Journal writings about my youngest son's journey with spina bifida |
We named our little boy Jackson, Jack for short. He had a light covering of light brown hair and large, bright blue eyes. He was over eight and a half pounds and twenty-one and a half inches long; so he was a strapping, young baby. His skin was soft and smooth and unblemished. . . except for the spot on his back. Just above his little cheek-bottoms, there was a bluish circle. A bump, about one and a half inches in diameter. It wasn't large and was unbroken. When he tightened his muscles, it would sink down into his skin, like it was being sucked down. They kept him in just a diaper in the NICU, so they could monitor this bump easily. The isolette kept him warmly enclosed from room temperature. The pediatric surgeon came and studied the bump. The neonatalogist on duty monitored the bump and discussed it with the residents. They alternately rubbed it or pushed it or left it alone. Finally, everyone said the same thing. "We don't know what it is." The chief neonatalogist told us he had been doing this before my husband and I were even born and he had never seen anything like this. The words came out casually, but hit us with full force. Now what do we do? What comes next? Jack had an MRI and an ultrasound. They performed x-rays and a barium enema. Still, no one could figure out what this was. The pediatric surgeons brought his films to the University Hospital an hour and a half away to have a radiologist read it there as well. Again, no answers. Surgery was scheduled for when Jack would be three days old. They were calling it "exploratory surgery." It was to remove the tumor and biopsy it. However, because they weren't fully sure of what they were dealing with, the surgery was only tentatively scheduled. It could happen or it might not. So, we waited. |