Journal writings about my youngest son's journey with spina bifida |
The next few days were filled with learning how to care for Jack's incision and change his dressing. We learned how to cut the plastic that would protect the incision from stool. How to position it on his back and adhere it to his skin. We learned how to cover it with gauze and then, carefully, do up his diaper. This would take place over and over again, with every diaper change. They told us that incisions by the diaper area frequently got infected, so we had to be extra careful. I would move the monitoring wires, adjust his IV tube out of the way, turn him onto his stomach and begin the process, confined to the small space of the isolette. Soon, we were deemed "pros" by the NICU nurses and allowed to take over all of Jack's care. The NICU had a parents' room where parents were allowed to stay for free. It was like a hotel room in the unit. My husband and I stayed there, close to Jack. One of us was with him at all times. We took turns going home to see our other children, taking showers, sleeping. That little boy was never going to feel alone. The surgeon came and told us that they had diagnosed the mass as a saccrocogheal teratoma, just like they thought. It was being sent to be biopsied, but the intial tests had showed it to be benign. Thank You, God! Before we could bring our son home, we had to see another surgeon, a social worker, an oncologist, and take a CPR class. The oncologist scared us. She explained that she would see Jack about every six months to be sure that the mass was not growing back and that he was free of malignant cells. The surgeon would see Jack about every three months for the first two years to be sure the mass was not growing back, then less often after that. The social worker asked us if we had a support system. It was overwhelming in its entirety, and we just wanted to take our baby home. Finally, the nurse told us that Jack would be discharged the next day and that he could stay with us in the parent room overnight. He had been moved to a regular, "open-air" bassinet just the day before. We eagerly agreed. We pulled his bassinet across the hall, into our room, and plugged his monitors into the outlet there. Then, we looked at each other and held each other's eyes. Finally, Jack was ours and ours alone. We were ensconced in our little hotel room in the hospital, no nurses, no doctors. We could turn off the light at night and sleep with our son in the room with us. My husband picked our baby up, cradled him in his big arms, and sank back into the LazyBoy in the room. He picked up the remote for the tv, clicked it on, and began watching a basketball game. Our son in his arms. |