June 25th

The Boys Update

Colton

Colton has had a very busy few days, full of new adventures! He had his very first bath in a real bathtub, got a new swing in his room, and has been working so hard on learning to drink from a bottle. His personal best is almost 60 mL (2 ounces), and we’re so proud of him!

He’s also been working with PT and OT, learning how to use his muscles, hold toys, grab his pacifier, and build his strength. It’s hard work, and when he gets tired, everyone definitely knows it. 😂

We’re working on teaching him that he doesn’t need to throw a little temper tantrum when he’s exhausted. (Turning blue!) He’s becoming more aware of the world around him and absolutely loves staring at himself in the mirror.

One thing we’re learning is that Colton doesn’t know his own limits. If we let him, he’d play and practice all day, so we’re having to help pace him and make sure he gets the rest his little body needs.

Today he had a bit of an upset tummy and was pretty gassy, likely from learning to drink more by mouth. Thankfully, that’s expected as he continues practicing.

Medically, he’s doing well. His lungs continue to do a good job on the ventilator, his blood pressure and urine output remain stable, he’s tolerating his full feeds with increasing amounts by mouth, and he’s comfortable now that he’s off his continuous sedation medications. His electrolytes are being adjusted after changing one of his medications, but the team is keeping a close eye on them.

Declan

Our sweet Declan has had a little bump in the road this week.

He’s still working through some tummy issues.

Yesterday his feeds were paused because he hadn’t pooped and there was a small amount of redness seen in his stool, which understandably made everyone a little nervous.

Today we were able to slowly restart his feeds while also working on helping him pass more gas.

Right now, the biggest priority is making sure we don’t put too much stress on his belly, keep him comfortable, and let his digestive system do what it needs to do. The surgical team reassured us that this is actually a normal part of learning how his new belly and gas patterns work after everything he’s been through.

The encouraging part is that we know he can poop because he has before. Now we’re just waiting for his body to figure out the timing again. We’re hopeful that overnight brings good news and that tomorrow we’ll be able to continue increasing his feeds.

As always, thank you for continuing to pray for our boys. We celebrate every little milestone and trust God through every little setback. 🤍

Declan getting to sit up a little

Colton in the mirror 🥰

Naked Colton snuggles. Love that I can scoop him up…. Can’t wait to do this to Declan