March 8th

Colton is doing well today, but he really needs his rest. We’re trying to disturb him as little as possible and only move him during his cares. He definitely lets us know when he’s unhappy, especially if he has a dirty diaper! He also gets pretty upset when he has secretions in his mouth. He hasn’t quite learned how to push them out on his own yet, so he tends to just hold them there and needs help clearing them.

Tomorrow is an important day for Colton. He will be having another echo of his heart, and we are praying hard for good news 🙏🙏. We are hoping to see that his PDA is getting smaller and healing with the antibiotics he’s currently on for his infection. We would appreciate all the prayers and good thoughts heading into tomorrow.

Declan is doing well too, though he definitely has his moments when he gets upset if things don’t go his way. Today he needed a new IV so he could receive blood, which he really needed. Right now Declan isn’t producing platelets the way we would like him to. We’re hopeful that as his belly continues to heal, his body will start producing more platelets and not use them up so quickly. The team is also trying to limit how much blood they take from him so he can keep more of his own and help his body rebuild.

On a really positive note, his liver looked great on ultrasound, which was wonderful news. Declan also got his own ostomy bag today to help collect his stool. Seeing that is encouraging. We are praying that everything inside his belly is growing the way it should and that he has enough small intestine to help him grow into a big, strong boy. He still has a long journey ahead, but the longer we can wait before another surgery, the better chance he has for a successful outcome. We are incredibly proud of how hard he is fighting.

Overall, the boys seemed very happy to have Daddy here this weekend. Of course, once he left they decided to act up… just kidding. They were just their usual evening crabby selves. We’re hoping for a calm night and an even better day tomorrow.

Keep the prayers coming.