Vent question (especially for moms of micropreemies)

daphne814

How long was your LO on an oscillating ventilator?  My DS is 3 weeks 1 day old, and he's only been OFF this vent for 3 days in his life.  He was put on a CPAP at about 1.5 weeks, but he had to have a procedure for a bowel perf and he needed to be put back on the oscillating vent after that and hasn't been able to wean off it yet.  That was 11 days ago.  Is this something I should be concerned about?  Did your LO have any long term effects from the vent?  They had to bag him the other night and then put in a smaller tube the other night because his vocal cords are getting swollen.  I ask the nurses about it, and there's no way to tell now what his long term effects will be, but I'd love to hear some real life stories just to get an idea.  Thanks so much.

adrielegorburu

DD was extremely micro - 22w 5 d so we were on a vent for a total of 6 weeks - 2 and a half on an oscillating vent and the rest on a conventional vent. We were very lucky that she is really healthy for a baby with her medical history. We do have some chronic lung issues, she has some allergies and possibly will be asthmatic but all in all she does great. We didnt go home on any oxygen and her lungs were perfect until she was 6 months adjusted and started daycare and got sick, now shes like constantly sick and having breathing treatments but not anything any other termie could have

DrRx

Adalyn was on a conventional vent for about 3 weeks, on an oscillator for 2-3 days, and then on CPAP for another 2.5 weeks.  She has been on nasal cannulas for about 5 weeks so far.  

She will probably have some CLD issues, but hopefully she will be ale to outgrow them as she gets older and builds new lung tissue.  We are also fortunate that she won't be in daycare as DH and I can work opposite days and stay home with her.  

AlwaysSunny925

My boys were born at 25w2d.  Ryan was off the vent in two weeks.  Aiden, on the other hand, was extubated on his second day of life.  However, this did not last long at all (maybe a day) and he was put back on the vent. 

He was on the oscillator for a very, very long time.  At this point I don't really know because we had so much going on between both boys that I didn't think to ask about the type of vent.  He spent 8 total weeks intubated and got two rounds of steroids for lung development.  It took probably five tries to get him on cpap and then he was on that for a while too.  Later he was on nasal cannula and almost got sent home on oxygen.  Two days before discharge they trialed him off oxygen and he did well. 

Upon discharge we were told that he has BPD due to being on the vent so long.  The good thing is that lung tissue regenerates so his lungs will eventually heal.  A side effect that we notice is his voice.  It is hoarse because his vocal chords were damaged since he was intubated so long.  In the NICU he would cry and we wouldn't hear anything.  We were nervous and the neos tested him vocal chords and said they work, they just need time to heal.  Since he's been home his voice has gotten a lot better and louder.  I've read that it can take 6 months for vocal chords to heal totally.

I know it's scary to see your child intubated for so long.  That was my biggest worry when we were in the NICU.  Even with all the other, probably more serious issues we were facing, the fact that he couldn't get off the vent was eating away at me.  He will graduate in time.  As he grows his lungs will get stronger and you will walk into that room to find your baby off the vent.  Hugs to you.

ETA:  Also, Aiden was bagged too many times to count.  There was a point where he was being bagged at least once a day.  This lasted for a week or two. 

lemen99

Andrew was on a vent for about a week and an oscillating vent for about a week ballpark.  He did not come home on oxygen (he came home at 43 weeks gestational age, 3 weeks past his due date) and he has had no lung issues to date.  He was a 26-week preemie and he is almost 3 1/2 years old now.

Lots of prayers. It's so hard.

ijustcantthinkrightnow

DD was on the conventional vent for almost 2 months and probably half of that time on the ocsillator. I hated hearing it but the ocsillator is actually easier on their bodies. She need steroids to be weened the first time. Was on low flow cannula for over a month, had surgery and took 2 weeks to get her off the vent again. 

She too had swelling issues which resulted in using steroids.

She is now a thriving and rambunctious one year old. She does has some delays (mostly feeding related due to her Celft Palate and strong oral aversions). But is still within her adjusted age and even actual age for most of her milestones. 

njdcgirl

My son was born 23w5d.  He was on the vent for just over a month, with about the first week on the oscillator.  Like pp'ers I was so worried about him getting off the vent, and oxygen in general.  He had many, many instances of needing to be bagged over his 4.5 month NICU stay.  He did a course of decadron (steriods) to help get him off the vent.  He stayed on CPAP for another month, then the nasal canula for another 2 months.  We thought he was coming home on o2, but then his stay was extended b/c of a NEC scare, which bought him another 3 weeks and they were able to wean him.  He ended up coming home on no oxygen.

As for long term effects, we are very lucky that he hasn't had many.  We see a pulmonologist every 6 months for follow up, and he has a nebulizer for when he gets sick in case he starts weazing.  He's only needed a few times.  We did keep him home with a nanny once I went back to work, so he only had one cold in his first year.  He's been in daycare since Sept (14 mos) and has been sick many times since then, but so far none have gone to his lungs, thankfully.

It's hard with lungs, because they just really need time to grow (and heal) and that can be a long and frustrating process.  Hope your LO makes some good progress soon towards getting off the vent! 

HEmery

Walker was on the vent from October until the beginning of January. He was never on the oscillator. At the first hospital they guaranteed that he would come home on oxygen but he was on CPAP for 2 week and then nasal cannula for about 1-2 months and no he's on room air. We're in the process of getting discharged and he won't be coming on oxygen.

I guess you could say that his ROP was caused by being on the vent but it's been corrected with Avastin injections and honestly between being so early and the vent, it's too hard to tell if that's because of one or the other.

It's hard but you have to remember, every preemie is different. 

daphne814

Thank you for all of the responses.  As it turns out, this was a timely question because the head of the NICU came to talk to me today and they decided to give Ryan steroids to try to get him off the vent.  Not just because his lungs are having trouble, but because it's affecting his kidney funtion which in turn is affecting his nutrition.  So, they administered hydrocortisone starting this afternoon, and they will try that out for 48 hours.  If he improves, they will continue with that for around 2 weeks, lessening the dose as time goes by.  If it doesn't work within 48 hours then they will give him decadron on Saturday.  I'm praying that this first steroid works because the doctor freaked me out a little, but I'm trying really hard to just ride this out and stay positive!

MrsLee22

Both my babies spent about 7 weeks on the vents, and one of those weeks was on the oscillator for Grayson. I HATED that thing - it was awful to watch and G HATED it and had to be paralyzed while we was on it - but it really did make a HUGE difference in his lungs. They both needed the steroids to come off the vents and spent a couple days on CPAP, and came home on cannulas and needed O2 until abut 2 months past their due date.

They just turned 1 though, and they are pretty awesome We haven't had any long-term affects that weren't generic preemie problems.

Hang in there mama!

AVA0908

Honestly, it was so long ago that I don't remember exactly, but it was definitely more than 11 days. I would say about a total of 2-2.5 months out of the 4 months we were in the NICU. I think that this influenced his ROP and he had to have eye surgery for it eventually-but that is rare. He went home on oxygen and was on it for 2 months (although doctors predicted up to a year!).

OscarQ

My son was on a vent for just over 9 weeks (66 days) and on an Oscillator (or Jet - he went back and forth all the time) for the first 20 days.  He then spent a week on CPAP, hung out on High Flow for awhile and dragged his butt at getting off wall O2.  He finally went to room air on Day 121 and was discharged (with only an apnea monitor) on Day 128.  

I got the scary steroid lecture a few times.  I don't think they ended up using steroids on him but they might have - sorry, I can't remember and don't have his full records to check.  The good news is that every time the neo gave me the scary steroid lecture she couched it with "but this was based on studies done 20 years ago and we don't use steroids that way anymore".  So why give the scary lecture?  I don't know!

Good luck to you!