168 Day NICU Update
Hi everyone!
Sharing a positive update on Mr. Clifford's journey. After some challenges finding the right vent settings, we've had over three weeks of stability – a big step toward reducing his support! With fewer vent adjustments, Clifford has been able to rest, grow, and make developmental progress. He's now more resilient, handling life transitions with less stress, moving and interacting without as significant desaturation. The once frequent and dramatic spells have become less alarming, allowing us to engage in more normal activities. He was even approved to start bottle feeding! He tried his first bottle this week and was so excited that he was literally lunging at the bottle. Unfortunately he drank a little too fast and spit it all up, but Speech Therapy is going to start coming daily to keep working on his oral feeds. Clifford has also been growing like a weed (so is his hair) and he’s over 10 pounds! We can’t believe how big he is. But, to put things into perspective, a baby next door was born a week ago and is the same size as Cliff. I almost forgot to mention, he was diagnosed with Rhinovirus, which is similar to a cold but can be very scary for babies with chronic lung disease. Thankfully, he handled it like a champ and other than a constant stream of boogers, he didn’t show any signs of struggle. This is very good news and shows that he is getting stronger!
In other news, Clifford is off all sedation meds, showing more alertness. He’s experiencing the world with full clarity for the first time! Our ongoing challenge continues to be his gas and hernia pains. We’ve been advocating to get this fixed and are grateful to share that he has surgery scheduled for Monday. We’re hopeful this will give him more comfort! Despite the nervousness surrounding surgery, it's expected to be a routine procedure. Clifford also has laser eye surgery and a 'Mickey button' placement (replacing the long feeding tube that comes out of his tummy for smaller more discreet access) later this month. We’re anxious to get these procedures done but excited to check them off the list!
With the stability Clifford has achieved, we're cautiously and gradually weaning his vent settings. This slow process, with the goal of transitioning him to a home vent, may take months. Once on the home vent, he’ll need to maintain stability for at least a month before considering discharge. While the discharge timeline is uncertain, we are hopeful that things are moving in the right direction. Currently cherishing Clifford's 'baby stage,' we appreciate your continued prayers for successful surgeries, ongoing growth and development, as well as a smooth weaning of vent support. The journey home continues, and your unwavering love and support mean the world to us! We can't wait for the day when you can meet Clifford. Thank you for being a constant source of love and encouragement.
Sadie
