Never Missed A Beat
The day after Karley was born she was diagnosed through Echocardiogram with congenital heart disease (CHD) at the hospital. To find out our new, little daughter had holes in heart was one of the scariest days of our life and more so than a probable Down syndrome diagnosis. For the next few months we had to wait and see if her heart would repair itself or if she began to show symptoms of a failing heart at home. We noticed how hard she had to work to eat as she would break into a sweat every time she nursed. During a follow up appointment with her cardiologist there was good news, Karley’s ASD (atrial septal defect) reduced in size but her VSD (ventricle septal defect) was the same size and PDA (patent ductus arteriosus) was still open. It was determined that Karley needed open heart surgery. By the time Karley was four months old we had to come to peace with the fact that it was time to literally put our daughter’s life in someone else’s hands because it would save her life.
We prepared for her surgery by meeting with the surgeon and asking questions, reviewing the information about her heart defects, and talking to everyone we knew to help us walk ourselves through the process. On surgery morning, after a prayer for Karley with the hospital chaplain and our family members, we told Karley we would see her soon, as she left in the arms of the anesthesiologist to be prepared for surgery. It was the first time we had ever been apart. Over the course of the next five hours we visited with family, waited for updates from a nurse, read and looked through optical illusion books, had lunch, and walked around and checked out the hospital. Even though friends and family came to support us and we were told the statistics of success were on Karley’s side, I felt so alone not knowing anyone else who had gone through the same thing we were going through. I wished there was some one there to talk to who could reassure us with their story or their child.
When the nurse came in the final time she let us know that Karley’s breastbone had been wired in place and they were almost done stitching her chest closed. Half an hour later we got to see our first glimpse of our little girl as she was being transferred down the hall by her surgeons to the Pediatric Intensive Care Unit (PICU) and I finally felt like I could stop holding my breath. The four days of recovery following did not seem as long as that day in surgery because we got to be by her side and watch her come back to life as she opened her eyes again for the first time. I was thankful for the precious moments that came over the next four days when she kicked her little feet, grasped my finger, fell asleep with a smile on her face, and hearing the sound of her voice when she cooed. We looked forward to holding her, taking her home, and watching her blossom now that her blood was flowing to her benefit.
It seemed like the moment we got home I could see her growing in front of my eyes as if she had never missed a beat. She looked, lifted, rolled, reached, gurgled and grinned with more purpose and poise than ever. Karley was more active and alert than she had been before like a caterpillar that morphed into a beautiful butterfly that was free to explore the world from a new perspective with strength and energy. From then on Karley’s baby-tude kicked in full force and her big personality really began to shine. She amazed us every day with her courage, will, independence and intelligence and still does.
We still have a hard time fathoming the precise and delicate skill needed to work on her tiny little heart that was only about the size of her tiny four month old fist. We are so grateful for the technology and expertise that saved our daughter’s life. Most of all we are forever indebted to Karley for coming into our life. The experiences we have had since her birth and the journey we are on now because of her have enriched our lives more than we could have ever imagined. Today Karley is nine years old and is a third grader. In our community she is a cheerleader, Girl Scout, friend, classmate, student and more. At home she is a daughter, sister, pet lover, reader, artist, dancer and the list could go on. Karley is so full of life and love. We wouldn’t want our lives any other way. There have been trying and scary times like heart surgery but those moments will never amount to the joyous and amazing times we have had and get to have with her for the rest of our lives.
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