It is a sit and sob in the kitchen kind of morning. I have largely been able to keep myself off the ledge as we navigate our new feeding schedule, the g-tube, and all it entails. I have been able to tell myself he will take what he takes by mouth, and it is what it is.
But it seems like he is perpetually taking less and less by mouth. The hope was having the NG out of the back of his throat would motivate him to eat more by mouth, not less. The hope of starting the overnight feed and doing fewer bottles during the day is he would have more energy to eat, not less.
And I can’t figure out why. This is the piece that makes me break down and cry. If I don’t know for sure why he isn’t wanting to eat by mouth – teething/mouth pain, energy/heart-related, pure stubbornness/lack of desire – I can’t figure out how to help him.
We do see our GI doctor next week. We are going into ChildServe for a feeding clinic evaluation, but they didn’t have a date until August. I am taking all the steps I know to take to help him with this. I literally don’t know what else to do, but it makes me worry, watching his oral feedings decrease.
He keeps teaching me this same lesson over and over again: That there is a LOT in this world I simply can’t control. No matter how much I wish I could, no matter how difficult it is for me that I can’t….I have to figure out how to come to a place of peace with this. Feeding has been one of the greatest emotional difficulties of his life thus far, for me. I have to locate my peace, somehow.