We tested Eloise's reflux. The radiologist pushed 7 cc's of fluid into her stomach, and it went straight up her esophagus. There is no anatomical barrier for the contents of Eloise's stomach to stay where it is, and digest. This is a pretty big problem. So...today her surgeon placed a J-tube, a feeding button that is directly attached to her intestine. Yep, now she has 2 buttons on her abdomen (3 if including the belly button). She will be fed this way for a long time.
Tonight, as Eloise was miserable, crying, coughing, all tubes and wires and bandages and anger, I tried for several hours to comfort her. She finally settled down, but not before she had a horrible 5-minute desaturation.
It pushed me over some edge - being in the same physical, mental and emotional place again. Trip #14 to the OR, a very significant procedure, with so much discomfort, so much out of my control. The kid needed as much anesthesia as an adult because her tolerance for it is so above and beyond what it should be. Which also means pain medications are not as effective.
I have wished more than once that both Eloise and I had just exited the world at childbirth, and skipped all this. It has made me question the worth of life, not just in a metaphysical way, but in a very physical way. I have watched my child suffer every day for nearly 7 months. Why are we fighting so hard to keep her alive, if life really isn't worth living anyway?
That question has been buzzing in my head for months. A dark place to be. I guess falling off that edge afforded something good: I had a moment of clarity, even in the drab halls of the NICU. I thought of my brother Ben. I remembered all the fun we have had. Exploring tide pools on the beach in Hawaii, going to dances in high school, playing Balderdash at the kitchen table. I thought about how much richer my life is because my own parents saved his life when he was sick with cancer. I thought of the future, and how much richer Josephine, Amelia and Hazel's lives will be with Eloise. That is something worth preserving.
As for why my own life is worth living, besides raising my children, is actually a bit harder for me to answer right now. In my moment of clarity, I remembered there are centuries-old books hidden on bookshelves around the world, with information to discover. I remembered the pointed arches of Venice. How I want to take that train ride in Benin. There are new worlds in knowledge to discover, books to read, places to see. That is something worth preserving.