April 28th

Yesterday was a really good day for the boys, one of those days that gives you a little extra breath and reminds you how far they’ve come.

Colton got his new breathing tube, this time with a cuff at the bottom. The hope is that it will help manage the leaks better so he doesn’t have to work so hard just to breathe. We truly feel like so much of his energy has been going toward that, and it’s made it harder for him to gain weight the way we know he can. But if there’s one thing about Colton, it’s that he is an absolute fighter. Watching him push through everything that’s thrown his way is nothing short of amazing.

He did so well with the tube change. Better than we could have hoped for. He barely slept all day between ultrasounds, adjustments, and everything going on, he just wanted to be part of it all. He definitely has a little case of FOMO already, and it’s honestly so fitting for him.

Declan had a quieter day. He spent most of it resting, though he had a few fussy moments …mostly just wanting his legs free and a little more comfort. They gave him more blood and a dose of Lasix to help prepare his body for surgery. Everything continues to move in the right direction, and we’re so thankful for that.

One of the biggest comforts right now is knowing that his primary nurses are back for the next few days. The ones who know him best, love him deeply, and will be right there through it all. There is so much peace in knowing he will be in the best hands possible.

As we head into tomorrow, we’re feeling everything…hopeful, grateful, anxious, and honestly a little scared. This surgery feels big because it is big. It will shape so much of Declan’s future. We’ll learn what the next few months could look like, and maybe even get a clearer picture of the road ahead.

Right now, it all feels like a true test of control… or rather, learning how to let go of it. We can’t control what happens next. All we can do is trust, pray, and be present.

God has carried us this far, and we continue to see Him in every detail, every step, every small victory. So we place tomorrow in His hands, just like we have every day before this.

And in the middle of everything feeling so smooth and steady, mom completely forgot to take their official three-month photos. Which honestly feels like a blessing in disguise because it means things were calm enough to miss it. We do have some progress photos that we’ll share later, and looking back at how far they’ve come makes it all the more special.

If you can, please keep Declan in your prayers… 🫶🙏🤞💙🩵

Colton and his new tube - or as dad said: Fish Lips