Today was a good, good day. When we walked into his room this morning we saw the pop topped off of his isolette (this means he’s regulating his temperature on his own!) and… no feeding tube! He had also gained some weight. These are all great signs and steps closer to us taking that sweet boy home. 

He’s tolerating his apple sauce and enzyme treatments so well. He even sticks out his little tongue when we have it on the spoon. We’re hoping it stays this way as we’ve heard sometimes it gets challenging for the kiddo and the parents, especially when you’re doing it before every feeding. Maddox also is getting salts supplemented in his diet which as you can imagine is difficult for an infant, let alone a premature newborn. We are experimenting with different methods, and we know we will find one that works (learn more about why this is important for CF patients here: https://www.cff.org/managing-cf/minerals).

I keep finding myself wondering how something so perfect looking can have so many things going on on the inside. I guess we could say that for a lot of things. Nonetheless, I try not to let myself stay in that state of mind for long. I remind myself that we know this early and that we’re already doing preventative and active treatment. There really is so much hope in the CF world, and most importantly there’s hope in God’s plan for his little body and mighty soul.

“Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”
– James 1:2-4

Adam and I have consistently felt that while Maddox’s diagnosis will bring many trials, it will equip him an unmatched strength that will fuel his ability to endure anything life brings. We believe it will build his character and fortify his faith. Sometimes blessings are buried in hardships.