Baby off oxygen and then back on it.

[Tallulahs09]

Hi all,

My baby boy was born 2 weeks ago at 32 weeks + 5 days. He was on cpap for a few days and then just on oxygen, never any higher than 0.05.

Last week he came off his oxygen completely and was doing great for a few days. Then he suddenly had to go back on it. It's never any higher than 0.04 and usually manages to be at 0.01 other than after a feed. He was tube fed but now managing to take bottles.

Doctors don't seem concerned at all but I can't help wonder why he was ok for days and then suddenly the set back. Has anyone else ever had this? Is it normal for it to happen?

It happened to us.

We were in for a long time (25weeker) and had a few setbacks with breathing. It took quite a few attempts to get to each new piece of kit. And a few times where the flow had to be put up again. Most people had the same.

Then my dd was off entirely for a few weeks. Just before going home she failed a more detailed oxygen test and had to go back on for coming home (home oxygen is much less likely for your child though).

It often coincided with either an illness or something taking more effort. In this case maybe the bottle feeding is taking a lot of work and they want to make it easier for him? They sent us home on oxygen just to help growth and fighting winter bugs as my dd was so tiny. It’s quite normal, it just makes life easier for the baby so they can focus on growing and feeding.

Thank you, I was thinking could he maybe have some kind of illness but they don't seem to feel the need to be checking for anything so maybe it is as you say the feeding using up all his energy and making him need a little extra help. They just don't really explain why anything happens so it worries me.

It has been mentioned about going home on oxygen but they said they want to monitor to try and determine if the oxygen is going to be needed a little more long term. As if it's only something he's going to need for a very short time then it's not worth sending him home on it, when he could just stay that little bit longer. It's the only thing stopping him coming home now, well that and having to be 35 weeks but he will be 35 weeks tomorrow.

It’s hard waiting, those last few days seem to drag on, always another delay in my experience. And if they have to order home oxygen it’s a couple of days more.

But best to wait until they are sure. If you get home then go back in it’s into paediatric ward so all different again. It was hard at the time but looking back it was right to delay for us. Going home on oxygen isn’t a big deal imo, it’s a bit of a faff but it helps them grow and fight bugs in the winter months.

Hope you get him home soon.

It's just all so confusing as one nurse or doctor says one thing and then another something else. We've now been told they wouldn't send him home on oxygen until he is 38 weeks when initially they said 35. I think that's the most frustrating thing, one says one thing and another different so we have no clue really what is going on.

I'm just going to take it one day at a time from now on and not get my hopes up of anything until I know for certain it's happening.

That's reassuring to hear from someone who has had a baby home on oxygen though that it's not really a big deal. So thank you, I won't worry so much if that is what ends up happening at some point x

Agree with pp, feeding takes SO much effort and is so hard to do along with breathing. And breathing is hard work too. So they take them off, they cope for a bit then get worn out and can't quite manage it.

If you do come home on O2, it can be a bit daunting but we've been doing it for 5 1/2 years and you do get used to it, we as the tube feeds if they need to come home with that in.

Good luck

Thank you both. My daughter came home with tube feeds and I remember at the time thinking that was daunting but soon didn't even give it a thought any more so I'm sure it will be the same with the oxygen. It's been 11 years since I've done this so all seems so new again.

@Tallulahs09 Hi Op this happened with my DS he was in NICU for nearly 6 weeks born at 31+4 he went from the ventilator to c pap to low flow oxygen which slowly got lowered to 0.01 which he was in for a while. He got sent down to the last room to prepare for going home and after a further detailed check from the consultant they notices his oxygen levels kept dipping to around 89. No particular reason for it but they moved him from being fully clothed in a cot back to the incubator all wired up. I was so worried and it felt like a big set back but I was reassured that it happens a lot and was nothing to worry about. The nurse said we expect so much from them already and they aren't even supposed to be here yet 😊 .. and now my gorgeous 3lb 7 boy is flat out on the sofa sleeping currently 5 months old. Your LO will be gone soon try not to worry too much, easier said than done though I know xx

@RainbowL2020 thank you. My baby Is currently on the more detailed test now after managing without any oxygen for the last 48 hours. I'm not convinced he will pass the test as he does have dips down to the 80s so I'm expecting them to say he's not quite ready for home yet. They are saying if he passes he will be home but I'm not getting my hopes up.
That's reassuring though to know what you went through with your little one and to know all is good now 😊

@Tallulahs09 aw fingers crossed he will pass 🥰 I'm sure he will be home soon. My baby took ages getting used to feeding without the tube which I reckon was tiring him out but as soon as he'd done a full 24 hours without the tube they rang me out of the blue and said he was coming home the next morning! It's surprising how fast they come on once they're at a certain stage. But yes no problems what so ever in that sense since coming home 😃 x

Well baby failed first oxygen test but then passed yesterday and was allowed home. Was a lovely birthday present for me
So we've made it home without any oxygen. Only thing concerning me is how noisy he is when sleeping. Sounds like he's constantly grunting or making a squeaky type noise.

@Tallulahs09 aww that's great! So pleased he is home 🥰 my DS grunted quite a bit and sounded sort of wheezy and we later found out that he had bad reflux and still does but its a lot more manageable, although some babies just do this anyway and it's normal for them but if you have any concerns at all just ring the hospital because I'm assuming you'll have a certain time frame for open access to get him checked over if you need some reassurance 😊 I know how you feel because I was a nervous wreck with mine (and still am but a lot better) I bought a breathing monitor that attaches to his nappy that he still uses now every night to give me some peace of mind overnight as I was just constantly staring at him and not sleeping! ❤️ x

Great news OP. Keep him close when he sleeps and trust your instincts. So glad he’s home, well done.

Thank you both.

Baby is still very grunty and sounds a little wheezy so going to get checked out in case he is suffering with reflux. Other wise doing great though 😊

@Tallulahs09 glad to hear OP 😁 x