8 weeks ago James was born in an OR full of people ready to intervene if he came out in distress. The first words he heard from us were “Is he okay?” A few hours later he arrived at CHOA in a NICU ambulance and was admitted to the cardiac ICU. The CICU has individual rooms, but the entry to each room is large sliding glass doors that almost always remain open. Nurses sit outside each room and can see in through a window 24/7. Alarms for his monitoring and medications went off multiple times an hour. We have asked “Is he okay?” hundreds of times, and the answer was not always “yes”. Today his doctors decided he is okay enough, and he was moved to the cardiac step down unit (CACU).
His monitoring in this unit is portable and less frequent, so we got to lay in bed with him and walk around the room with him for the first time. Eventually we will be able to leave the room and go outside. We have a real door. Tonight we are alone with him for the first time, no one is watching us through a window. It is quiet.
It will be a long and precarious road for James, every doctor makes sure we understand that. We may go home, or stay here, or end up back in the CICU. But for now, we feel blessed to be in the CACU. He is a fighter. For now, he is okay.
