June 15th

Today was a good day, and for the first time in a while… scared to even write this as everytime I do 24 Hours later something changes. 🫣

Declan Update

The big news is that Declan got to eat again today! The team started him on a gentle formula that should be easier on his belly. For now, we're holding off on breastmilk while we rule out any potential allergies or sensitivities. Given all the belly issues he's had, the doctors want to make sure dairy or anything else isn't contributing to his problems. This is simply a way to eliminate variables without putting him through additional testing. We absolutely plan to try breastmilk again in the future.

Declan is now down to just one sedation medication, Precedex. The plan is to slowly wean that off once we can work on his breathing. While he has to breathing tube we will need some pain meds.

The best part of my day was getting some snuggles with him. He was having a tough time settling down and needed some extra comfort. After a little food and some cuddles, he finally relaxed and fell asleep in my arms. He spent most of the day sleeping and mostly wanted someone to hold his paci for him.

Colton Update

Not much changed for Mr. Colton today, which is exactly how we like it. The team is doing a PEEP study this week to see how much support he truly needs to help keep his lungs open.

I also got to hold him today, and he got one of his feeds while cuddled up in my arms. He's now drinking 15 mLs three times a day from a BOTTLE and if all goes well, he'll be up to 30 mLs by Wednesday. Seems so surreal to me.

Overall, it was a day full of baby snuggles, sleepy boys, and a few small but meaningful steps forward. We'd love to be excited, but this journey has made us cautious. So instead, we'll simply be grateful for a good day and hope for another one tomorrow.

Crabby Declan before his nap

Colton snuggles while drinking from the bottle