Let’s start with the best news of all: each day, we’re seeing more and more baby out of our little one. As he’s come off of his heavier medications and continued to recover from surgery, we’re expericing an even sweeter side of Waylon. He’s more alert and active, and curious about the same four walls he’s spent so much time with. His face is very expressive and so is his body language. He loves to explore with his hands - even if that means trying to pull of his oxygen and feeding supports. He did experience withdrawal symptoms while weaning off his meds—which wasn’t ideal—but now we are on the other side of that, which is a relief all around.

Waylon usually settles pretty easily —sometimes it just takes a change in position or some rocking. Despite all the added constraints of this situation, being in the hospital has given us the gift of extended snuggles and bonding time.

Waylon likes music—Mitch and I sing to him, and he’s had more visits from the music therapist, Amy. While she’s technically here for the kids, she definitely took Mitch and me on a sentimental journey. A tear or two may have been shed.

Mitch has taken on 99% of the overnight stays since Waylon was born. Nights around here go about how you'd expect with a newborn—plus the added layers of monitoring, scans, treatments, and hospital-scheduled feeds. I tend to slur my words after a single night at “The Choco Inn,” so I have no idea how Mitch is still holding full conversations out in the real world.

We both do our best to carve out time with Donavon each day. He continues to thrive in the outside world, and we’re happy to report nothing but top tier updates from his amazing support team—Grandmommy, Gamma, Aunt Doreen (x2), Baba, and Diane.

Monitoring and hookups have continued to decrease, which has made it easier and more enjoyable to hold Waylon—and even take him on little outings. So far, he’s had a couple of strolls around the unit to check out different walls and the view from the playroom. It took some effort—his monitors and oxygen had to be wheeled along—but it was totally worth it. Shoutout to our nurse Julia for making it happen. It’s nice to have some “appreciate the little things” kind of moments.

Today, Waylon was approved for tummy time! It’s been two weeks since his chest closure, and with a little cushion and some support from his favorite PT, he did amazing—lifting and turning his head side to side like a champ.

Today the surgery team removed Waylon’s sutures from his chest closure and chest tube sites which have healed up well!

He did have one dramatic spit-up last night that sent his feeding tube flying. While he's been doing well with his feeds, they did have to insert a new feeding. tube. The good news: as of today, we’ve been cleared to feed him as needed—just like we would at home. Hopefully, this helps cut down the “hangry spells,” since we won’t be stuck waiting on milk warmers and a strict schedule as much. Fingers crossed for smooth feeding and continued steady weight gain.

We’re still working on weaning him off oxygen. Even though he’s barely on a whiff of it—and the nasal cannula is rarely in place—he still dips when it’s removed completely. The team’s keeping a close eye on his fluid retention and breathing to make sure he’s getting stronger and ready to take over on his own.

His respiratory treatments, which he was receiving several times a day, may be wrapping up soon. While that’s a good thing overall, he really did seem to enjoy them—they soothed him and often helped him drift off to sleep. I think he’ll miss those vapor sessions, and his brief time operating as close to a baby dragon as one can—but we’ll take it as a win.

Waylon finished the course of his antibiotics for his infection. He blood clot has gotten smaller so we will continue to treat and monitor it.

The days are full and time passes oddly in here. One minute it feels like we could go home tomorrow; the next, it feels like we’ll be here forever. Somehow, a few long days turned into three full weeks!

Waylon continues to be our light and we are happy to be by his side and watch him baby step his way out of the CVICU.

Happy 3-week birthday, Waylon—and happy August everyone!

-Joyce