June 12, 2017
Congenital Heart Defects (CHD) is the #1 birth defect in America, affecting 1 in 100 children! We didn't know this statistic going into the birth of our 3rd daughter but we should have. My pregnancy was pretty close to the norm for me. We knew this was expected to be our last child so we planned to do something fun with this pregnancy. Our second child, we had the ultrasound technician write on a piece of paper, the sex and put it in an evelope that we opened on Christmas day! It was so exciting for us all!! We decided this time we would choose the name but hold it from family and friends until the day she arrived, little did we know that there would be far more pressing issues that would take away from the excitement of the announcement planned.
Kerrington was a planned c-section like all the others. Everything went as expected until right after my OB held her up to show her beauty to me! As a mom of, now 3, I knew what should happen. They should have had her up to my face so I can see and love on her while they take care of the clean up. WHY wasn't this happening? Where was she and why did my husband have a concerned look on his face? Something was definatly wrong. I then remember meeting a very friendly, pediatric neonatologist who then explained that our baby was having some breathing issues and that they were going to take her to the NICU for some testing. I did get to look at her as they wheeled me by her getting a echocardiogram. Looking back, I now unforatunatly know what a echocardiogram is all too well.
My next visitor would be a Pediatric Cardiologist who has been called over. Little did we know that this gentleman would become part of our family, a lifeline in the midst of fear! He proceeded to explain to us our daughters diagnosis and that she would need to be transported to Kentucky Children's Hospital. She was gone within a couple of hours. It was all a horrible blur! I was so depressed as I was recovering from my c-section. My husband would do his best to be there for everyone, bringing photo's to me of our sweet baby. The depression I had during this time was like nothing I could express in words.
Kerrington was fortunatly released 7 days later from the NICU. The days ahead were very very very hard. She was a very sick child and at home. We received additional diagnosis's in the weeks that followed that would shatter our world even more. She could hardly eat without severe pain and vomitting which led us to a hospitalization at 5 weeks for failure to thrive. I want to share one experience from this admission that will forever be etched in my mind. Our Cardiologist was like father bear to us and her. He had always did everything in his power to keep us out of the ER due to her immune system being so low. A illness could have killed her easily. When we took her in to the ER there was no other choice. After having tried the feeding tubes with no success she was sent down for a Endoscopy, where she stopped breathing in recovery. I still remember the feeling of holding her, the nurse grabbing her, calling on other medical staff, being pushed to the back where we couldnt get out but just watch in horror. I am thankful for my husband who shielded me some by pushing my face into his chest. She was put on a special formula that was very expensive, that you could only get through mail order and by the case.
At 10 months old, she was in heart failure. It was time for her big repair whether she was old enough or not. I had so many praying for us and counseling us during this time. We did not know what GOD's plans for her was but we trusted HIM, no matter the outcome. Her repair was a success! She did have some issues post surgery but nothing in comparrison to what I have experienced with other families that I have supported along the way.
The years that have followed have consisted of illness, good as well as disappointing dr. visits, Apraxia of Speech, ankle braces, weekly therapies, insurance battles, the sweetest of sweet milestones, heart surgery, and a heart cath to place an experimental valve to name just some. It's not a journey that we ever dreamed of being on and would never wish upon anyone. If you have a healthy child, count your blessing.....1 by 1...... and help those that arent as fortunate.
We are raising funds for the Wild Hearts Fun Run, Kerrington's Heart largest fundraiser! The mission of Kerrington's Heart is to provide education, encouragement and hope, while creating a network of support for the families and caregivers of children with heart disease. We needed that support that wasnt there. These families now need our support! By making a donation, you are allowing us to do just that!
Thank you from our family to yours!