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A ROCKY START |
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2/97 What a wonderful experience Zach's birth was. Childbirth is an awe-inspiring experience. I don't think anything can compare to bringing a life into the world. I guess that was really the last day our lives would truly be normal. When they took Zach over to N.I.C.U. I certainly didn't think he would be there for five weeks. Other than having a slightly low blood sugar level, Zach seemed to be doing fine. In fact they were getting ready to send us home and his low blood sugar was the only thing stopping us. They decided to wait until it was a little higher so I went to work. One of the most difficult couple of hours of work I have ever had was waiting for the other pharmacist to come in and relieve me that day. The message the nurse gave me was that a pediatric cardiologist wanted to talk to me but they wouldn't say what it was about. My imagination ran wild. Most of what I feared would eventually come true. That's when we first met Dr. Garabedian although it was Dr. Leonard, the surgeon, who we sat down in the office with at Deaconess NICU. Problem #1 was the coarctation (narrow spot) in Zachary's aorta. This would need to be done almost immediately. Problem #2 the VSD (hole between the two ventricles) could wait until he was older. The second surgery would be more invasive and subsequently more risky so the longer we could wait and the bigger he could get, the better. At that time Dr. Leonard was unaware of any other problems. He assured us that Zach should have no physical limitations. Football, Hockey, whatever, with the successful completions of both surgeries. This was the first of many times that the hope of a normal childhood would be dangled before us. It was strange saying goodbye to Zach before the first surgery. It all happened so fast. We loved Zach but it was like with a long lost sibling whom you just met for the first time. You love them but you don't KNOW them. The first surgery went well. After several weeks it was great to finally get to take Zach home. Those first hours, days, weeks I'm sure are difficult for any parent but the fact that Zach had the hole between his two ventricles often hung over us like a cloud. Breast feeding had been interrupted by Zach's hospitalization and formula cost a ton but it was nice for me to be able to rock Zach and give him a bottle etc. About the time we started to get settled with Zach and finally feel a little bit like we knew what we were doing the bad news started rolling in. Zach's pulmonary pressure (blood pressure in his lungs) was way up. This is a very dangerous condition that the lungs can only endure so long. There are no medications that can treat it. Dr. Garabedian felt that we needed to do the second surgery as soon as possible but there were risks. The younger the VSD (ventricular septal defect) repair is done the riskier it is. Because of how the unusual muscling in the left ventricle appeared on many of the tests there was much concern that Zach's mitral valve may some how be evolved. That could make surgery too dangerous. Initially the surgeons were leery and didn't want to do Zach's surgery but after many trips to the hospital for testing (including my least favorite-the heart cath) eventually Dr. Garabedian convinced Dr. Leonard to do the second surgery. At one point, Dr. Garabedian told us that there was a 50% chance that Zach would need a lung transplant before he was 18. We felt that even though the second surgery was somewhat dangerous, it was worth the risk if it increased the odds of Zach having a more normal healthy life. Because of the risk we decided to have Zach baptized. We hastily arranged it with Deacon Schuster at St. Peters who we eventually became very close too and is now battling lung cancer. Deacon Schuster was the only person we had wait with us during the second surgery. I think his presence made us feel like God would be on our side. When Dr. Leonard finally came out of surgery he had two things to tell us and we chose to only listen to one of them. First he told us that Zach was in recovery and doing fine. We were so relieved that we only partly listened to what Dr. Leonard had to say, we already felt like our prayers had been answered. It's only after much reflection that I finally realize the rest of what Dr. Leonard was telling us after the second surgery. The hole that Dr. Leonard repaired was actually very small. This meant that Zach's problems were very likely not entirely caused by the hole between the two ventricles. He also told us Zach's heart would never be normal. Zach's recovery was tedious. During the surgery Dr. Leonard had nicked a lymph vessel (Lymph vessels are too small to be seen by the naked eye). Zach's chest cavity continued to fill up with the gravy like fluid. It continued to drain from a tube from his chest over the next three weeks. The first attempt to get Zach off of the respirator was awful. He struggled to breath and eventually, fearing that he would quit breathing altogether, they reintubated him. After many weeks in the hospital Zach finally recovered enough to get off of the ventilator. Less than a week after that we were finally able to bring him home.
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