June 13th

Sorry for the delayed update. The last couple of days have been busy, and we've been taking things one day at a time with the boys.

Colton- Let's start with the easier update. He continues to do really well and is absolutely living his best life right now.

He spent time flirting with his auntie on Friday, holding her hand, and soaking up every bit of attention he could get. He has also continued working on bottle feeding and is now taking 10 mLs from a bottle three times a day. They may seem like small volumes, but they are huge steps for him.

He has discovered that he loves sitting up in his chair and being upright where he can see everything happening around him. He is becoming more aware of his surroundings and definitely has opinions about how he wants to spend his day.

And let's talk about the pacifier. Colton still treats it like a projectile. Every day he somehow manages to launch it across the room the moment he decides he's done with it. We're pretty sure he has figured out that dropping it gets him immediate attention. His favorite nurses may have contributed to this discovery by giving him plenty of cuddles whenever he asks. (Hahaha)

Mom and Dad have also been spending a lot of time learning his trach cares. Weekends are especially busy because we're both here together and can practice as much as possible. It's definitely intimidating at times, but it's also exciting. Every new skill we learn brings us one step closer to being able to care for him at home. The more involved we become, the more confident we feel, and we're loving the opportunity to do more for our little guy.

Overall, Colton has been having some really good days.

Declan

Declan's journey over the last couple of days has been a little more challenging.

We learned that he has an infection in his bloodstream. Initially, there was concern that the infection could have spread and caused meningitis. The Infectious Disease team evaluated him and ultimately felt that meningitis was unlikely, so they decided not to proceed with a spinal tap.

Instead, the plan has been to treat him aggressively with strong antibiotics while closely monitoring his progress.

His belly also became a little tighter, which understandably made everyone nervous given his history. Additional X-rays were done, and thankfully there were no concerning findings. Even the surgery team felt that his belly was not the source of the problem.

At this point, we believe Declan is simply fighting a significant infection. We are continuing to work closely with all of his teams to determine the best path forward. Ideally, we'd love to get him back to eating soon, but we want to make sure we're doing it safely and not rushing the process.

As you might imagine, he has been pretty cranky. Honestly, we can't blame him. He isn't feeling his best and has made it very clear that he would prefer constant attention and someone available at all times to hold his pacifier. Thankfully, there are plenty of people willing to give him the extra love he is requesting.

We're taking things day by day and hoping the antibiotics continue to do their job so he can start feeling more like himself again.

Overall

The last couple of days haven't been perfect, but they haven't been horrible either.

Declan is working hard to fight off an infection, while Colton is busy charming every person he meets and making progress with feeding and trach care. It wasn't quite a full green couple of days, but there were still plenty of wins worth celebrating.

As always, thank you for the prayers, messages, visits, and support. Every milestone, every setback, and every little victory feels easier because we know we have so many people cheering these boys on.

Holding Auntie Christie’s fingers 🩵