Today we took Ben to see his pediatrician for a between-well-child-tube-feed-follow-up visit. I scheduled this one because it seemed to us that his weight had plateaued after his surgery. Overall, Ben has been doing well and tolerating his feeds. We have slowed the nighttime rate down a bit because his MIC-KEY tube seems too tight and leaks a lot again these days. Tomorrow we see the nurse practitioner at the surgeon’s office to see if she thinks he needs a longer tube. Our bolus feeds are now up to 2 and a half ounces at a time which is wonderful!
Ben was 10 lbs 8.5 oz completely undressed! He is at about the 50th percentile for weight for baby boys with CdLS, so he is back on track. Our pediatrician says that the formula that they use to calculate feed requirements in tube fed kids might not apply at all to kids with CdLS, so he says we can just keep feeding Ben what he tolerates and make sure his weight gain is appropriate. Sounds good to me!
I think we’ll be moving up to Size 2 diapers in the very near future. 🙂
Ben got his 3rd Synagis shot and his 2nd flu shot today and is a little fussy this afternoon.
Last night Isaac asked if Ben could stay with him in his bed while he went to sleep. After a very few minutes, this is what they looked like: