Cache is an amazing child! I call him our life savor and hero. I can not begin to describe how much this child has and will endure in his life time. Cache was born at 37 weeks, 7 pounds 14 ounces, 19.5 inches long, and came out fighting.
We were living in Las Vegas at the time and I was about 32 weeks along. It was time for my appointment. I was excited another ultra sound to see the little guy. I was being monitored for my pre-term labor. There it was the heart rate, the thing you can’t wait to hear, and the reassuring drumming dance that comes out of your belly. You would think that this would be a happy moment, but the look on my doctor’s face said other wise. His heart is not fast enough. He is only at 90 beats and should be about 120. I am so sorry, but I have to send you to Labor and Delivery. What? How could this happen? I am not one to freak out, so off we went. Then the chaos happened. I was suddenly getting prepped for an emergency c-section. Heart block is what they were saying. Frantically we were trying to find babysitters and help. Flying grandma in from Utah, she could be here first thing in the morning. Then my doctor came in, it’s ok we are not going to take the baby. But they said, no, something is not right, but he looks ok. His ultrasound is great and if you were to show any doctor the heart strip and the ultrasound they would not think it was the same baby. Humm… special case, I am always the “special case”.
I was followed by so many doctors and so many tests. There were OB’s, neonatalologist, and pediatric cardiologist. It was a long 5 weeks. An amniocentesis was completed and the lungs showed mature. It was a wonderful 5 hours of labor total from start to finish. He looks great, but we are going to take him for tests. Not but 12 hours later he was being transferred to Sunrise Pediatric Hospital, and I was being discharged. When we got there we were greeted by the Pediatric Cardiologist, Dr. Acherman. He began to explain that Cache had a heart problem called Pro Long QT and bradycardia. He needed to be put on medication for the Pro Long QT but with the bradycardia there was no way because his heart rate would crash. He needed to place a pace maker in the morning. WOW! What a blow. What was supposed to be the happiest day turned out to be the scariest?
The surgery felt like forever. We were they only ones sitting in the waiting room because it was a Saturday morning. When all of a sudden 3 doctors came walking in. I think my heart sunk. Why 3? What happened? Then the surgeon spoke it went great. I think at that moment I was so overwhelmed with happiness that I wanted to just leap at him and give him a big hug. I could see he saw this on my face and just gave me the biggest smile and grabbed my hand. He is fine he said, still sleeping but fine! It was a long 3 weeks of recovery. A few set backs, his heart rejected the pacemaker and another surgery was performed to relive the fluid that was building up.
The day I took him home was the happiest day of my life. He wore the cutest preemie frog outfit that was so big on him from losing so much weight. My little guy came home.
We later found that this genetic syndrome was in my family, Cache’s uncle and cousins and sister all have it. He saved there life. By enduring so many challenges at the first of his life saved many others. A hero! Another side affect from one of the stands Cache has is hearing loss. Cache is also profoundly deaf. He has not once let these little challenges slow him down. He is not sturdy on his feet but he will keep up with you!
He is truly an amazing child that inspires me everyday. Just speaking of him can bring me to tears. I love him so much and that is why I have such a passion to inform others. I would never want to lose a child to such a fixable syndrome. Education is key and could save lives. Please visit www.sads.org to find out more on Pro Long QT.
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