Anthony is a bright independent, curly haired two year old. Our heart hero loves planes, helicopters, tigers, and sharks. He loves to wrestle and tackle his older brother Ian. He goes everywhere with his little blue blankie, and his hugs and kisses can make your day. He likes to cuddle and listen to mom sing his Precious Moments song book to him before bed. He and his dad like to watch football together and be weird together. He calls them little trees. He also LOVES the color orange, and watching the magic school bus, and catching him singing the theme song to it, is many times the highlight of our day. Above all, the best thing about Anthony is his laugh- the one that only Ian knows how to get out of him.
On April 29th 2011, Anthony was born. Besides a genetic disorder, biotinidase deficiency that is able to be successfully treated, he was a happy healthy boy.
In January 2012, his doctor found a loud heart murmur. Anthony was set up with cardiology who ordered an echocardiogram. As the echocardiogram went on, more and more people came into the room to look. The doctors looked at the screen and spoke to each other for a long time. When they glimpsed down at him, we caught him with a sparkle in his eye and a huge mischievous grin. The doctors and residents couldn't help but to keep peeking down and quietly laugh as his smile got bigger and bigger, and his beautiful spirit shone through their discussion about what they saw on the screen.
On the screen, we could see blood gushing back and forth through a hole in his atrial septum. Ant was diagnosed with a large (12mm) atrial septal defect (a hole in the wall between the left and right atria) which would need surgical repair. Without surgery, the progression of the disease would lead to heart failure. The options included a less invasive catheter procedure (a device threaded through the groin, opening up like an umbrella to close the hole), or open heart surgery (to stitch a patch over the hole).
The plan was to monitor frequently, and decide on and schedule the surgery between his 3rd and 4th birthday, allowing him to grow stronger, and hope for the hole to close.
In July of 2013, many appointments and chest x-rays later, his growth has stalled, and his heart is significantly larger than hearts of healthy children his age. Another echocardiogram showed a large left superior vena cava, and the rims around the hole were not good- this made the catheter procedure no longer an option. After an electrocardiogram the cardiologist decided to schedule the surgery.
Anthony's open heart atrial septal defect repair was scheduled for November 25th 2013.
In the meantime, throughout all this, the waiting, the normality of life, was weighing on us. Even though things weren't normal with him, they seemed normal. We would take road trips every few months to go to appointments at Mayo which could take a couple of days, and has its costs. Conversations were many times dominated on Anthony's health, or we would go through times when we didn't talk about it for a long time, almost like we were in denial that it was happening. It is hard to process that something so traumatic is going to happen to your little boy, and live life like normal at the same time. The anticipation of something so harsh that you want for your child to get better, and don't want at the same time, is difficult to both think about and ignore.
Also with our priority being work, school and trying to better our position for our family, this experience was teaching us to appreciate the time we have with our children, and to leave them some of that time. We've become more loving, and devoted more time to each other.
Looking for something, or someone, that had to do with, or who knew how we felt we went to a CHD walk. There we met Becky Hunt's family, who told us their story. Her family has been the biggest source of support for us when it comes to this, the way they noticed and welcomed us, and kept in touch was such a relief to our family. Some of the pressure that we didn't even know was there had gone away, just from meeting a family to share stories and love for our children with.
The cake Becky made for Anthony was a delight. With all the money and time being spent on "more important" things than fun, having a heart party for Anthony was something we all needed. She made it in orange creamiscle flavor, which is just so "Anthony", with sugar crunchies as stardust. It was absolutely perfect, and we will never forget the happiness and the smiles it brought to each other's faces that day- we were able to completely forget everything, and spend time with family and enjoy the moments this experience has taught us to treasure, and watch Anthony devour that cake like nobody's business.