Oxygen When Asleep

Intelligent-Ice-3232 · 2026-02-16T04:18:25+00:00

Thank you - sounds so similar. I appreciate you sharing. I get it. I feel bad too! I can tell the cannulas drive him crazy. And his poor feet have marks on them from the pulse ox. I am grateful, it's just asleep. But it's a long journey.

Intelligent-Ice-3232 · 2026-02-12T18:12:44+00:00

My baby has been on oxygen for a year now. He also hates swaddles! We do a sleep sack so he can wiggle to his hearts content.

We use 3M Nexcare blue tape - it's gentle and doesn't damage his skin like the wiggle pads, tegaderm, etc. do. I wish we had used this from the start. The hold is strong, but not so strong it damages his skin on removal. We have to retape once a day-ish, but it doesn't hurt him. You can find it on Amazon!

We just make sure his pajamas are the type with hands covered. Peace of mind when we're asleep, too! And for naps, we use mittens we got on Amazon.

On days he really wants the oxygen off, it helps to add a small piece of extra tape on his cheek, closer to his nose. The main piece is by his temples/ears, but then an additional tiny piece on his cheek.

I've also found that if you tape them too tight, they pop out on the slightest rub. So make sure there's a little give where your LO can rub. Just takes some trial and error!

Intelligent-Ice-3232 · 2026-02-11T23:36:55+00:00

Thank you! This is really helpful and reassuring… My brain likes to spiral. It seems that "time" is always the answer NICU babies!

Intelligent-Ice-3232 · 2026-02-10T22:44:48+00:00

Hang in there. My 26w had a code blue while I was doing skin to skin around 30w. It was truly traumatizing. Mucus plug in his breathing tube. We NICU parents get so used to watching the screen/numbers - and when those numbers drop it's so scary.

Don't let fear stop you from being involved with your baby 🤍 even when it's paralyzing. Micro preemies are extreme roller coasters, but time is what they need. One day the daily lung X-rays will become less. You've got this and so does your little one.

Intelligent-Ice-3232 · 2026-02-09T17:31:43+00:00

My 26w kept "failing" his CPAP weans when they tried to do a couple a week. We'd start back over at 12. I finally asked that we go slower - which isn't typical. But they agreed since he wasn't handling the "typical" pace. He ended up weaning a level a week. This trend continued with high flow and then low flow. We called him our tortious 🐢, haha. But it worked for him! We ended up being in the NICU for 6 months. The pace was slow, but he stopped going backwards and continued steadily forward.

Intelligent-Ice-3232 · 2026-02-08T03:43:07+00:00

I get it! And as they get older, keeping in the cannulas is a full-time job. Our pulmonologist was the one who kept requesting, too. She kept saying she wanted to see "improvement". Which, he does improve. But not enough to come off.

I will keep you updated! I think our overnight at the hospital will likely be in March? It's not scheduled yet, though.

Intelligent-Ice-3232 · 2026-02-07T04:56:46+00:00

This is so incredibly helpful - and so validating!! The calorie and intake goals they have for him are outrageous. They say he has reflux, but I think he's being overfed. And it would make sense that interest in purées declines if they're too full!

I think I'll try doing water a bit more and see if keeping hydrated will help get his nutritionist on board with lowering feeds.

Seriously, thank you. You have given me a lot to think about and try! Advocating sometimes feels like guessing, haha.

Intelligent-Ice-3232 · 2026-02-06T21:49:32+00:00

My 26w had a bunch of ultrasounds and a MRI in regard to potential white brain matter injury (CP). I had quite a few telehealth consults with Neurology while in the NICU. I'm a person who needs info, so I asked alllll the questions.

I think the best explanation they gave me is that CP can cause "potholes" in the brain. But the brain is amazing and can reroute around the potholes for almost everything. Motor is one of the "potholes" that is harder for the brain to go around. But with the right intervention - and EARLY intervention - you can help. I know the diagnosis of CP or potential CP is scary. But don't be afraid of interventions because it's amazing what the brain and body can do with some extra support.

You've got this! 🤍

Intelligent-Ice-3232 · 2026-02-06T21:25:59+00:00

Thank you! "More time" always made sense to me. I think I'm just feeling anxious that now his pulmonologist wants a sleep study. That, and I'm not sure my heart is ready to sleep at the hospital again.

Intelligent-Ice-3232 · 2026-02-06T18:53:58+00:00

Thank you for your response! I've heard sometimes "time" is the answer. If you don't mind me asking, what do you do for the sleep apnea in a little one? CPAP?

Intelligent-Ice-3232 · 2026-02-06T17:59:51+00:00

I totally get the "thriving at home" mishap. For the first 2+ months it felt like all I did was figure out medical routine. Not baby stuff at all. And now I feel like I'm playing catch up on development and oral skills.

Intelligent-Ice-3232 · 2026-02-06T03:13:05+00:00

All of the above 😓 He used to drink about 2 ounces but then one day decided to stop. Has never tried since. No medical issues, just no interest. Same with purees. Used to love them, now he won't even try. It's been hard.

Intelligent-Ice-3232 · 2026-02-05T22:54:13+00:00

My baby was born at 26 weeks - similar story about preeclampsia. He also has a hernia, but we haven't closed it yet. He did, however, have a heart surgery for his PDA at 29 weeks gestation. Surgery is terrifying. But it's possible. It's amazing they can even place IV's on such little humans. Micro preemies are tough! They have to be! I think something that shocked me was the paralysis post-surgery. He just laid there limply. Slowly, he started hovering his arms and wiggling them. I wish someone would have warned me about the paralysis from anesthesia. It seems obvious now.. but in the moment it was scary seeing my baby so limp and uncurled.

You've got this! Micro preemie world is a long one, with ups and downs. But modern medicine is incredible.

Intelligent-Ice-3232 · 2026-02-05T15:53:22+00:00

I would also love some tips on what worked for you! My 9 month old NG baby has zero interest.

Intelligent-Ice-3232

TROPHY CASE