To this day I know exactly what five pounds three ounces wrapped in a hospital blanket feels like. I know because that was my first daughter laid in my arms on the day of her birth. That early morning was filled with all the excitement, suspense, joy and wonder that we had hoped for. Three hours later I was holding that little bundle in a rocking chair in our room while her mother was sleeping. I remember those two little dark eyes looking up at me that seemed to understand this was a strange new place but also seemed to recognize her parents were there to care for her. With a soft knock at the door our pediatrician came in to check on our baby. All was well with her fingers and toes, eyes, ears, mouth and nose. He listened to her breathing and her heartbeat and noticed a slight murmur in her chest. That is not uncommon in newborns as the heart is adjusting to doing all the work on its own. Usually the murmur disappears in a day. He would check on her again. That next morning began in much the same way; dad and baby sitting in the rocking chair with sunrise light creeping around the window shade. Our doctor listened again, and he heard the murmur still there. He said they would do a simple imaging test that morning just to make sure things were okay.
The nurse wheeled her crib out of the room, and her mother and I resigned ourselves to waiting and resting. Two hours later we told our nurse that it was time to feed the baby, but she had not returned from the test. Another hour passed, and mom and dad were growing impatient with the wait. It was definitely time to feed the baby. Why don’t they just bring her back? Finally, a nurse told us that a doctor was coming to speak with us. Why is that necessary? We just need to take care of our little baby. When the pediatric cardiologist came to our room, we knew the tone of the morning had changed. The doctor told us she had diagnosed our little girl with a complex congenital heart defect. She gave us an explanation of the condition, and though rare, it could be treated with surgeries and other procedures. However, this was not something that was going to be fixed next week. In the course of about two minutes my wife and I went from thinking about our baby’s next feeding to thinking about the life-long effects this heart condition was going to have. We were suddenly forced to confront our own dreams of who and what she would be as a baby, a child, a teenager and adult. Could we even allow ourselves to dream that far? It was only the second day of her life with us.
Through the years that followed we learned a lot. We learned how wonderful it is to have a child, to witness the daily changes as she grows. We learned how supportive and generous our family and friends and co-workers could be. They all shared pain and sadness and joy and laughter with us. We learned about the heart, especially those hearts that need fixing. Though my parents had medical backgrounds, I had never wanted to go into that field. Now I was researching articles from the Journal of Thoracic and Cardiovascular Surgery. We learned that heart surgeons had only been able to treat our daughter’s type of heart defect for about the last ten years. The expertise to perform the necessary surgeries was held by only a few surgeons in the country. One of those surgeons was at OU Medical Center in Oklahoma City, and his name was Dr. Chris Knott-Craig. After consulting with other experts Dr. Knott-Craig helped us make a plan for the series of surgeries that our daughter would need. That process began in 2004 and continued successfully through 2013. During those years surgeries were also performed by Dr. Peter Pastuszko at OU Medical Center and by Dr. Frank Hanley at Stanford University. Along the way we met other families with “heart kids,” and we drew strength from their support and from celebrating our children’s successes.
So how is she doing? She’s doing great! While her condition meant that we needed to be careful about some activities, she has done just about everything a girl should do while growing up. She has taken classes for gymnastics, ballet and swimming. She has played softball and volleyball. She has been in girl scouts, been to summer camps and ridden her own bike in Tulsa Tough. And through all of that she has been a very responsible big sister.
Last Friday our family had the privilege of watching our daughter perform in a summer theater camp. I was a very proud dad watching a beautiful young lady singing and dancing in the show. Twelve years ago I didn’t know if I could hope for that to happen. Now it’s here, and it’s a very special time. You are a very special girl. Happy Birthday, Sarah! I love you.
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