Nearly there!

Our little man has his repeat barium swallow study on Friday. This test shows if there is any leaking around his fistula repair. Thankfully he passed, and that meant he could start oral feedings

Now, I’ve got to be honest. My husband and I had unrealistic expectations for how he would take to the bottle. As vigorously as he had been sucking his pacifier, and as hungry as he had been– we just expected him to suck his bottle down. So, I won’t lie– I was disappointed when he hardly took any bottle at all, especially because surgery started him off with 5ml (a teaspoon). They will raise how much he gets as he tolerates it and learns to nurse.

Now that we’ve had a few days to adjust our thinking I’ve come to accept that it’s just going to take time. We aren’t going to rush this, or be disappointed anymore. He has overcome so much, and this is his last hurdle before we go home! When we took time to remember that babies learn to suck in the first 3 days of life, and our son was 13 days old before he got a bottle, it of course makes sense that he needs some time to learn.

Saturday his nurse got him to take his full 5ml, but he’s still not doing it as ‘gracefully’ as we’d like. Thankfully he did take it, because surgery then felt comfortable removing the chest tube that was positioned near his repair (it was there to pull anything out that leaked out around his repair). They took out his chest tube and that was huge for us! Now we can dress him, and hold him without the fear of hurting him or displacing the tube. We were elated.

We’ve spent the last two days cuddling him, and enjoying being with our son. We don’t want to put him down! We’ve seen some improvement with his bottle since he started them 3 days ago, but we’ve still got a ways to go.

Once he is able to take enough orally that they feel comfortable enough discontinued go his TPN (his IV nutrition), then he needs to be consistently gaining weight. Once he has that it’s just a few things before we go home: can he sit in his car seat for the length of time it takes to get home without his vitals changing, he can transition to sleeping in a crib, and a few other small things.

We would LOVE to be home tomorrow, but we’re really hoping to be home by Thanksgiving. C and I are missing home, and our dog– we’re staying in an extended stay hotel near the hospital, since home is 90 miles away. We don’t feel comfortable going home because it would mean not being at the hospital everyday, so for now we’re staying here.





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