Having a hard time with oxygen needs and desats.

[BabyMaybe917]

My little girl is 33 weeks gestation today born at 25w5d. She is on 1L with oxygen concentrations ranging from 27-33%. She still has desats especially with feedings and cares. I know overall she is doing really well and if she needs oxygen she needs it. But... I'm getting so stressed about it. She's at the same concentration as when she came off cpap last week.

Just wondering if anyone else can relate and what gestations your LO's came off oxygen. I know every baby is different but I'm still curious.

 

[Jes.shortcake]

Mine didn't come off the oxygen until a week after his due date. It was a couple weeks before he came home. We thought he was coming home on it and was actually preparing for it but that night when me and OH went to visit..it was gone.

 

[BabyMaybe917]

The doctor just informed me today that she will most likely come home on it. She's done so well... ventilator for only 14 hours then to cpap. Off cpap straight to 1L. I just thought with doing well for that she wouldn't be on it much longer. She's still got plenty of time before she'll be out of the hospital and may not need it but I'm still really upset. I just hoped I could leave the NICU behind us not turn our nursery into one.

I think I'm just having a rough day.

 

[4 boys]

I know it's tough and feels like the whole world is eating you up but trust me by the sounds of your posts and your babies journal all has gone really good for you..
I've mentioned my 4 sons preterm probs on here and I've been exactly where you are and experienced the same..

I got told my 26 wk would never come off oxygen ventilator but he fought hard seeing him having difficulty just made me want to stop him suffering but he turned a massive corner and came home I'll have to find dates but was long time.. He was on such high ventilation he had bowel perforation along with nec 2 bowel operations plus stage 3 rop..

Time will tell but as much as your stressing just take a moment to understand how well and far your precious has come on..

I pray she comes home without oxygen but even if she does she'll eventual wean off it..
Take each day at a time

 

[PandaMao]

My little girl was on cpap for quite awhile and then she moved to the nasal cannula. She came off of all air support at 37 weeks gestation. I know what you mean about not wanting to bring the nicu home with you, but I think it's better to have them home with oxygen than still in the hospital. I was in a similar situation because my daughter is home on an apnea monitor. I wish we didn't need it, but she is still having occasional bradychardias. I would much rather have her home on the monitor though instead of stuck there. I hope your baby won't need the oxygen or anything else extra at home but if they do you'll deal with it just fine. I hate the idea of the monitor, but if we didn't have it she'd still be there.

 

[Dinah93]

DD was 8 months actual and 5 adjusted when she came off oxygen, she had steroids but still had the ventilator on 4 occasions for a total of nearly 3 weeks, didn't come home until 4 weeks after her due date - and she was a 28 weeker, so your little girl sounds like she's doing brilliantly for such an early gestation!

We had the nicu community nurse over twice a week and in the hospital clinic every 2 weeks for the first few months home, and DD was readmitted twice, so the idea of leaving the nicu behind was really not possible - more a case of taking the next step on her journey to being well than being able to draw a line in the sand of preemie/normal baby. Most preemies born before 30 weeks will need extra appointments for at least the first two years to monitor their eyes, physio etc.

 

[BabyMaybe917]

Jes that'd be an awesome surprise when you visited!

I know that Ellie has done amazing for a 25 weeker. We have truly been blessed! It's still hard though to know that she may not come home how I envisioned her too. I also know that we'll have tons of follow ups and things I just didn't want to turn her nursery into a healthcare zone I guess. It's all in adjusting.

And obviously I'd rather have her home on oxygen than still in the nicu. It's just hard. And with as well as she had done I assumed she would continue by coming off oxygen. She had also been at 21-25% for several days a few weeks ago. They gave her sodium supplements and then she retained fluid and her oxygen needs went back up. That's another reason why and she hasn't fully recovered from that so it's hard. 21% is the air we breathe. She was on room air for a while and now she's not.

 

[Jes.shortcake]

Jes that'd be an awesome surprise when you visited!

(

It really was..I cried lol

 

[sunnylove]

I know the whole oxygen business is tough! That's the biggest thing these preemie babies are working on because they are not meant to be using their lungs at all and yet we are making them breathe for 1, 2, 3, 4 months outside of the womb when they're not supposed to be. They are little fighters and we are asking a lot from them!! Remember that

Here's my little boy's oxygen story: He was born at 26+3 and was only intubated for about an hour. He was then put on the high flow nasal cannula after that, I'm guessing around 3 liters. About a week later he was just worn out and was then put on the nasal cannula ventilator and was on that for 2-3 weeks, but was always breathing over it. Once he got off that he jumped a bit between CPAP, high flow and low flow and then he was completely taken off all oxygen at around 33 weeks. About 2 days later, he was desatting quite a bit so they put him back on low flow. Then at 34 weeks he was again taken off all oxygen support and this time he stayed off it. He came home from the NICU at 41+1 (8 days after his due date), mainly due to feeding issues. But once he was taken off oxygen finally at 34 weeks, he never had an issue with breathing again.

Make sure you do LOTS of kangaroo time! This helps a TON with baby's breathing. Once the hospital let me do kangaroo care whenever I wanted, my LO's breathing improved significantly. Also, my LO always had a fast heartbeat so we didn't start feedings with him until he was around 36 weeks. I feel like this helped a lot because by then he had his breathing down really well, and wasn't still trying to figure out how to breathe while additionally figuring out how to eat. My LO excelled when he could work on one thing at a time.

Just be patient. It sounds like you have a little fighter and from the little information I've gathered from your post, I highly doubt your LO will be coming home on oxygen. You can also talk to your doctor about it. Our NICU rarely had babies go home on oxygen. Hang in there mama.

 

[BabyMaybe917]

I know the whole oxygen business is tough! That's the biggest thing these preemie babies are working on because they are not meant to be using their lungs at all and yet we are making them breathe for 1, 2, 3, 4 months outside of the womb when they're not supposed to be. They are little fighters and we are asking a lot from them!! Remember that

Here's my little boy's oxygen story: He was born at 26+3 and was only intubated for about an hour. He was then put on the high flow nasal cannula after that, I'm guessing around 3 liters. About a week later he was just worn out and was then put on the nasal cannula ventilator and was on that for 2-3 weeks, but was always breathing over it. Once he got off that he jumped a bit between CPAP, high flow and low flow and then he was completely taken off all oxygen at around 33 weeks. About 2 days later, he was desatting quite a bit so they put him back on low flow. Then at 34 weeks he was again taken off all oxygen support and this time he stayed off it. He came home from the NICU at 41+1 (8 days after his due date), mainly due to feeding issues. But once he was taken off oxygen finally at 34 weeks, he never had an issue with breathing again.

Make sure you do LOTS of kangaroo time! This helps a TON with baby's breathing. Once the hospital let me do kangaroo care whenever I wanted, my LO's breathing improved significantly. Also, my LO always had a fast heartbeat so we didn't start feedings with him until he was around 36 weeks. I feel like this helped a lot because by then he had his breathing down really well, and wasn't still trying to figure out how to breathe while additionally figuring out how to eat. My LO excelled when he could work on one thing at a time.

Just be patient. It sounds like you have a little fighter and from the little information I've gathered from your post, I highly doubt your LO will be coming home on oxygen. You can also talk to your doctor about it. Our NICU rarely had babies go home on oxygen. Hang in there mama.

A few hours after my post the dr seeing her told us she would most likely come home on oxygen. But I talked to the dr that normally sees her and he feels it's way to early to say for sure but does not think she will.

We started putting her to the breast on Saturday once a day. And once she latches and can maintain a suck we'll start replacing her tube feeds. She does really well though. She doesn't desat during this at all even when she's latched. She also doesn't desat during baths. It's kind of odd I think!

Oh and we love kangaroo care!

 

[Jes.shortcake]

A few hours after my post the dr seeing her told us she would most likely come home on oxygen. But I talked to the dr that normally sees her and he feels it's way to early to say for sure but does not think she will.

Omg don't you hate that? That was our main issue with the doctors. It was like they all thought they were right and wanted to do things their way. One doctor said my baby had CMPI and took him off reflux formula and put him on nutramigen, then a few days later another doctor said no he didn't have CMPI and his reflux was bad and put him back on Enfamil AR. Then he got switched back and they heard an earful from my husband. Doctors need to be on the same page when dealing with our precious LOs.

 

[BabyMaybe917]

We've had similar issues with thrm having differing opinions on how to treat. I do trust the drs and they have been great (some better than others) but if something doesn't make sense I ask questions. When I see a dr one day and they explain they are doing x for these reasons and the next day another comes in and says we're not doing x because of these reasons... what the heck.

 

[jandksmommy]

My little gal came home on oxygen. She came off it during the day at 8 months old (still needed it at night) but then got RSV at 15 months and is back on O2 24 hours a day. I have been stressing so much about her lungs but after talking to a few other moms on here, I feel so much better about it. Her lungs will eventually heal and will no longer need to extra support and so will your little ones . It is so much better for them to have the extra support while they heal so that their lungs do not need to work as hard.