The Waiting Game

Have you ever had to wait for something? Something you REALLY wanted? Time stands still when we have to wait for anything. We are a society of immediacy; we want it and we want it NOW! Multiply that feeling times a hundred, maybe even more, and you might get a glimpse of how I felt waiting for my son to come home. Two weeks had gone by, and we still weren't any closer to finding out a diagnosis for Derek. Every day we would go in there, hoping this would be the day we would get our answers. And every day, the same thing. “We don't know what's wrong yet.” Which of course, meant Derek was still not able to come home.

At the time of Derek's birth, we lived in West Palm Beach, which is a little over an hour away from Miami. My parents lived in Hollywood, which was only half an hour away. So we stayed with my parents during Derek's stay at Jackson. This was helpful too because we could leave Brooke with them while we went to visit Derek. Brooke was only two years old when Derek was born, and we had no idea at the time how this would impact her life. We couldn't bring her to the hospital, as we didn't want to frighten her with all the doctors, needles and machines attached to her brother.

I had wanted to breast feed Derek, and I was encouraged to do so for Derek's sake. So, I pumped numerous times a day, froze the milk, and then daily would transport it with us when we would go see him. But within a week of his birth, it was obvious Derek's appetite was decreasing and the nurses had a hard time getting him to eat. So the doctors changed him from breast milk to a special formula, which was loaded up with calories. He was born at 8 lbs 10 oz, but was losing weight rapidly. Even as I'm writing this now, I can still feel the pain in my breasts of making my milk dry up prematurely; it really was just beginning to come in. This was yet another stab to my heart, that I didn't have a baby to hold in my arms & nurse. My son was still living in that cold hospital, hooked up to so many machines and being poked and prodded every day of his brand new life.

The doctors were telling us they were having a hard time locating Derek's kidneys. They knew they were there, as he was urinating. But locating them was another story. Finally, two weeks into Derek's stay, the kidneys were located and the diagnosis was given: Chronic renal failure due to hypoplastic kidneys, also having an imperforate anus. WHAT?? Interpretation: kidney failure, due to the kidney's never fully forming, along with the intestines that didn't fully form as well. His kidneys were like little tiny balls. This is what I had been waiting for? To be told my son's kidneys were barely functioning? All this did was create a hundred new questions in my mind. No closure, just mind-boggling questions.

Finally, after three weeks in the hospital, the doctors gave permission for Derek to go home. Once the diagnosis was given, a treatment plan was established and we were told we could take him home. With all the waiting I had done to get to this point, one would think I would be ecstatic. I was anything but. I was absolutely, 100% terrified to bring my son home. What if I couldn't take care of him? What if something happened to him while he was at home? How do I know what to do? I was 24 years old, the mother of a normal two-year-old daughter, who had zero medical experience with anything other than a thermometer. How was I going to take care of this fragile little boy? I could still barely look at the colostomy bag. Now I was going to have to change it. And Derek wasn't able to have a real bath. Only a sponge bath. He couldn't be submerged into the water due to the risk of infection of his stoma, the end of the intestines that was pulled out through an incision in the abdomen and was now covered with a hideous, smelly bag. This was the baby I was finally bringing home, three weeks after his birth. We left the hospital with instructions to return to the clinic in three weeks for a follow-up visit. Welcome home, Derek.