Heart Update and Other Happenings!

Our favorite blonde bomber had some pictures taken of his heart yesterday and doc says all is well! We headed to cardiology at the recommendation of our Pulm team, following our wonky sleep study a little bit ago. They wanted us to check in with cardiology to be sure it wasn’t because of a heart issue that had progressed or something had changed. From a cardiac standpoint, this guy looks great. His murmur is still there and his pulmonary valve is still dysplastic, but neither issue has progressed and neither one is causing concern for his heart. It’s still beating as it should. We will continue to follow up and monitor for signs of pulmonary hypertension, which he’s at greater risk due to his chronic lung disease and low muscle tone. 

{Photo collage of Wyatt at his cardiology appointment. In the top left photo he’s getting his echocardiogram. Top right photo he has covered his face with a towel because he was extra silly. Bottom left photo he has a cheesy grin and bottom right photo he’s giggling with his mom while attempting to get a selfie.}

Our next step in the quest for some answers after his wonky sleepy study is an MRI. We met with neuro recently and they agreed an MRI is needed to be sure nothing has changed in his brain which may be causing his brain to forget some of the things it should be doing- taking breaths repeatedly, keeping the heart rate strong, and moving oxygenated and deoxygenated blood. 

{Photo of Wyatt playing in a Tupperware bowl filled with water. He’s in his blue and red pajamas, reaching in to grab a measuring cup. The bowl also has a sponge and measuring spoon in the water. Wyatt looks determined to get the lime green measuring cup.}

Our hope is we have the MRI soon and it rules out anything scary. At this point, there’s probably also a really good chance that Wyatt is just being Wyatt and there’s no actual medical explanation for what’s causing the concern. He’s definitely unique and as our team has reminded us before, they often have to throw out what they’ve learned in med school when it comes to Wyatt. He charts his own course. 

Wyatt continues to progress in his therapies and we are looking forward to a more relaxing summer with a few less therapies. We will continue with private physical therapy and feeding therapy each week, but will be taking a break from OT and school. 

Will update when we have more information about the MRI. 

Mother’s Day

Here’s to the boy who gave me the best title, Mom. Our journey has been full of twists and turns, but nevertheless, this guy has taught me a love I never knew existed. 

Some of our photos may have unusual backgrounds like hospital beds and ICU rooms, but they show a lot of love. 

Thanks for making me a mama, Wyatt. Now... if you’ll just let me get a full nights sleep, I’d appreciate it.