May 25th

This weekend was exactly what we needed.

Dad’s birthday weekend was a success. We were able to spend some extra time together Sunday morning before heading back home, and it felt really special to squeeze in those extra moments. The boys also had two additional visitors this weekend and absolutely loved showing off just how stinky and boy-like they are becoming. Declan especially thought he was way too cool for mom while company was around…. he wouldn’t even hold my hand because apparently I embarrass him already.

Sunday night we were able to go home and spend time with family to celebrate both Dad and Great Grandpa’s birthdays. We missed the boys deeply while we were away, but it was nice to have a small taste of normalcy again, even if only for a few hours. We kept talking about how hopefully next year both boys will be there with us celebrating too.

Colton is continuing to do really well overall. He remains incredibly stinky and is still working very hard on pooping, but he’s slowly getting the hang of it. He absolutely does not appreciate the added fortifier in his formula that’s helping give him extra calories, and he makes sure everyone knows it. Right now, the goal is to keep things as stable as possible leading into Thursday’s procedure. On Thursday, Colton will be getting his trach. I know many people have questions about what that means and what comes next, and I promise I’ll share more updates and information about the process over the next few days.

Declan is also doing well. He’s finally starting to slim down, which is actually exactly what we’ve been hoping for. After all of his surgeries, he held onto so much extra fluid and swelling, and it has taken a long time for his body to slowly let go of it. For the first time in their lives, Declan is actually smaller than Colton. We are watching some additional redness on his belly closely right now, and we’re hoping it’s simply pressure and gas because he still hasn’t pooped yet either. Tomorrow we’ll be able to discuss things further with the doctors during rounds and hopefully have a better idea of next steps. Right now with Declan, so much depends on whether he finally poops. The encouraging news is that his oxygen needs continue to stay low, and they’ve been able to make vent changes so he doesn’t require quite as much support.

Overall, this was the birthday weekend Dad deserved. It was much calmer than the previous weekend and gave all of us a little bit of room to breathe again. Today I was even able to spend about 30 minutes outside by the lakefront just sitting quietly and enjoying the beautiful weather. It still doesn’t feel like a holiday weekend or even the end of May. It’s honestly hard to believe that next week is already June. Even crazier to think that on Wednesday, the boys will officially be four months old.

Four months of fighting.

Four months of growing.

Four months of proving just how strong these boys truly are.

Hoodrat Colton

Sleepy Declan… trying to act cute, But also waiting to grab his tubes.