Premie baby coming home on 1/2 liter oxygen

[sophiepoeta]

Our son was born at 25 weeks. He has had a pda closure and has BPD. He is now 10 weeks adjusted. We just brought him home on 1/2 liter of oxygen and he has been doing well with it since they have put him on it. I am just curious of a average time that he will stay on the oxygen until they can take him completely off of it. Anyone been in a similar situation?

 

[munzurul]

@sophiepoeta Can you tell me how the PDA closure went? How old your son was and what procedure they did. Our son was born at 22 +1 and is now 25 +4 and will be 26 by the time surgery happens. Sometime next week, they're not sure yet the day. They're doing ligation and not the coil because he isn't 800 grams yet. He is only 700. I'm happy you guys get to bring your little one home. Congratulations

 

[sophiepoeta]

@munzurul The pda closure went well. They didn't do the closure until he was 36 weeks though and was about 6lbs. They went with a coil for the closure.

 

[munzurul]

@sophiepoeta Ok, thank you. We are so nervous, but he has to get it. The doctors believe it will help other problems happening. Other than that he is doing great. No brain bleed. Getting bigger. The Tylenol didn't work.

 

[sophiepoeta]

@munzurul Yeah they tried Tylenol for us and it didn't work either. I do believe that if they did the closure sooner that his lungs would have been slightly better because of all the extra blood pumping.

 

[dre54ger]

@munzurul If you want to ask questions feel free to DM me.

 

[sophiepoeta]

@dre54ger Awesome. I appreciate it.

 

[dre54ger]

@munzurul Hey fellow 22wker! We did three rounds of aspirin before we got the pda closure at 40 wks. Glad to hear he’s doing so good!

 

[munzurul]

@dre54ger How is your LO doing? This is such an up and down road.

 

[dre54ger]

@munzurul 14lbs now and off oxygen and feeding tube for a few months now. So crazy to see pictures from a year ago. It gets a lot better I promise. Especially after you get them home.

 

[munzurul]

@dre54ger Omg this gives me hope. I am so happy for you guys. Our LO is 700g and that is big to me now.

 

[dre54ger]

@munzurul Our LO was 290g when she was born and the first day we put clothes on her she looked huge at 3lbs

 

[member64]

@sophiepoeta My son was born at 24+3 13 years ago. He also had pda closure and bpd. Came home on oxygen and had it up until around his first birthday, so around 8 months.

 

[sophiepoeta]

@member64 Thank you for the information. Was he on 1/2 liter coming home? Also, did they just slowly wean him down once he was home?

 

[member64]

@sophiepoeta He was slowly weened down. It’s been so long I can’t remember how much he came home on but I definitely remember them weening it down slowly.

 

[straykat]

@sophiepoeta One of my 27 week twins came home on 0.5lpm O2. At home, where he’s not being seen by a doctor every single day, the weaning process is kind of nonexistent. With his pulmonologist approval, I kind of weaned him myself (took O2 off while he was awake, and kept pulse-ox on and just put the O2 back on if he needed it). He worked down to only needing it during sleep, but pulmonology didn’t want to completely take it off until he had a sleep study completed without it, and it took a couple months to schedule the sleep study. It was like “I think he’s ready now so let’s schedule the sleep study… they have a spot in 2 months” and if I’d been more on top of things I would’ve asked to schedule it earlier, before he was ready so that he wasn’t delayed by that wait. It wasn’t a big deal but we traveled a lot for one of his specialists and I couldn’t wait to get rid of that concentrator he ultimately had the sleep study and came off oxygen the week he turned 1.

 

[mistie87]

@straykat We weaned at home on our own. After a while of him holding steady above 98% with no drops we turned it down a bit and monitored how he did. Our children’s hospital dropped the ball and messed up scheduling then tried to do it something like 4 months away when we were already off the oxygen all day. The sleep study never actually ended up happening. We kept him on the pulse ox though just to be certain.
He was on the oxygen for about 6 months, then we sent back the equipment 6 months later.

I will say though that something I hadn’t considered was traveling. We live at a low altitude and took a family trip to the mountains with him. I had to turn the oxygen back up a bit for the first couple of days there while he adjusted to the change.

I don’t necessarily suggest just figuring out weaning on your own, or skipping follow-ups, but we have an advanced medical professional as well as a NICU nurse in the family that could each offer insight and advice.

 

[lowolf]

@sophiepoeta My daughter was born 38+3 so she wasn’t a premie but she did spend time in the NICU for meconium aspiration, so she’s been on oxygen flow ever since (born 11/14 this year). Spent 19 days in the NICU on all levels of oxygen; a half, quarter, and an eighth but she does really well on the half. We were discharged on the 1/2 of oxygen at home and she’s still on it but we are seeing some small improvements. Sorry, I don’t really have an answer as we’re still going through it too, but I wish you guys a speedy & safe recovery!

 

[sophiepoeta]

@lowolf That's amazing to hear that you are making improvements. We've been hoke for a week and he hasn't desat at all. He does occasionally drift to like 96-97 when he's in a deep sleep though.

 

[lowolf]

@sophiepoeta Our daughters the same way, it’s only when she’s in a deep sleep but our nurses and doctors told us that it won’t be like this forever and just takes a little time!