When Can Joshua Go Home?

Here's the latest medical news on the Joshua front. 

Yesterday he had an echocardiogram to rule out a patent ductus arteriosus and other abnormalities that would explain his intermittent heart murmur. The blood flow through the heart changes drastically from the time in the womb connected to the umbilical cord to living in the outside world.  Sometimes certain valves don't close as they should after delivery.  The good news is Joshua does not have a problem with that.  Everything is normal except for an overriding SVC (superior vena cava). This is not a significant finding, and it just needs to be followed up with a repeat echo in a year. 

Today his direct bili (liver test) was elevated. The most likely culprit is being on TPN (total parenteral nutrition, through his PICC line) for so long and now being off it.  They are giving him a medication to help breakdown the bili to lower that, and they'll recheck in a week.  If it's still high then, they'll have to consult GI and run a bunch of tests.  If it normalizes (as they expect), it confirms their TPN theory, and we can just forget about it.

Joshua has his routine eye exam today.  A lot of preemies have eye issues, so everyone gets the screening exam.  His exam was completely normal for a preemie.  Yay!

Tonight his weight decreased by another 15 or so grams, to 1735 grams or 3 lbs 13 oz.  He had 3 nice stools in the three diaper changes before the weight, so they may have something to do with the lack of growth.  He is also new to just getting milk and not getting TPN, so I think it's just his body adjusting to the change.

A few people have asked us how they will decide when we'll go home, wondering if he has to reach a certain weight.  No, his weight doesn't matter.  We have been told it should be around his due date (May 7) plus/minus 2-3 wks. There a few criteria they look for:

1. He needs to maintain his own body temperature outside of the incubator.  Right now, he is almost doing that.  The heat is turned down very low, and the top is up, so he's exposed to room air.  They turn off the heat for large chunks of time, and he keeps a normal body temperature (tonight he was a little cool, so the heat is back on now).  Within a week, they may transition him to a regular "big boy" bassinet without any heat.

2.  He needs to breathe on his own but can be on low flow oxygen.  Now he's on high flow, so he needs to be weaned down to low flow.  The weaning is going very slowly since he tends to act up when they decrease his settings.  Living at this altitude with decreased oxygen isn't helping him out at all (and our home is even higher, about 7400 ft). Interestingly, one neonatologist told us when he did his fellowship in Boston, about 2% of the babies were discharged from the NICU on oxygen.  Here, about 98% are sent home on it.  That's a huge difference!

3.  He needs to be able to drink from a bottle or breast and show that he can gain weight on that regimen.  This is the one that takes the longest.  He sucks so hard on his pacifier, so I think he'll do well with this.  Before aggressively going after it, though, he needs to be weaned down to low flow oxygen.

Our next big goal is weaning Joshua off the high flow oxygen. Last night he had a few brady episodes (drop in heart rate), so they didn't want to wean any more today.  If he does well overnight, they'll wean him a little more tomorrow.