After a few precious minutes with Stanley, we are transported to another room where we can have visitors. As we follow the maze of hospital corridors, one of the doctors expresses his sympathy and compassionately advises us to keep him on comfort care, to not subject Stanley to extraordinary measures, but to let him go. This is difficult to hear, but we understand where he is coming from. We also express that it is our wish that Stanley spends his final moments in as much comfort as possible.
Once in the room, we get on the phone and start making calls. We make it clear to our close friends and family that if they want to see Stanley, they’d better show up now. Many do — more than we expect. We take boatloads of pictures as people hold him, not knowing how many moments we will get to enjoy with Stanley.
A few minutes after we enter the room, our photographer comes in to take pictures. We had expected these to be memorial photos of a baby who would not survive, but here Stanley is! She seems glad to see that Stanley is alive — as we all are — and does a good job taking photos, but also appears to be unsettled by the situation and doesn’t linger long to talk.
Soon after this, a nurse comes in and expresses concerns that Stanley may need to receive care in the Neonatal Intensive Care Unit (NICU). We tell her we understand the concerns, but given his diagnosis, (to be blunt) we don’t have long with him. We tell her what the doctor had said regarding comfort care and respectfully state that we will keep him with us in the room and give everyone who wants to meet him a chance to do so.
We then tell the nurse that if he is doing well after a few hours, we may consider it, but if – as predicted – he starts to pass away before then, we’ll let him go peacefully. We don’t want him to spend his short life separated from his family and confined by the sensors, wires, and tubes he’ll be hooked to in the NICU. All of the doctors have been unanimously confident that he will not live long, so we just don’t see the point in subjecting Stanley to any unnecessary discomfort. It’s important to us to treasure these fleeting moments. The nurse remains concerned and unsure of how to process it all, but she understands that this is a uniquely difficult situation. It’s clear that although the hospital staff has been briefed about Stanley’s situation, they are confused as to how to proceed. He just isn’t passing away as quickly as they assumed he would.
Many relatives and friends come by to hold him and spend a little time. They enter and leave the room in small groups, treasuring the opportunity to hold him, with so many smiling, saying how cute he is. He seems like every other baby: sleepy, cuddly, warm, beyond beautiful, reveling in the joy of mom holding him.
Oddly, there just is no hint of Stanley going downhill. He just keeps right on going, despite the bleak diagnosis. He is surprising everyone with his stamina, peaceful resolve, and will to live. There will be more surprises, joys, and sorrows to come.