CHD is very overlooked and grossly underfunded in relation to its prevalence.
Together we can spread awareness and raise funds for life saving research that has saved our baby and many other children with CHD!
Join us in cheering on our heart warriors in this WALK FOR AMAZING! Funds raised are going to the Children's cardiovascular program.
Here's OUR story!
Our baby Fergus was born November 9th 2017. He was born with multiple different heart defects that required immediate intervention so that he could survive. Tim and I found out about Fergus' heart at about 30 weeks gestation. We were referred to the perinatologist for an echo because we recently found out that Tim was also living with congenital heart disease. In September, we walked into our fetal echo appointment expecting and hoping that everything was normal, and Fergus would be fine. To our dismay, we recieved the news that our baby would need to be taken right after birth to keep him alive until they were able to do surgery. A couple follow up echos revealed several different anomalies of his heart. They found a ventricular septal defect, atrial septal defect, bicuspid aorta, abnormally shaped mitral valve with stenosis, a coarctation of his aorta, hypoplastic arch, partial anomalous pulmonary venous return, and a slight dialation in his aortic root. Our hearts were broken and we were beside ourselves that day. We researched so many things about the heart and possible outcomes. None of which were super great, but we tried to stay positive. As we accepted the news, we grew stronger together while I finished my last couple weeks of pregnancy. I would be induced at 38 weeks. We were so afraid to meet our baby, because we knew what would follow. But 38 weeks came and we conquered our fears as we welcomed our son to this world. We cried and cried and cried some more when they took him from us. He stayed in the NICU in an isolette for 6 days, not able to eat anything, or even be comforted or cuddled by his parents who loved him so much. When Fergus was 6 days old, we saw him off to his first heart surgery to repair his coarctation. Seeing him hooked up to so many lines, and watching a machine breathe for him was by far the hardest thing I've ever dealt with. I see pictures of others and think, "wow thats terrible." But when its MY baby, my sweet innocent little baby, who has done nothing to deserve this hell, it really hits you like a ton of bricks. With heavy hearts we wished for the best! The surgery went great! We spent the first month of his life in the hospital, recovering and learning how to eat. During that stay, he slowly progressed, being able to gradually take him off of his TPN and lipids. We got his arterial line in his neck taken out about 1 week after surgery. He had an NG tube placed so he could get nutrition without using up the precious energy he did have, for him to breathe and grow. We traveled back and forth to Minneapolis Children's Hospital, from our home in Hastings to be with Fergus as he recovered. Slowly he learned how to take a bottle, and swallow correctly, as well as coordinate his breathing to do so. While finding friends and family to care for our pets so we could stay with our baby, we were both out on a leave from work without pay. We ate, slept, woke, thought, breathed hospital. That was our life for 5 weeks. Thanks to the Ronald McDonald House, we saved money on meals and a bed to sleep on while we were there. When we finally got to go home, it was rough! Watching our little guy struggle to breathe and attempt to fill his belly with milk so that he could get stronger, was absolutely heart wrenching. But little by little, with lots of patience, occupational therapy, and most importantly: TIME, Fergus was taking adequate volumes to maintain his weight. A couple weeks and a few cardiology appointments later, and here we are, almost off of all medication and thriving like the little warrior he is! I couldn't be more proud to be his momma, with everything he has been through in his short little life already. There is a possibility of future surgeries but he is doing great right now and his heart function is stable at the moment!