My wonderful Son This story is about our wonderful son, Cameron, who was born with Hypoplastic Left Heart Syndrome, Stenotic Left Pulmonary Artery, Hypoplastic Left Lung, and a slow emptying stomach...believe it or not..he's doing great and is almost two years old!!! The pregnancy was uneventful in all, no morning sickness to speak of, all blood tests were normal, all ultrasounds were normal. At 11 pm on November 26, 2000, a sudden gush announced that my water had broken. Giggling, I jumped out of bed and ran to the bathroom, my 3 year old still asleep in our bed. After my shower, my husband and I dropped a sleepy Gabriel off at grammy and grandpa's house, and went to the hospital in Walnut Creek, CA., Our bodies shaking in anticipation of greeting our beautiful new child. The labor was also uneventful aside from some drops in baby's heart rate a couple of times, which is often normal during hard labor. In the late afternoon on November 27, 2000, our son was born! Absolutely gorgeous with his dark hair and eyes, it was love at first sight. He stayed with us that night, seemingly fine(his feet and hands were blue, but we were told again and again that this was normal in some newborns), he ate well, and was quite alert. What happened next would change our lives forever. The next day, we were packed and ready to take our new baby boy home, when the discharge nurse came in to give one final look over. I soon noticed her intense gaze as she listened to his heart for what seemed like hours. She said she could hear a murmur, and called in the doctor. My memory from there fades in and out. The doctor said his murmur sounded suspicious, but was probably nothing.He wanted to do an ECHO to be safe. He took our son. We were later called into the Intensive Care Nursery(ICN), where we were told the worst news of our life. Cameron has a serious heart defect, and will be put on a breathing machine, given several drugs to stabilize him, and UC San Francisco is on their way in an ambulance to take him to San Francisco. Well, I only remember two things after that, someone telling us to take a picture of him "just in case", and going home after saying a mournful goodbye with a plant in my arms instead of my baby. We were in total shock. No baby of ours could have a birth defect, there must be some mistake. We drove to UCSF that night with the instructions the transport team had given us. We came over the hill, Mt. Zion, and there it was, one of the tallest buildings I had ever seen, it covered several city blocks, on both sides of the street. We were told Cameron would be up on the 15th floor, so there we headed, our three year old in toe (I needed him there). A young doctor met us there in the hall, he must have been pacing, waiting for us. He would let us see Cameron, then wanted to have a meeting with us. We went into the ICN, and in the back was our baby, almost unrecognizable now, covered with wires and tubes, machines beeping and lights flashing. Again shock. All I could do was hold his hand, my head hung low, tears silently falling to the floor. My husband was my only strength, he was calm and assuring. I don't know how long we stood there. I think there was a nurse there, explaining the maze of life support to my husband; I heard none of it. In the meeting in a small room down a side corridor now. I don't remember going there. Two doctors, Pediatric Cardiologists (I didn't even know there was such a thing), they were young and good looking. I remember the woman, her blue eyes caring and compassionate, she looked intensely at us. She started to explain what was wrong with our baby, they had already done an ECHO and several tests. She started by saying "Cameron has several issues", she was drawing a picture on a piece of paper in an attempt to make us understand. Again, I hung my head, my shoulders shaking as I sobbed, tears forming a puddle on the floor below me. There was no denying it anymore, something awful was wrong with our baby. So, we had three options:
"You don't have to make any decisions tonight" they said "Go home tonight and rest" they said. On the way home, one thought kept running through my head; the thought of him being in pain was more than I could bare, however, if he was drowning in water, would I just leave him there? I knew that we had to give him every possible chance at life. So, I lay there that night, snug in my bed, and thought of little Cameron, laying in his tiny hospital bed, my body aching and exhausted from the labor and delivery just a day ago, and I thought to myself; There's no way he can live through this, I'm going to lose my baby. That night I found myself beginning to withdraw, to wither away. For the first time in my life, I was having a crisis that I literally could not bare. I began to wonder. I wondered if I died tonight, yes that was it, if I died tonight, I could somehow leave a will or something, something that would guarantee that my heart would go to him. After all, the boys would still have my husband wouldn't they! But then reality comes again, my heart would be far too large to fit into my tiny boy's chest. Defeated, my eyes closed. The next morning I awoke with a sadness I had never known before. It was there, sitting on the side of my bed, that I made a promise. The promise was this--no matter how much it hurt, no matter what happens, or what the doctor's say-even if we went to the hospital today and they said there was no hope for Cameron, that he will die no matter what they try to do to help him, and no matter how our hearts will be broken and our lives destroyed--WE WILL LOVE HIM. For if he dies tomorrow, he will know that he had a mommy and a daddy that loved him more than life itself, and a brother named Gabriel, and lots and lots of other people who loved him dearly, and prayed for him. He deserved at least that much. So, for a week, we waited for the day of his first surgery. Every morning we would drive for 1 1/2 hours to go to the hospital to see him, stay all day, and then drive home. It was totally exhausting. And during this time, Cameron was on so much life support that all we could do was hold his tiny hand and rub his soft little head. My arms ached to hold him. And then the day came, we came in that morning and they told us it was time. They took him off the breathing machine, and let us take turns holding him. It was the first time we were allowed to do so since he was born, and even though he was heavily medicated and slept the whole time, it was heaven, and when they came and took him from us, it was hell. Cameron did well with his surgery, as he did well with the rest of them. We have certainly had our share of complications along the way, in fact, I think we may have had every complication out there: staf Infections, feeding problems, serious illnesses etc. But he has somehow managed to pull through them all. The road we travel is long and full of bumps, potholes, and deadly cliffs to the sides, and we are only at the beginning, but this is the road we have chosen, and we are thankful to be here. So many people we have met along the way are torn away from the road, their only reason for being there having been lost, and so yes, if you ask, we are thankful we are still here. To date, Cameron has had 3 open heart surgeries, 8 cardiac caths, a Gastrostomy Tube Placement surgery, and countless procedures, pokes and doctor visits. When he turned 6 months old, he had only been home for a total of 2 months. What is he like? If he were an adult, most likely he would be bitter, depressed, and withdrawn. But not our Cameron, he's a fighter, he's stubborn, he's a great bratty little brother, he loves to wrestle, he loves to smile, he loves to be loved. He and his brother are our reasons for living. ~ FOOD FOR THOUGHT ~ As late as the 1980's, people picketed and protested, saying that the heart could not be operated on because the heart contained the soul. When that didn't pan out, they said the soul was in the mind, and if you were to ask someone who has had brain surgery, I bet I know what the answer to that would be. Is not the soul of a man all encompassing, all surrounding, saturating every cell, every thought, every emotion ?? There is a lot of controversy lately over stem cell research. People say it's playing God, that is the most egotistical thing I have ever heard. Humans cannot play God, we may be able to read the blueprints, but we are far from writing them. Someday, Cameron will need a heart transplant, doctors say all children with HLHS will. My dream is that these wonderful doctors will be able to grow my son his own heart, the one that he deserved to be born with, using his own stem cells, having no possible risk for rejection. We have been following Stem Cell research, in the hope that this "science fiction" science will some day save our son. So let's not be afraid of medical advances, after all, if it weren't for medical advances, we wouldn't be looking at Cameron's smiling little face and bright eyes today. Cameron is now doing great! He is in line for another surgery, however, when this surgery will be done, is unknown. There are new techniques and revisions being done for this staged correction, and because of this, there recently have been some questions as to the optimal time frame for the final stage. Cameron is watched closely by his Pediatric Cardiologist, Dr. Cooper, and as of right now, he is doing very well from a cardiac standpoint, and showing no need for more surgeries any time soon. Visit Cameron's web site: Cameron's website
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