93 Day NICU Update
Hi family and friends,
It's been quite a while since my last update. It's hard to believe we've now been on our NICU journey for 93 days. The past month has been filled with both challenges and triumphs, but overall much-needed stability for Clifford. In terms of milestones, we're celebrating a significant one as Clifford crossed the six-pound mark— our little warrior is 6x his birth weight! Additionally, all his brain scans have returned normal results, providing us with so much reassurance. The spotlight remains on his lung development, an area where progress has been slow. Clifford is still relying on high support settings on the conventional vent, and this continues to be our biggest concern.
Our hope was to start DART therapy again and trial extubate to get Clifford off the vent, however, we've had some setbacks. A routine eye exam revealed progression in retinopathy of prematurity (ROP), leading to a treatment called Avastin, a medicine given as a shot to both eyes. Since treatment, we're relieved that his eyes have shown signs of improvement. Additionally, being confined to the ventilator with limited movement has caused a lot of swelling and fluid retention - he's been very puffy and not looking like his normal self. (But he's still incredibly cute!) And now most recently, Cliff was diagnosed with pneumonia for the third time. Thankfully, it didn't affect him significantly, but we did need to increase support on his ventilator settings. With all this being said, our hope to restart steroids and extubate him is on hold. The plan is to wait a bit longer, hoping Clifford's respiratory support decreases for a better chance of successfully getting him off the vent. This will most likely lead to an additional 3 to 6 months in the hospital before coming home. It's been a stark reminder that his journey, though marked by incredible progress, is still an uphill battle.
In other news, the medical team has introduced the idea of a tracheostomy. This involves surgically placing a tube in Clifford's neck for long-term ventilation support for the first couple of years of his life. While it opens the door for Clifford to experience the freedom to be a 'normal baby', it comes with the challenge of requiring 24/7 care - and finding home nurses can be really difficult. While this certainly is a last resort for us, and we hope to make progress over the next couple of months before having to make this decision, we know it will be temporary until Clifford's lungs mature enough for him to breathe on his own.
If I'm being honest, these past three months have been incredibly tough. Navigating uncharted waters in the NICU and grappling with new challenges every day has been unbearable at times. But amidst all this, I find strength in the amazing spirit of my baby boy. He fights tirelessly every day just to be here. He has fought through so much. I was chosen to be this little guy's mama for a reason, and I will do whatever it takes to bring him home! This journey might be a little (or a lot) longer than we anticipated, but I know we've got this. In the grand scheme of things, this will be a very small part of Clifford's life. And we are so thankful for everything he has fought through to be here.
A lot of this might sound negative, so I don't want it to get lost that Cliff has made a lot of progress. The fact that he is growing and doing well in all other areas is incredible! He loves listening to lullabies, he's tolerating food like a champ, enjoys bath time, loves to be swaddled and hold our hands, likes when mom and dad talk to him, is constantly drooling and blowing spit bubbles, wears clothes, and is already wearing newborn diapers! He's growing every day and we just love him so much.
Thank you for showering us with love and support during this challenging chapter. Your prayers, thoughts, and well-wishes mean more than words can express!
With love,
Sadie
