Yesterday Veronica came within inches (well, milliliters really) of getting her feeding tube removed. She needs to take all eight feeds by mouth (either breastfeeding or by bottle) over 24 hours. She managed seven and a half of her eight feeds, but couldn’t quite stay awake for her last one. So close.
Today, however, we able to get her switched to more of an “on demand” feeding schedule, which should help her out greatly. She has done very well with her feeds, and the doctor has given the okay to let her have less on some feeds, as long as she takes at least 55 ml (out of the 60 she should be having) every other feeding. That should prove much easier for her, as will being able to feed her when she wakes up and is hungry, rather than having to stick to the every three hours schedule.
So far today, she has not needed the tube for any feedings — in fact, the nurse has removed it — and they are starting to get her ready to come home. In fact, she may be here as early as Tuesday (although John and I think that may be a little too optimistic). Tonight, they will give her the car seat test — she needs to be able to sit in the car seat for 2 hours without having any breathing or heart rate problems before she can come home.
The doctor also has ordered her off all her medication (really just the Prevacid for reflux) and has stopped fortifying her bottles to prepare her for a 12-hour test (we can never remember what it’s called) they’ll likely perform on Monday or Tuesday. They insert a monitor (like her feeding tube) to near her stomach and plug it in to a laptop. They’ll then record everything from her heart and respiration rates to whether she is still having reflux problems.
If she has any bradys or apnea episodes, they may decide she isn’t ready to come home. Or, they may decide she can come home either on medication or with a monitor. This is the part we’re not sure she’ll pass because she still tends to have bradys while she is eating (because she forgets to breathe). But if it’s only happening while she eats, maybe they’ll let her come home on a monitor. We’ll just have to wait and see.
One thing going in her favor — the NICU is getting very crowded again, and they could use her bed for another baby.
Colin also is getting closer to his next milestone — being able to try oral feedings. He has continued to gain weight, despite the infection, and is up to 2 pounds 12 ounces now. Tomorrow is his last day on the antibiotics, so he should be able to get his IV out. We should be ready to switch his feedings from the pump (over a half hour) to the gravity feedings (through his feeding tube). If he does well with those and continues to gain weight, we should then be able to try nursing and a bottle.
Unfortunately, we don’t seem to be any closer to getting Colin off the oxygen. He continues to desat periodically, although not as bad as the day they decided to start him on antibiotics, and certainly not as often. I am happy the episodes are getting better, but John is very worried that the effects of the steroids are wearing off and that we’re sliding backwards on lung function for Colin.
I certainly hope that isn’t the case, and I don’t know why that doesn’t have me more worried right now, because it would be a huge blow to our progress with our little guy. I don’t know if I’m just getting some kind of positive vibe about it, or if I’m just too tired to be able to contemplate the possibility. Regardless, right now I am choosing to acknowledge the possibility while also refusing to give it any credibility.
So far today, she has not needed the tube for any feedings — in fact, the nurse has removed it — and they are starting to get her ready to come home. In fact, she may be here as early as Tuesday (although John and I think that may be a little too optimistic). Tonight, they will give her the car seat test — she needs to be able to sit in the car seat for 2 hours without having any breathing or heart rate problems before she can come home.
The doctor also has ordered her off all her medication (really just the Prevacid for reflux) and has stopped fortifying her bottles to prepare her for a 12-hour test (we can never remember what it’s called) they’ll likely perform on Monday or Tuesday. They insert a monitor (like her feeding tube) to near her stomach and plug it in to a laptop. They’ll then record everything from her heart and respiration rates to whether she is still having reflux problems.
If she has any bradys or apnea episodes, they may decide she isn’t ready to come home. Or, they may decide she can come home either on medication or with a monitor. This is the part we’re not sure she’ll pass because she still tends to have bradys while she is eating (because she forgets to breathe). But if it’s only happening while she eats, maybe they’ll let her come home on a monitor. We’ll just have to wait and see.
One thing going in her favor — the NICU is getting very crowded again, and they could use her bed for another baby.
Colin also is getting closer to his next milestone — being able to try oral feedings. He has continued to gain weight, despite the infection, and is up to 2 pounds 12 ounces now. Tomorrow is his last day on the antibiotics, so he should be able to get his IV out. We should be ready to switch his feedings from the pump (over a half hour) to the gravity feedings (through his feeding tube). If he does well with those and continues to gain weight, we should then be able to try nursing and a bottle.
Unfortunately, we don’t seem to be any closer to getting Colin off the oxygen. He continues to desat periodically, although not as bad as the day they decided to start him on antibiotics, and certainly not as often. I am happy the episodes are getting better, but John is very worried that the effects of the steroids are wearing off and that we’re sliding backwards on lung function for Colin.
I certainly hope that isn’t the case, and I don’t know why that doesn’t have me more worried right now, because it would be a huge blow to our progress with our little guy. I don’t know if I’m just getting some kind of positive vibe about it, or if I’m just too tired to be able to contemplate the possibility. Regardless, right now I am choosing to acknowledge the possibility while also refusing to give it any credibility.
Somehow, I don't recall any downside to educated positive thinking! Best vibes can't hurt! :-)
ReplyDeleteI agree with Deb^^ !!
ReplyDeleteStill keep them in our prayers.
Love to all of you.
XOXOXO for the kids
Yeah! Veronica is getting to the final countdown! We'll continue to keep good thoughts flowing to Colin so he can get off the oxygen. Susan G. (I'm a friend of Bill and Dotti's, and also a NICU nurse in St. Paul, MN)
ReplyDelete