Charlie’s Story How do you summarize the terror you feel as a parent when your child is sick? I wanted to write a short and sweet version of her story here, while still sharing the fear and helplessness, but I don’t think I can. Everything was going as planned until day four of her life. When we were home and noticed her heavy breathing and grunting. I thought it was nothing, but Brandy, my wife, thought she should take her directly up to the pediatrician. The moment the doctor picked her up, she completely quit breathing and went into shock. Her body went limp. The doctors immediately started oxygen, CPR, and called 911. If that doesn’t scare you enough, a few hours after she reached the hospital by ambulance, we were informed that they were going to fly her to St. Louis Children’s Hospital because they couldn’t stabilize her, but we would have to sign a wavier stating we understood that, they would have to bag breath for her, and it wasn’t safe for her to fly. Over the next few days we discovered, she had CHD, Congenital Heart Disease, three different heart defects. The first being her aortic arch was completely separated. Second her aortic valve was too small, so even if they repaired the gap in her aorta, her valve could not pump enough blood through it. Third, she had a hole between two chambers of her heart. After much discussion over different approaches, it was decided on one 10-hour surgery to repair all three issues. At this point she was 10 days old. I’d love to tell you the rest of the year was easier, but it wasn’t. The initial surgery caused vocal chord paralysis and required her to be on a feeding tube. She didn’t make a sound until she was four months old. At one point, they told us maybe never. Imagine waking up at night to see in the monitor you daughter’s face scrunched up trying to scream, but not a sound came out. She could have been doing this for hours and you slept right though it. It made for restless nights for everyone. She was getting weekly home nurse visits, for the first 6 months. She still receives monthly Occupational Therapy, Physical Therapy, Speech Therapy, and a Dietitan. When she was a month old she quit breathing in a Red Robin Lobby. She received CPR there on the floor. Another ambulance ride, another helicopter trip to St. Louis Children’s Hospital, and another couple week hospital stay in the Cardiac ICU. After three more stays in the CICU for what should have insignificant colds and sniffles. Her body just wasn’t strong enough to fight off even the smallest of viruses and she would have to be placed on oxygen and monitored to make sure she didn’t stop breathing again. At five months old she received a cardiac catheter, and they had to go back in and balloon open her aorta where they had repaired the gap. With a opened up aorta, she got stronger and stronger. Her hospital stays and doctor appointments were becoming fewer and farther between. Over the course of her first year. She had over 7 weeks in the hospital, over 6 weeks in the ICU, 3 ambulance trips, 2 weeks on a ventilator, 2 helicopter rides, received CPR 3 times, 3 911 calls, and had a code blue called once. All while becoming the happiest most smiliest baby you’ve ever seen. Now to the reason for the story. Mended Little Hearts is holding their 4th Annual Roar & Run Virtual Charity Race. I’ve elected to walk a 10k to help, and I need donations. They helped us immensely. They work to raise CHD awareness and make “bravery bags” ( bags with toiletries and comfort items for families stranded at hospital ). We received a bravery bag and pamphlets to read about CHD after Charlie was stabilized in the Heart ICU. We spent hours combing through their website, learning all we could about Charlie’s issues and prognosis. They stocked comfort stations for the parents at the hospital. This seems like such a small thing, but when your child is in the hospital you don’t want to leave the room, let alone the floor or god forbid the building. They had volunteer parents visit us at the hospital. Charlie had a lot, and I mean a lot, of support from family and friends. Enormous prayer circles that we could never thank enough. But for us to sit there with another parent, telling their story, of their now teenage child, with every defect Charlie has, it was inspirational. These simple acts of kindness and information Mended Little Hearts provides really helped us learn about her condition and feel optimistic in a time of uncertainty. Thank you.