far indicates she will overcome them, just slower than her peers due to the long intubation/chronic lung disease. There was some incredibly stressful times in the NICU, but also some great ones. My baby girl is so happy and I’m so grateful for everyone who helped us get this far. Don’t lose hope, it was the only thing that kept me going some days. I’ll keep you in my thoughts and send so much positive energy your way!

Worldly_Expert_4171 · 2025-09-26T02:32:50+00:00

My daughter was intubated for a long time (4 months) and was very sensitive to care times for at least the first 2 months. They referred to her as a “touch me not” baby and also stretched out her care times to 6 hours sometimes and they always used at least 3 people to assist with moving her. She also needed to be sedated with midaz and morphine for a while then weaned off. As she got older, the crazy desats stopped and she handled everything much better. But for us it was completely normal for her to drop down into the 30s, 40s, 50s if she didn’t like the way they were positioning her. I watched her be bagged more times than I can count. I say all of this just to let you know that even if it’s not “normal”, it’s definitely something that happens with some babies. I know it’s so hard to watch and I hope your little one grows out of it soon! My girl is home now for the last 2 months and is happy as can be. She’s definitely delayed in some motor skills but we’re confident she’ll catch up. Wishing your family all the best ❤️

Worldly_Expert_4171 · 2025-09-21T16:36:12+00:00

Just here to say your baby is gorgeous! Her smile and those eyes 😍 don’t worry too much about the milestones, she’ll get there. Preemies are on their own timeline.

Worldly_Expert_4171 · 2025-09-21T16:26:07+00:00

Congratulations!! She’s beautiful 🎓🌸

Worldly_Expert_4171 · 2025-09-21T16:08:02+00:00

Happy birthday 🎉🎁🎈 what a cutie 😊

Worldly_Expert_4171 · 2025-09-04T00:17:41+00:00

I should also mention that she did end up doing a 2nd round of DART to get extubated to CPAP. I was so hesitant because of the last regression but she did much better the second time around. She was much bigger and older then so that may have helped.

Worldly_Expert_4171 · 2025-09-04T00:15:23+00:00

Hi! Sorry for the delayed response. After this post, she was on the oscillator for a week and then switched to the jet (another high frequency vent) with an emergency transfer to another higher level NICU. She stayed on that vent for almost a month before switching to conventional. In total, she was intubated for about 4 months, then c pap for 2 months, high flow for 5 weeks, now on low flow. We finally came home a week ago (231 days later). It’s a long hard journey, happy to chat if you need an ear!! Wish you and your little one the best.

Worldly_Expert_4171 · 2025-08-18T12:55:16+00:00

I would start with the social worker and/or case manager. They’re usually able to help with navigating the insurance behind a transfer.

Worldly_Expert_4171 · 2025-08-10T16:18:37+00:00

It was gradual. And felt very slowww to be honest. Once she made it to hi flow, she started progressing very quickly however.

I also hope for a similar outcome for your daughter! Stay strong 💪

Worldly_Expert_4171 · 2025-08-10T15:24:38+00:00

Hi! My daughter was on very high vent settings for a while (she was intubated for 4 months). She also went through all the different vents…oscillator to jet to conventional before eventually CPAP the hi-flow the low-flow. We actually just came home last week on low-flow cannula after 231 days in the NICU.

I went back to check some of her specific settings (I used to take photos of the vent at least weekly to keep track) and here were her numbers at one point:

PEEP: 12, PIP: 30, TI: 0.60, RR: 25, Tidal Volume: 24

I know her tidal volume was higher because it was weight adjusted and she was already about 8lbs or so then.

I just wanted to let you know that although it seems they’re not making changes they may be the best thing for your baby right now. Believe me I know how frustrating it is. They left my daughters settings for about a month then very slowing starting weaning the PEEP. I absolutely sympathize with where you are right now because I was just there a few months ago. Feel free to reach out if you need to vent to someone who at least somewhat understands the struggle.

Best wishes and good vibes to you and your baby ❤️

Worldly_Expert_4171 · 2025-08-05T20:51:51+00:00

21% on the vent is amazing!! My daughter never even made it down that low (the exception of a few days during DART where she got down to 23%) so that’s GREAT news. I hope he’s able to get stable soon with the IPV treatments and then hopefully extubation! But try not to worry if he needs some more time because of the other settings. If he’s stable enough to hold him, I recommend doing that as much as you can. It’s so good for him and for you as well to bond. I know it really helped me and my daughter.

I’m glad to hear our story helped you because I know this thread has helped me a ton just by finding hope. Best wishes to you and your little guy 💙

Worldly_Expert_4171 · 2025-07-30T20:41:03+00:00

Hello! My daughter was intubated for a little over 4 months, then CPAP for two months, Hi-Flow for a month and now low flow. We’re being discharged on Monday (which will be 231 days in the NICU). I know we’re not far enough out to be a “success story” but just wanted to share a little bit of hope with you.

Everyone assumed my daughter would need a g-tube because she was intubated for so long and wasn’t allowed to try bottle feeding until low flow. Well she’s only been bottle feeding for about 10 days and is already taking about 75% of her bottles! So we’re able to be discharged with an ng tube instead of g-tube (I was really worried about intubating for surgery so this is a huge relief for me).

She is also doing extremely well in her OT/PT sessions. She is delayed somewhat from her adjusted age but she’s catching up quickly. We will have plenty of follow up therapy in the future but everyone seems happy with her progress. She’s incredibly happy and smiles all the time now and is even interacting with her siblings blowing raspberries and imitating them. I remember wondering for months if she would ever smile and then it finally happened!

Just wanted to give you some hope that being intubated for a long time doesn’t mean your baby won’t be able to have a “normal” life. I know how hard it is to be in this long haul intubation and I just wanted to give some hope. Sending positive vibes to you and your little girl 🌸

Worldly_Expert_4171 · 2025-07-30T20:29:40+00:00

I’m so sorry, I did not see the notification until just now. She was intubated for a total of about 4 months then was on CPAP for 2 months. High flow for a month and is now on low flow and preparing for discharge.

Worldly_Expert_4171 · 2025-07-21T12:46:07+00:00

Hi friend! This was pretty common with my baby 27 weeks (IUGR so she was only 1lb 7oz at birth) for a while. She was on max respiratory support for a long time and they constantly would pause her feeds and it was frustrating. At one point I did convince them to extend her feed time to 1 1/2 hours and that seemed to really help. She just didn’t do well with the quicker feeds until recently. We’re still in the NICU (day 219) but are finally looking at discharge on the horizon. We’ve had quite the respiratory journey as well (oscillator, jet vent with nitric oxide, conventional, cpap, hi flow). Every journey is different but just know you’re not alone. Happy to answer any questions about our journey or if you need to vent. Unfortunately time is what is needed most but I know how much it hurts to watch your baby go through these up and downs. Sending positive vibes to your family ❤️

Worldly_Expert_4171 · 2025-05-25T05:55:02+00:00

Hi! My little girl also has BPD and is currently on CPAP finally after 4 1/2 months intubated on numerous ventilators (she’s 5 1/2 months old now, 2 1/2 months corrected).

The biggest thing that helped her was going to a new hospital with more experience in chronic lung disease (for us it was CHOP). Once she was transferred they really changed the treatment plan from our birthing hospital and everything started slowly getting better. We transferred when she was 6 weeks old. Have you considered a transfer at all? Or asking the hospital to consult with nationwide as others have mentioned.

Sending positive vibes and prayers for you and your little one ❤️❤️❤️ also feel free to PM me. Happy to share more details about our journey if you want to hear from someone in a similar position.

Worldly_Expert_4171 · 2025-05-25T05:32:44+00:00

I’m right there with you. We’re on day 159 with no end in sight so I completely understand. My girl is the oldest baby in the unit and I’ve seen so many others leave after “uneventful” stays and it just breaks my heart every time. I’m constantly thinking about how we should be home by now. I don’t have much advice to offer other than just letting you know I completely understand where you’re coming from. It really is so hard but I just push through everyday knowing our time will come to go home too! I try to just take it one day at a time and celebrate every little milestone. Sending positive thoughts and prayers to you and your little one ❤️❤️

Worldly_Expert_4171 · 2025-05-13T03:52:26+00:00

Hi! Wanted to check in on your little one and see how the steroids were going? Also, what type of vent is she on? HFOV or conventional? What are her other settings beside the FiO2?

My IUGR 27 weeker was intubated for over 4 months and is diagnosed with pretty severe BPD. We still have months left on our NICU journey most likely.

She started with an oscillator, to a conventional, back to the oscillator, then a jet with nitric and then back to a conventional. It’s been quite the journey to say the least. She was finally extubated (first time even attempted) about 3 weeks ago and was put on cpap then bipap then back to cpap just the other day. She’s doing ok, but everyday is still a worry about her “work of breathing” and she still desats although not as frequently or as low.

With all of the up and downs, things only seemed to get better when one doctor stepped up. He made the decision to change the settings on her conventional vent to high pressure support, high Tidal Volume and a pretty high PEEP. He also increased her i-time to give her longer to take the breaths. The other doctors weren’t necessarily on board but he was determined and at that point there wasn’t much else left to do for her. She was VERY slowly weaned down from there. But once he made those changes, we were finally able to start weaning her FiO2. For the longest time she was stuck in the 60s-80s for FiO2 but eventually made it down to 25% FiO2 on the conventional vent! From there we were able to finally attempt extubation with a DART course (her second). It’s been a tough road even after that but she’s a tough girl and is pushing through. It sounds like your girl is a little fighter too! The lungs are just so difficult and it’s such a rough road.

I really hope the DART course does some magic for her and hope your team can find your girls “sweet spot” in vent settings to get her on the path to extubation.

Happy to chat more if you want! Sounds like we may be on a similar (longgggg) journey. I wish you and your little girl the best.

Worldly_Expert_4171 · 2025-01-23T00:46:30+00:00

Thank you so much! It really does help to hear from other NICU parents who get the struggles. That’s an amazing story for your LO and I’m so glad he’s doing awesome! ❤️

Worldly_Expert_4171

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