Heart Strong for Colson

Hello, everyone. I'm creating this meal train to help support one of the sweetest, most loving families as they face an incredibly difficult time. Right now, they need all of our prayers, love, and support as they walk through their son Colson's third open-heart surgery. As many of you know, Colson will be going into surgery tomorrow. Over the next three to four weeks, Aaron and Kristen will be balancing their time between being by Colson's side and caring for Karsyn. During this time, the last thing they should have to worry about is planning or preparing meals. Providing a meal is a simple way to help lighten their load so they can focus on what matters most—their family. They will need all the strength and energy they can get in the days and weeks ahead, and every meal, prayer, and act of kindness will make a difference. If you're able to help by providing a meal, we would be so grateful. If delivering a meal is difficult, my husband, Nick, or I would be happy to pick it up and deliver it for you. If you have any questions, please don't hesitate to reach out. Thank you so much for your love, generosity, and continued prayers for Aaron, Kristen, Karsyn, and especially Colson as he courageously faces this surgery. We know he is a true warrior, and we are believing for a successful surgery, healing, and strength for the entire family. I've also included a message from Kristen below that explains more about Colson's condition and what he will be going through. Many of you have asked about Colson's heart and what his upcoming surgery is for. I know his diagnosis can be confusing, so I wanted to explain it in a way that's a little easier to understand. Colson was born with one of the most complex congenital heart defects imaginable. Most children with congenital heart disease have one major defect and maybe a few smaller ones. Colson was born with several major defects, along with multiple smaller ones. His official diagnosis is: • Heterotaxy Syndrome • Unbalanced AV Canal (left ventricle dominant) • Double Outlet Right Ventricle (DORV) • Subvalvar Pulmonary Stenosis • Total Anomalous Pulmonary Venous Return (TAPVR) • Dextrocardia • L-looped ventricles • Asplenia (born without a spleen) • Intestinal malrotation In simple terms, his heart is on the right side of his chest instead of the left. During early pregnancy, every baby's heart starts on the right side before it twists, turns, and settles into its normal position. For reasons we'll never fully know, Colson's heart never completed that process. Because of that, many of the chambers, valves, and blood vessels didn't connect the way they were supposed to. His organs are also arranged differently because of his heterotaxy syndrome, and he was born without a spleen. Since the spleen is a major part of the immune system, he takes a daily antibiotic to help protect him from serious infections. He also takes a daily baby aspirin to help reduce his risk of blood clots, stroke, and other complications. Colson has already had two open-heart surgeries: the Norwood procedure at just two weeks old and the Glenn procedure when he was almost three months old. These surgeries didn't "fix" his heart because there isn't a cure. Instead, they rerouted blood flow so his body could function with the heart he was born with. His upcoming Fontan surgery is the third and final planned surgery in this series. This surgery will allow blood from the lower half of his body to flow more efficiently to his lungs, taking some of the workload off his heart. Right now, his heart works incredibly hard just to keep up. His resting heart rate is around 130 beats per minute, and when he's running and playing, his oxygen levels can drop, he becomes short of breath, and his lips and skin can turn purple. We are praying this surgery gives him more energy and a better quality of life. Because of his intestinal malrotation, the surgeons will also repair his diaphragm during this operation to prevent it from shifting upward and putting pressure on his heart, lungs, and stomach. When Colson was born, he also had an extremely small stomach. Doctors believed it would never grow and recommended bypassing it completely with a feeding tube. Instead, with the support of his cardiologist, we slowly stretched his stomach over time through his G-tube. Today, he eats completely normally, and his stomach developed beautifully. It's one of the many ways he's proven expectations wrong. Many people don’t know but we were denied by insurance for any kind of feeding or speech therapy since he was already dreamed to be dependent for life on his feeding tube, so I did this at home by myself. From the time I was 20 weeks pregnant, Colson's case has been studied by specialists because his anatomy is so rare. Several hospitals declined to take his case before we finally found the incredible team willing to fight for him. Since then, his heart has helped teach surgeons and future heart specialists because there are very few children with anatomy like his. Despite everything, Colson is the happiest, funniest, smartest little boy. Doctors warned us he could have developmental delays or neurological issues, but he continues to prove them wrong. If you met him on the playground, you'd never know everything his little body goes through every single day. His oxygen levels normally stay between 75-90%. Most healthy people are between 95-100%. His resting heart rate is around 130 beats per minute, while most adults and children are much lower. His body is essentially running a marathon every minute of every day. The hardest part of these surgeries is that his heart must be stopped while he's connected to a heart-lung bypass machine. That machine temporarily does the work of his heart and lungs while surgeons operate. Although it's an incredible piece of technology, it also carries risks, including stroke, organ injury, and other serious complications. Those are the moments that are the hardest for us as parents. This Fontan surgery is the last planned reconstruction available for Colson's heart. It isn't a cure, and he'll continue to need cardiac catheterizations, procedures, medications, and lifelong monitoring. If these repairs ever begin to fail, we may eventually have to consider a heart transplant, which is even more complex because his heart is on the right side of his chest. A permanent pacemaker may also be part of his future, though we're hopeful it won't be needed. Medicine continues to advance every year, and we hold onto that hope. We trust God with every step of this journey, and we're thankful for every doctor, nurse, surgeon, therapist, family member, and friend who has stood beside us. Aaron and I have always tried to let Colson be a normal little boy. We never wanted his diagnosis to define him or cause others to treat him differently. Because of that, many people don't realize just how complex and life-threatening his condition truly is. He isn't just a heart warrior because of the surgeries he's survived. He's a heart warrior because every single heartbeat is a miracle. As we prepare for this next surgery, we'd be grateful for every prayer. Please pray for wisdom for his surgeons, steady hands in the operating room, protection over every organ and every heartbeat, a smooth recovery, and for our sweet boy to continue proving that God has the final say. Thank you all for loving Colson and praying for him. ❤️‍🩹