Nacho Day

It was wonderful to spend the day together as a little family yesterday! And also, most importantly, it was nacho bar day in the hospital cafeteria! 

We had a really productive day. We had important conversations with the new care team about a path toward discharge. They’ve started fortifying his bottle feeds and mixing a cocktail of my breast milk and a high calorie formula. I can try to breastfeed 1-2 times a day, and whatever he gets from that is just a bonus! They’ll be closely monitoring his weight to make sure we’re getting the balance right. They want him to be gaining about 20-30 grams (2/3 to 1 oz) a day! 

We had a heart to heart about the feeding tube. They are happy to keep him here until he is eating completely by mouth, but at the rate that’s going it may be a while before he gets to that point. The nurse was really encouraging and patient and started educating us about how the tube works. By the end of the day, she had both of us place and use the feeding tube while she watched. 

So at some point, hopefully in the next week or so, we will probably take our little Cooper home, with a feeding tube. It’s obviously not what we would have imagined, but it’s not the worst thing ever. He will hopefully only need it for a short while, and he will be followed closely by the outpatient feeding tube clinic at PCH. 

For now, the plan is to make sure he’s tolerating his full feeds and gaining weight appropriately. And when they feel like he’s demonstrating that he’s on the right track and we’re equipped to fully care for him at home, they’ll release him into the wild!