Once home, we were supposed to be able to give him gravity feeds, in which you put the formula into a 60mL syringe and let it flow into him with the help of gravity, which occurs relatively quickly. As has been the case, we always offer the bottle first. He was doing quite a bit of vomiting on the NG tube, but the hope was that that was simply because the NG tube holds the "flaps" that normally close to prevent that sort of thing open. However, even in the hospital, Pip wasn't handling feeds any faster than 2oz. over 30 minutes via pump delivery system, so we were sent home on 2oz. over 30 minutes every 2 hours. We were gradually able to increase that to about 3oz. at a rate of 20 minutes. He still didn't handle a gravity feed.
|Pip "eating" his dinner with the family.|
However, the vomiting still hasn't stopped. In fact, last week was really terrible in that department. We were at the GI again yesterday, where we learned that, once again, he isn't growing. He's now officially "failure to thrive." We've made some changes to the caloric density of his formula and the delivery rate of his feeds. If we can't get him growing and thriving in the next two weeks, we're looking at a hospital admission.
|Getting all cleaned up after vomiting makes everyone feel better.|
If you know me, you know that I struggle with borrowing trouble, and right now I'm having a hard time with that. If we can't get weight on him, he'll be in the hospital. I knew something needed to change, but I didn't realize we were to that point. I'm working so hard, praying so hard, doing everything I can do, and yet we're here. I have to leave it at the feet of God. He knows. He sees. He loves Pip and the rest of us.
The kids have seen me cry a lot. And pray a lot. And I'm seeing the fruit of that. Now, if they see me melting down because the pump is having a problem, or Pip is having a problem, or I'm just utterly exhausted, I often get a hand on the arm from Mercy or Gilead and hear "Mommy, we should pray about that." From the mouths of babes...
And Pip isn't failing to thrive in every way. He is making gains in his gross motor skills. A month ago, this would have been impossible for him.
He's still a long way from "typical" 10.5 month skills like scooting, crawling, or cruising, but for him this is huge, and cause for rejoicing.
So, FPIES continues to be hard. Really hard. But God continues to be good.