Building Endurance

At every surgery, James has some setbacks.

After the first surgery, the day he was born, he had to gain back the one-third of his weight he dropped during surgery, he had to learn to eat because, unlike normal babies, he never was given a chance to breastfeed when he arrived, and he had to learn to breathe on his own again.

After the second surgery, again we had some of the same issues as above, mostly about eating, having to put him on a naso-gastric tube to ensure he'd get enough calories, but also cognitive, psychological, and physical development. James needed to learn to be an infant: talking, walking, playing are foreign things, and his second surgery set him back to just about newborn status.

No small feats to overcome, these setbacks, even for healthy babies.

This time around, James awoke from sedation hungry, but silent, and immobile. He wanted to eat, he wanted to drink, like a newborn, but he couldn't (or wouldn't) speak, and he could barely lift his arms.

In the last week, James has begun to come back. He is talking more, playing more, moving more, and still very, very hungry. Still no classic smiles from James, but he is showing levels of determination, perseverance, and grit that I don't know I have ever seen in grown-ups. He has been, and continues to be, one of my greatest heroes.

We still have a long way to go medically before James can come home -- weeks, possibly months, before he's stable enough to take his pleural drainage tubes out -- but he has already come back to us in spirit, and I am positive he will continue to amaze us all as the days continue to fly by.