Welcome to our CaringBridge website. We are using this platform to keep family and friends updated in one place. We appreciate the love and support we have received since the day one. Grayson was born on June 4th, 2020 weighing 5 lbs.
During our pregnancy, we had some scans that could possibly indicate heart issues. Our team at Mayo took great care of us and explained that we would do an Echo within 48 hours of Grayson’s birth. Within 24 hours of birth, Grayson had his Echo and an EKG. At 24 hours old, not related to his heart, Grayson’s blood sugars were unstable. Within minutes we were told Grayson was being transferred to the NICU because he was not interested in feeding and we needed to stabilize his blood sugars with tube feeding. Following the NICU transfer was more news.
Grayson was diagnosed with a Complete Atrioventricular (AV) Canal Defect (CAVC) which is a large hole in the center of the heart affecting what would normally be four chambers of the heart. Grayson’s heart essentially works as if it has no chambers. When a heart has four properly working chambers, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. With Grayson’s CAVC, that oxygen-rich and oxygen-poor blood mixes as the valves cannot properly route the blood to each chamber of circulation and blood flows to places that it should not, such as the lungs. This not only puts a ton of strain on Grayson’s heart, but also creates a buildup of fluid in his lungs. As his lung pressure normalizes as he gets older, it is harder and harder to keep fluid out of his lungs. Grayson is on two diuretics to help combat this.
Grayson spent 9 days and 8 nights in the NICU after birth due to low blood sugar and an inability to properly feed. Whitney and Alex worked hard with the team at Mayo to get Grayson ready to head home knowing he would need to be back for open heart surgery within 6 months. The goal at home has been to keep him growing and comfortable and love him up as much as possible. Feeding a baby with CAVC is extremely difficult because the extra blood flow to the lungs, which creates a fluid buildup, results in high pressure of the blood vessels and makes Grayson breathe harder and faster than normal which interferes with his ability to feed. They enjoy precious moments as a family of three, but also encounter very scary periods when Grayson is struggling to breathe. He has no chamber walls in his heart. He also has a heart murmur. Due to the lack of walls Grayson has fluid in his lungs and has been on a diuretic since he was about 5 days old. Grayson will have open heart surgery before October to create chamber walls & hopefully relieve his lungs from fluid. Our boy will be joining the Zipper Club!
This surgery has zero room for error as they will be cutting into an artery that is paper thin to create the chamber walls.
On this page, you will see MANY joyful photos of Grayson. We get comments such as, “He’s so precious. He doesn’t look like he has anything wrong with him.” Our doctors prepared us for those comments by explaining that everything else looks great and he will have people fooled with his cuteness.
Similar to other babies, Grayson has those levels to cries or sounds to help gage what needs attention. But unlike other babies, when Grayson cries he needs our attention right away. Grayson’s lungs cannot handle a “fit” because he has turned blue around his lips, his body has turned a purple/red color, he wheezes and/or he has a light cry followed by a clicking type of sound in his breathing. It’s not uncommon for us to have to pull over and take him out of the car seat during one of these “fits”. It’s common for us as parents to see Grayson’s chest rapidly cave in and expand because he’s working so hard to breathe.
During this journey to heart surgery, we are focused on keeping Grayson comfortable and healthy weight gain.
We appreciate your continued love, support and words of encouragement.