A week ago today, we were celebrating John’s discharge from the PICU after 12 days and two surgeries. We were hopeful that we could go home and the healing would be quick, letting us continue with our lives and fully embrace the newborn stage (mom’s all time favorite.) we quickly found that just wasn’t our reality. We spent the weekend nervously watching him sleep, analyzing his every move, constantly deliberating what we thought was normal vs what wasn’t, and preparing to jump in the car and head for the ER at any moment. His breathing (although way better) intermittently still looks very bad… on Monday, he was having some labored breathing, but also became lethargic with a high heart rate, so we came back to the ER. 

His chest x ray was no longer clear, and after some tests we found that he had contracted Rhinovirus that caused swelling in his airways and lungs. This was actually a huge relief to us— knowing that what we’re dealing with at home is the result of inflammation from a very fixable infection. 
We’re now on day 4 back in the PICU. He’s been weaned back down to room air, but the intermittent distress hasn’t gone away. After a bedside scope with ENT, we unfortunately learned that this seems to just be his baseline. The swelling is minimal and the trouble breathing is a result of his abnormally small nasal passages (areas that cannot be fixed surgically) and his small lower jaw that blocks off his airway when laying on his back. 

Unfortunately, one of the only things that can fix these problems is time (months, maybe a year.) until John can learn to breathe through his mouth and grow enough that his nasal passages also grow, we will continue to have these same problems at home. The priority remains supporting him however we need to so that he can continue to eat and grow. 

It has already proven to be difficult managing his needs at home and any hope of having a normal newborn experience is long gone. His first month has passed and he has had limited nights at home, leaving us shuffling between the hospital and home, time away from Collins, time away from work for Andy, and endless stress and medical bills. 

We are so thankful for all who have taken care of him and are very thankful for the care he’s received at CHOA. The days have been long, and we know there’s even longer ones ahead. It’s has been so hard to sit on the sideline and watch all this unfold, so we’re continuing to ask for prayers for our boy, and us, as we work our hardest to support him however we need to.  🩵