SEPTEMBER HEART HERO OF THE MONTH
Written by, Heart Mom Lexie
Like many other families, my husband and I eagerly went to our 20 week ultrasound to find out the sex of our baby. As our OB-GYN was scanning she stopped, put the wand down and said, “I’m just not able to see everything, but this is a new machine and I’m not used to it yet. Don’t freak out though!” And honestly, we weren’t. We had done the screenings and we have no familial history of anything. The tech then came in and after a while she whispered to my doctor, “Yeah, so…” December 8, 2019 is the day we found out our sweet baby boy would be born with congenital heart disease, and a day we will never forget.
We were able to plan our delivery at UNMC and then for our baby to be transferred to Children’s Hospital in Omaha when doctors felt it was time to head over. On April 16, 2019, our son, Asher, was born with congenitally corrected transposition of the great arteries, pulmonary stenosis, a large VSD and mildly hypoplastic left heart. We spent 8 days monitoring him in the NICU and then got sent home without any surgical intervention! We followed interstage monitoring for months after with weight checks, temperature checks, and oxygen saturation checks multiple times a day. We knew surgery was upon us when Asher’s oxygen saturations were down in the 60s and his coloring was no longer pink.
On October 23, 2019, Asher had his first heart catheterization followed the next day by his first open heart surgery of the Glenn, which required him to be put on bypass as they were able to open his single ventricle into one and a half ventricles, as well as a flexible band on the outside of his pulmonary artery. He has since had one more heart cath to balloon his pulmonary artery in April 2020. We are now letting Asher and his heart grow before his next surgery of either a one and a half or two ventricle repair in the coming years.
Heart Heroes has been an incredible support system not only to me but also our family and friends. They provide connections of individuals that have similar situations, experience and input from their journeys, and an ear to listen when you just need to vent, cry, or laugh. We are so incredibly thankful for Heart Heroes and the love and support they show our family, and always supporting Asher!
We truly cherish every smile, every tear, every milestone, every time he learns something new, every tantrum, every giggle, every walk, every snuggle.
We never imagined our life with CHD. Heck, I don’t think we hardly even knew what CHD stood for until December 8th 2019. We will never be the same people nor the family we were before our diagnosis. I remember a friend and fellow heart mom saying to me, “Welcome to the best club no one ever wants to be a part of.” At the time, I had no idea what she was talking about, but once you’re in it, you get it. CHD has changed the journey we thought we would be on as a family, but it has taught us to never take anything for granted. We truly cherish every smile, every tear, every milestone, every time he learns something new, every tantrum, every giggle, every walk, every snuggle. CHD has taught us to live in the moment and be thankful for everyday.
