January 30th 2017 - a day I will never forget. There are a handful of moments that occur in every person's life that no matter what you do, you remember these moments down to the smallest detail. If you're lucky, most of those memories will be good. Getting engaged, your wedding day, finding out your wife is pregnant, etc. On January 30th 2017, my wife and I were forced to accept one of the most devastating realities a person can endure - Something was seriously wrong with our unborn child.
I'll never forget the call. It came in towards the end of our morning planning period that day. Our small family of three, soon to be four, had just moved into our dream home, celebrated our son Gunner's 1st birthday, and with our 2nd son Maddux on the way, my wife and I were on cloud nine and couldn't be happier.
I don't remember exactly what was being talked about that day in our 8th grade planning room, but I remember I was laughing as I went to answer the school phone. It was our front office secretary Marla who told me that Whitney was on the other line, had been trying to reach me on my cell, and was very upset. My heart immediately dropped through the floor before I even heard Whitney's voice. I already knew something was terribly wrong. She was delirious and struggled getting the words out, but I heard them clearly enough -"the doctors found something wrong with Maddux' heart."
The next several hours, as I remember them, remain a blurry terrifying mixture of speeding towards the doctor's office, attempting in vain to comfort Whitney, googling heart defects, and getting sympathy hugs from doctors and nurses I had never met. I had never heard of tetralogy of fallot or pulmonary atresia, but the doctors' faces told me everything I needed to know about Maddux' newly discovered condition.
For the next few months, my wife and I were empty shells. Any attempt at appearing remotely happy either brought on feelings of misplaced guilt or became a near total facade to hide the fact from our friends and coworkers that we were both scared out of our minds for what the future held. Then finally came the day that almost made me forget about every negative thought and emotion that I had experienced since January 30th. Maddux had finally came into this world via c-section on Friday May 19th at 7:34am, and for a brief moment when I first laid eyes on him, I completely forgot anything was wrong at all. He was perfect and I was beyond proud to call him my own.
Reality quickly set back in. Within minutes, Maddux had to be taken from us to begin prepping him for his initial surgery. We knew ahead of time that it was going to have to be done this way, but that didn't make it any easier. After spending a few hours in Northside's NICU, a cardiologist informed us that they had found a new complication involving the left branch of Maddux' pulmonary arteries. Once again, terror and hopelessness gripped Whitney and I as we were told Maddux would need to be taken to Egleston within the hour. To make matters worse, due to a new liability policy, the hospital was not allowing Whitney the opportunity to go see Maddux at Egelston. I won't go into detail about what happened next other than to say that it's never a good idea to come between a mama bear and her sick cub! Just 32 hours after being cut open for her c-section, armed with our OB's written consent to be discharged, Whitney and I were leaving Northside to be with Maddux!
We learned a couple days later that Maddux would be having surgery that Tuesday around noon. The next few days were happy ones as we were able to spend a lot of time holding and loving on Maddux. The nurses and doctors at Egleston were awesome and even though surgery was looming, we were enjoying our time with our new baby boy. Then came the day of surgery.
Looking back, I can honestly label that Tuesday as the longest day of my life. Surgery was only supposed to take four hours. It ended up taking twice as long but felt like an eternity. As time kept crawling further and further past the four hour mark, we couldn't help but think things weren't going as planned and eventually, even my optimism turned to frantic worry. I have no idea how many times I prayed to God for strength and patience, but at around 8:30pm, he answered in the form of a phone call from one of Dr. Kanter's assistants. Maddux was out of surgery and was doing just fine!
There is nothing in this world that can prepare you for seeing your child in pain. I thought after having several months to process everything, I would be able to somewhat handle it knowing what to expect ahead of time. I had seen countless pictures, had several conversations with people that have been through this exact same diagnosis, but when the moment of truth hit, it wouldn't have mattered if I had a million years of research under my belt, when it's your own flesh and blood hooked up to a couple dozen tubes, wires, and computers, things become very real very quickly.
At this very moment, Maddux is still hooked up to most of those tubes and machines and is still fighting everyday to ween off of another tube or another type of medicine. So far, he has shown steady progress and the doctor's say he's right on track. It's very hard, but that progress and positivity is what we are trying to stay focused on. In the meantime, we will continue to pray that the day he gets to come home gets here sooner than later. I might be a little biased, but there is definitely a strength of spirit with Maddux, and I can't wait to see how his story plays out as he takes that strength out into the world.
Maddux will need more open heart surgeries throughout his life, as his heart grows. But today at this moment in time he is a very smart, spirited and strong-willed almost two year old who brings so much joy and laughter into our home.