My poor little baby :(

[sunnylove]

My son was born 9 days ago at 26 weeks, 3 days. He weighed 2lbs, 7ozs and has done very well. He was only on the ventilator about 2 days before he skipped over cpap and went to high flow oxygen. He's been on that for about a week now and has been doing well on it until about a day or two ago. He's had more apnea episodes and they did an x-ray on his lungs to see that they are more closed than they would like.

So he will be going onto cpap today. I was so grateful and hopeful that he was doing so good and now I feel like he's taken a step back. I know this is normal with preemies, especially early ones like him, and I know we are so blessed because he hasn't had brain bleeds, or needed surgeries or had any real issues except apnea and the occasional brady. But I guess I'm looking for encouragement.

Did you little one take steps backwards in the NICU and make it out fine??

 

[25weeker]

My daughter had a few setbacks in neonatal. She had an infection at 4 weeks old which resulted in her being ventilated again and at 10 weeks old she had a cold plus got her first set of jabs which resulted with her back in cpap for a day. She came home just before her due date and so far to date she is developing on par with her peers with the exception of weight and height but one consultant said he thinks it will be closer to 5 before she catches up.

It's hard not to feel down when they have a setback and at the time if feels like ages but its usually less than a week.

Cpap just gives him some more pressure that high flow does so he doesn't have to work as hard. He is still breathing on his own and doing very well for his gestation.

Xx

 

[Srrme]

CPAP is not necessarily a bad thing. It's going to help him a lot, and give him time to rest so his lungs can develop properly. He seems to be doing really well for his gestation as is!

It's VERY normal for a preemie to take one, two, three, even more step backs while in the NICU, and it it no way means he won't make it out okay.

 

[Dinah93]

When DD was born I managed to convince myself she'd be the miracle preemie, the one who had the smoothest ride imaginable, only forward steps till she came home. So it hit me like a train when she was on room air for the first day, and by day 4 she was on a vent. She was on the vent for 10 days, then straight to low flow for a day, then room air, then she went back to the vent as she had a pneumothorax, and we ended up going back and forth between room air and a vent for 6 weeks, and 4 pneumothorax, before she ended up having to have surgery to remove half her left lung - not something I even remotely prepared for. Despite how well she started off she ended up on oxygen for 7 months in total, but taking a long term view today at 15 months old she's a healthy, happy 1 year old, with sats of 99% in room air. It's scary when they go back and forth, but don't panic unless the doctors are.

 

[sunnylove]

Thanks, ladies. Baby finally got switched to the nasal cannula vent 2 days ago, and I'm glad he's doing better. He is breathing over the vent! But has had some belly swelling because of the extra pressure, but they lowered it so he is doing good. Hoping he can get off the nasal cannula soon though!

 

[rbourre]

My daughter was on CPAP (just room air) for 3 weeks. They tried to take it off her twice and she had to go back on. She decided when she was ready and pulled it off and it stayed off.

Hope everything is going good.

 

[Ice Cold Cube]

Our set back was when Ella aspirated some milk into her lungs. Prior that that she's been off all oxygen but had to go back on it, and have antibiotics etc, and it took several weeks for her to come off completely. We had weeks of what felt like no progress at all - it felt like groundhog day. We felt scared to touch her because she would desat all the time. And then one day she just didn't need it any more and we got out very soon after that.

Laura x

 

[jandksmommy]

Your little one is doing so well! Step back are part of the preemie experience, even though they totally suck. The little extra help he is getting know will make life so much easier for him later as his lungs will not have to work as hard while they mature.

I am so happy to hear how well he is doing though!!! No brain bleeds, no bowel or valve surgeries!! He is a rockstar!

 

[sunnylove]

Yes! So far, so good, we are very blessed! He had another set back tonight though, but not with his lungs. They've been pulling some old blood up from his stomach (which still has a lot of air in it due to the nasal cannula). The blood cultures are still in progress, but his white/red blood counts are good, so they think it's possibly reflux issues irritating his lining. They were doing x-rays (doctor said they were "iffy" looking), hooking up an IV, drawing blood, etc for 2 hours straight. He did amazing through it all though and never had a desat. But I really don't know what it is, because typically with reflux the baby doesn't tolerate his food well, but our baby has been tolerating his milk just fine.

His oxygen has been great though, since switching to the nasal cannula. He hasn't had any apnea episodes, and yesterday when I held him he was completely on room air, so he's doing good. Just hope this stomach thing clears up now and that it's not a more serious condition.