Wednesday, February 11, 2015

Faces of CHD: Meet Sully

February 7-14 is Congenital Heart Defect Awareness Week. To help raise awareness, spread knowledge and share the effects of this disease, Jayme of The Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home are each sharing one story of a child with CHD every day to showcase the trials, triumphs, journey and heartache of this devastating disease. We invite you to read and share this project to further our voices. Thank you. #Facesof CHD

Sullivan Mark Arndt was born 5/7/14 at 2:01 am. He was all of 4lb, 3.7oz and 17.5 inches long. He turns 9 months old at the start of Congenital Heart Awareness week.

We first learned that our baby would be born with a CHD on 1/18/2014. After our 20 week ultrasound on 1/2/14, we were referred to a Material Fetal Medical Specialist for a level 2 ultrasound. At that time we had no idea anything was wrong, only that our baby was 'measuring small.' However, we later learned that two spots were noticed on the heart during our initial ultrasound. At that second apptointment, they had diagnosed our baby with Tetralogy of Fallot. TOF is a defect that consists of 4 structural abnormalities of the heart. We really had no idea what this meant, or what to expect, and the road to May was one filled with lots of questions, emotions, and more appointments to count as we waited for the arrival of our little man.

Once we learned about our son's heart defect, we decided not to use the word 'defect' and instead referred to the CHD as our son's 'fancy' heart. It is something that has stuck not only with us, but with all our of friends and family as well. Sullivan spent the first 10 weeks in the hospital. He had his first heart procedure at just a day old, a procedure that didn't go as planned and left him on a long road to recovery, especially due to his small size. He went from the CVICU to the PICU to the NICU and back to the CVICU before he had open heart surgery on June 28. His was given a BT shunt and we are currently waiting for surgery for his 'full-repair' that will happen sometime this spring. 

We were able to bring Sully home for the first time on July 17, 2014 and have enjoyed every minute with him! Sully has since grown to 12lbs 13oz. He has the most infectious smile you have ever seen and it is such a blessing and inspiration to us and to those who know him. It has been a journey full of the highest of highs and the lowest of lows, but we have loved harder this past year than ever before. We know these upcoming months will bring on new challenges, but we know we have a great medical team at the University of Minnesota Masonic Children's Hospital, and have an amazing support system of family and friends surrounding us. 

What Does CHD Awareness mean to me?
CHD Awareness means educating those who do know know about CHDs, and supporting the family's that do. People may be aware that defects exist, but it's understanding exactly what is considered a CHD, and know that there are numerous types of CHDs out there - it's not just one thing. Educate them that this is #1 birth defect out there, that there is no cure, and that awareness is the best way to support these inspiring families, heart warriors, and heart angels.Together we can make a difference, and it all begins with sharing our stories.

- Lindsay Arndt (Sully's Mom)
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