2 months old

Lalo is celebrating his 2 month birthday today. For his present, his drs and nurses decided he didn't need the nasal cannulas anymore. So since around 9 this morning he has been breathing on his own without any extra oxygen support and he has been doing great without it. I'm sure he enjoys not have those in his nose and may explain why he has been sleeping like a rock this morning.

The upper GI from last week didn't give us much info. One good thing is that it did not show reflux which is typically an issue with cdh babies. It showed poor motility - how quickly food moves through him, which is probably mostly caused by his anatomy and the surgery, but also enhanced because of the narcotics he is on. The opening from his stomach is also on the bigger end of normal, but they're aren't sure that that is a contributing factor. Right now he is on 11 cc's an hour with plans to go up to 12 tonight, so he still has a way to go with this.

We had a meeting with the doctors on Friday, mostly for the purpose of discussing his MRI and his neuro-development. I wont go into much detail right now, but it was pretty overwhelming to think of how many hurdles Lalo will have in his life after all that he has already been through. However, we also know how strong he is based on all that he has already overcome. We did discuss our path out of here. To get out of Hopkins he will need to get up to full feeds. Then they will be able to transfer him to a less intensive rehab hospital (hopefully a little closer to home). To get out of that hospital he will need to be entirely weaned off narcotics. At the rehab hospital we will be able to work on doing a feeding schedule (not just continuous) and hopefully work on oral feeds in hopes of getting rid of the feeding tube.

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