Stanley has already exceeded everyone’s expectations and he doesn’t seem to know it! He acts like a normal baby, just a lot smaller. He’s resting a lot and generally seems very easygoing.

A couple of hours later, he starts to stir, so we try feeding him. To mom’s dismay, his mouth is too small to breast feed and his jaw is not strong enough. We ask for, and receive, a bottle with formula. A family friend – an off-duty nurse – takes a turn holding Stanley, trying to feed him. The nipple is way too big. Stanley gets a few drops, but that’s about it.

We ask for a preemie bottle and it works a little bit better, but it’s still too big. He can’t suck, but we’re able to get him to drink by giving him a few drops at a time. He seems to like it, but it’s a slow process. More waiting. Stanley rests comfortably.

About eight hours after Stanley’s birth, the pediatric cardiologist enters the room and performs an ultrasound of his heart. She finds what the others had seen prenatally: a large ventral-septal defect (VSD). The middle wall that separates the two ventricles of the heart (the ventricular septum) is about half as tall as it should be and the top is wide open. His heart sounds like a little washing machine. Everyone, including the doctor, is amazed that he is alive and seemingly well.

As the ultrasound progresses, Stanley is positioned sitting upright and his head slumps forward. He turns noticeably blue, and the doctor says, “Does he seem blue?” We quickly prop his head back up. We later find out that turning blue (or cyanotic) is very common for children who suffer from a VSD. Also, much to the surprise of the many medical professionals we will speak with in appointments and conversations to come, this is the only time we will notice him turning blue. Once we reposition him, Stanley’s skin quickly returns to a normal pinkish color, and he is fine.

We are all amazed that he doesn’t seem to be profoundly affected by his heart condition, but we are definitely thankful. He is a beautiful little baby – a joy to hold. He is very sleepy, as newborns typically are, so we just hold him and enjoy him. He seems to be comfortably peaceful.

About five hours later, we are transferred to a larger recovery room. This room has enough room for several visitors at a time and an extra bed for dad to sleep on later. We pass the time talking with the many friends and family who come to visit. People genuinely enjoy holding Stanley and we’re grateful that so many do. It’s so surreal – he shouldn’t be doing this well, but we’re so glad he is. What a gift from God!

Every few hours, we feed him using the preemie bottle by drip feeding a bit at a time and letting him have a moment to swallow. Feedings are slow and laborious, but it seems to work. We also start writing down feeding times so we don’t lose track. Eventually grandpa and grandma take our other kids home and we have a chance to get some much needed sleep (especially mom). We wrap Stanley and place him next to dad on the other bed.

Throughout the night and way-too-early into the next morning, staff enter the room wanting to test him for various things. They ask us again and again what our plan is for him regarding medical interventions. We expect him to die at some point soon (considering that all the doctors have unanimously explained that he’s “incompatible with life”), so we say that we don’t want extraordinary interventions that would reduce his quality of life – we want him to stay with us. However, we wonder whether we should dare to hope that he will be with us at least for a little while longer.