Day 4

13 years ago today, I had my first look at my baby after surgery. ( I was having terrible spinal headaches the last couple days and was dealing with that in the surgery waiting room). He was so small (and look at him now!!). He was in a body cast from the middle of his chest to his ankle on one leg (he had an IV in his foot) and to his toes on the other leg. He also had an IV board on his arm that they put on babies to keep them from messing with the tubes. I was not allowed to hold him, he had 5 tubes coming out of his belly besides the IV's, oxygen moniters and everything else. He didn't have a gown on because of the cast and tubes and I thought he looked cold - it also probably had something to do with the fact that I was extremly cold there - I remember vividly how cold I was. I had been given a book on Bladder Exstrophy and the web site of a support group. 1 in 40,000 babies is born with this birth defect - I began to accept it as such now, when he was born we kept saying he was sick. The doctor told us BE kids often have several food alergies, latex alergies, and are short. HHHMMMM, he eats EVERYTHING, and has been very tall for his age since he was a toddler. We had limited number of and time limits on our visits into the PICU. Jerry and I felt very sorry for ourselves, until during one of our times in the waiting room waiting to get back into our baby, we heard a doctor tell a mother that her baby only had half a heart and would not live. From that day on we lived with the thought that no matter how bad off we think we are, there is always someone who has it worse. We have always felt lucky that anyone just looking at Steve would never know there was anything wrong with him. (Other than being a 13 year old boy)