Most likely coming home on oxygen :/

GatorNurse

On rounds this morning, the neo told me that since Caroline refuses to wean, she was switching her to home oxygen settings (1/4 liter at 100%) and that we are planning to discharge her with O2. Gah. We did NOT want this. We know it could be so much worse but still, it sucks that nothing about this whole experience is normal - we just wanted to be able to bundle our baby up and go home, without a million monitors and tanks in tow. I'm just frustrated. She also pulled her NG tube and said we're going to see how she p.o. feeds over the next 24 hours. So, of course, the kid took only 20ml out of 54ml.

I feel so overwhelmed, thinking about how difficult it seems like it'll be to have a baby on oxygen. Where will we put the concentrator? How will we ever go ANYWHERE? What am I going to do when I have to go back to work? Why are they sending us with a monitor if they aren't even going to be monitoring her oxygen sat since thats the entire reason that we are in this predicament in the FIRST place?!  I just want to cry.

 

Mrs. Alice

Sorry mama.  I'm sure it all sounds overwhelming right now.  I completely understand the feeling of, just wanting to have some normalcy at home.  They were threatening to send home one of my little guys home with oxygen too.  It wasn't until about a week before he was discharged that he started improving and they realized that he was doing just as good with the oxygen as he was without it.  They also did a CXR and gave him a couple doses of lasix to get a little fluid off his lungs. In our case, he was having the desats usually when he was nursing or taking a bottle.  We had apnea monitors for 3 months (the last 1.5 months were just night time use).  They were a pain but I was just so happy to have them home we adjusted to it.  I'm sure some other home oxygen mamas can give you some advice.  Hang in there, those last few weeks are really tough!

MommynTeacher

I'm sorry...Just remember that you will finally have her home with you and try to focus on how good that will feel. (I know, easier said than done) I hope that she will be stable enough very soon and won't need all of the equiptment. Did they say how long they anticipate her being on the oxygen?  

bhilyer

So sorry!  Having a preemie takes away all the "normal" occasions and milestones. I won't say it gets easier, but as time passes you discover that's just the way it is.

As for the oxygen -- it's not that bad.  One of my guys is still on oxygen at home.  We have a concentrator at home.  It's in the corner and I rarely notice it any more. You'll get an extension set and you'll likely be able to move 20 ft in any direction.  As for travel, we have small 8 lb tanks.  They are easy to carry and fit in the stroller basket.

As for the feedings - does DD have issues with eating?  My little guy's BPD contributes to his eating problems.  On a good day, he breathes about 60 times per minute.  He can drink from a bottle, but it's hard work to coordinate his SSB reflex.

I know you're ready to have DD home and anxious about the oxygen.  From experience, I'll tell you feedings have been more of an issue than the oxygen.  If you don't feel like she's ready to come home because of feeding issues, SPEAK UP!  Ask for speech and OT to come work with her on bottle feeds.

I was so ready to have DS home after 4.5 months, I brushed off the neos mention of a g-tube.  DS gained less than 2 pounds in 3 months and ended up with a FTT diagnosis and had a g-tube placed at the end of November. 

If you have any questions, please feel free to PM me or find me on FB. 

AlwaysSunny925

Sorry you are dealing with this.  We just found out that A will most likely be coming home on oxygen as well.  While it seems ovewhelming, I feel it's the best decision.  He needs to be at home and I truly believe having him around us will help him grow faster and thus giving his lungs a chance to improve much more.  In terms of going anywhere, I figure we won't be going out much anyway until RSV season is over.  Good luck and I hope you make peace with this new soon.  You can do it mama!

Kiki11

Having a preemie tends to rob you of most of the 'normal' baby experiences.  But bringing a baby home on oxygen is really not that bad.  My son came home on oxygen in December 2012 after 4 months in the NICU.  Different medical supply companies do things differently and I have hardly ever heard of two different families having identical set-ups.  Sometimes people get a concentrator, sometimes compressed oxygen tanks, sometimes liquid oxygen, etc.  We started out with liquid oxygen, which was really easy to use.  We had two big tanks and one small tank with a strap on it that we could carry around the house.  It held enough liquid oxygen for around 8 hours of continuous use and we could easily refill it from the big tanks.  When he was weaned to a lower oxygen setting, we were switched to compressed oxygen.  He had a big tank next to his crib for sleeping and we would get roughly 1 small tank per day.  It would usually last at least one whole day, frequently more like 1 1/2 days.  It came with a bag that we would just carry over our shoulder or stick in the stroller if we were going out of the house.  We adapted very quickly.  Not hard to use at all.  My son is still on oxygen, but only when he is asleep now.  So we don't have to carry the tank all over the house with us anymore.  We just have to have one handy if he happens to fall asleep when we're out and about.  You'll do fine, really.  And I'm pretty sure that every baby that goes home on oxygen also gets sent home with a pulse oximeter to monitor their oxygen saturation.  We only ever used ours when the little guy is sleeping and/or nobody was right with him.  So when he was first home from the NICU, we wouldn't use it unless we were asleep basically since he was almost always in one of our arms.  Once he started taking regular naps we would hook him up anytime he was asleep so we could get some stuff done around the house.  You'll adapt.  Hang in there!

SushiNoMore

We didn't have the full experience of oxygen all the time, but my son came home on oxygen with feedings.  As the others have said, it wasn't that bad.  I totally get where your head is right now, though.  You just want to be DONE WITH THE NICU.  I totally 100% get that.

Our son was also on an apnea monitor for 5 months, so we had that extra annoying device, too.

All that being said, you get used to it.  Our son came home with about a month left in flu season, so we were quarantined for about 8 weeks (our pedi was extra conservative with our quarantine).  So, we weren't able to leave anyway.  Since it's flu season right now, I have a feeling you'll be sticking around your house for a few months, oxygen or not.  That will probably make the oxygen easier to deal with.

Hugs to you!  I get where you're coming from, and I hope it's a very short-term thing.  I agree with the post above that your baby will likely thrive at home (our son really did), so I think coming home on oxygen is likely the right move.  Good luck!

kelkel09

I am so sorry. Just think positively that it means you will get to have your DD home with you! You will figure out how to make it work with the oxygen at home.

Fancy3Face

My son, born @ 36w was on home o2 for 7w.  It can get old, but having our babies home with us was just amazing.  You get used to having the tanks and they have a home tank (usually on rollers) and a travel tank for getting out of the house.  Our travel tank came with a back pack and it was super easy to transport. 

How exciting that your baby is coming home soon!!!

shanlubey

Sam came home one day before his due date EBF and on O2. He couldn't handle bottle feeding and thrived at the breast. It was hard to BF and have all that equipment around. I weaned from BFing and he was still on O2. We got him weaned off of day time O2 in early August and off it completely, even bedtime, by mid August. 

The O2 made all the difference with us. He was on 1/8L so we could bring a tank in a carry bag, like a messenger and we stuck his pulse ox in my diaper bag. To be honest, it was harder to discontinue the use of the pulse ox. He's been off oxygen since August and I continued to use the pulse ox at night time through January 10. Don't judge me, haha. I was so afraid he couldn't breathe.

It was cumbersome, but we learned to adapt. It was just so worth it to have him with us. Had we waited until he was ready, we wouldn't have been home until he was 7 months old.