Our journey really began at our 20 week appointment, when we went in to find out the sex of our first baby. We were so excited to leave our appointment and begin registering for a baby boy or baby girl. During our appointment, however, we were told, “It’s a boy. I see some things are wrong. Let me go get the doctor.” Our world began to spin and those next few minutes seemed like forever. The doctor came in and diagnosed our baby boy, Brady, with hydrocephalus. Within the next 48 hours, we had 4 doctors give us a laundry list of complications that could have caused this diagnosis. Each doctor also asked if we would like to terminate the pregnancy. Our world now felt like it was crashing around us. Every ounce of excitement was turned to fear. We told the doctors that we would not terminate. We knew God chose us to be Brady’s parents for a reason and we were willing to fight for every second of his life.
Brady was born on 1/2/11 at 28 weeks gestation. He had his first shunt placement 2 weeks later. After the surgery, he got an infection, which caused some complications with the shunt. Brady had a 120 day stay in the NICU. His first year included a total of 25 surgeries (10 before he left the NICU), 24 of those were brain surgeries (shunt revisions). The other surgery was for a g-button to allow for a feeding tube.
The first year was definitely the toughest, but our journey continues. Brady has now had a total of 31 brain surgeries. As he neared his 2nd birthday, he began to have febrile seizures, some lasting up to 2 hours. That second year seemed like it was just trial and error with different seizure meds. In August of 2014, he had a seizure overnight. We are not sure how long it lasted, but once we found him seizing, it took another hour and a half to make it stop. This was a bad one. He slept for 3 days and when he woke up, he had lost a lot developmentally. He wasn’t reaching or rolling over or speaking much. At one point we started playing peek-a-boo, and I heard his laugh for the first time in 5 days. During this 3 week stay in the hospital, we requested a follow up with his cardiologist. Due to the focus on the seizures, it had been a year and a half since we had followed up, but he had always just had a minor diagnosis of sub-aortic stenosis. Much to our surprise and to the doctors, the condition had significantly worsened. Brady needed open-heart surgery.
Once again, we had to meet with a group of doctors where we faced more decisions. Doctors were concerned with a major surgery. They weren’t sure if he was ready for it after the big seizure he had suffered. Ultimately we were told Brady did not have to have the surgery, that we could make the best of his life as it was, but without the surgery, his heart would not last a year. We felt they were putting an expiration date on our child. Once again, we chose to fight! We moved forward with the surgery. It was successful! The last report from cardiology was, “Brady has a happy heart.”
Today, Brady is completing his first year of kindergarten. He sees a speech therapist, occupational therapist and physical therapist weekly. He is on the ketogenic diet for seizures, which has significantly reduced the seizures. He sees a Chiropractor and an ABM Practitioner as well as 9 specialists. He has a feeding tube for liquids, but he is eating by mouth. We continue to work on strengthening his core and standing on his own.
Although this journey seems full of challenges, Brady is the biggest blessing we never knew we needed. God has touched so many lives through Brady, including ours. We feel honored that God chose us for this very important assignment. We don’t have to be part of this journey, we get to be part of this journey. Brady’s love and laughter are worth every second of it!