Our Heart Warrior

If you would have asked me just six months ago what CHD was, I would not have been able to give you the slightest definition. Fast forward to November 7, 2019 and it turned our world upside down.

On Tuesday, November 5th, our beautiful little boy made his appearance at 7:22 pm via C-section, weighing 9 lbs. 9 oz and 21 ½ inches long. Michael and I couldn’t have been happier. He was absolutely perfect. Davis and I both spiked a fever and it was a few hours after delivery until I was able to see him. Little did we know, this was all part of God’s plan. Because of the fever, additional tests were run to ensure there were no underlying issues causing it. The pediatrician told us Wednesday morning that he had some swelling around his heart which prevented them from seeing all of the chambers but not to worry, they would repeat the echocardiogram the next day just to be sure. 

On Thursday morning, a NICU team walked into my hospital room and the pediatric hospitalist explained to us that they had to take Davis with them right away. That conversation was a blur. The only thing I heard him really say is that a helicopter was on its way from UAB to pick Davis up and if they did not start an IV drip as soon as possible to keep one of his valves open, he would die. I could not process what was happening. Michael had just fed our perfectly healthy looking child and to have a physician tell us he may die – surely they had the wrong child and the wrong family. Surely this was all a misunderstanding. 

It wasn’t. There was no mistake. I had the nurse call my OBGYN to see if he would go ahead and discharge me. He told me that I had to complete my IV antibiotics through Friday morning. There was no way around it. His first priority was my health and he simply could not discharge me with the high risk of infection. In the meantime, the NICU nurse came back to let us know that weather conditions were too poor to send a helicopter. Instead, UAB was sending their medical team via ambulance to pick Davis up and would arrive within a couple of hours. I waited in the NICU with Davis hooked up to monitors and the single IV drip that was keeping him alive. Michael went home, packed a bag and was back at the hospital ready to go with him when the transport team arrived. The UAB team brought Davis to my hospital room in an incubator before leaving. In that room with our family, a few close friends and the medical team, my father led prayer over Davis and his entire medical team. The Nurse Practitioner squeezed my hand and told me that she was a believer and that our little boy was going to be just fine. I then watched my entire world leave the room and there was nothing I could do about it. Even though we had so many people with us and covering us in prayer, I have never felt so alone in my entire life.

Friday morning, I was discharged and my brother got us to UAB Hospital in record time to meet with the pediatric cardiologist. It was determined that Davis had two Ventricular Septal Defects (VSD’s) and a Coarctation of the Aorta. A VSD is a hole in the wall separating the two lower chambers of the heart. In normal development, the wall between the chambers closes before birth. However, Davis’ did not close. One of the VSD’s was larger than the other which posed a higher risk. A Coarctation of the Aorta is a narrowing of the aorta which delivers blood to your body. This in turn requires the heart to pump harder in order to force blood through the narrowed part of the aorta. Our sweet boy was going to have to have open heart surgery. This news hit us like a ton of bricks. The cardiologist at UAB determined that the best course of action was to transfer Davis to Children’s Hospital of Alabama where they specialize in this type of surgery on infants. Within a couple of hours, we moved over to Children’s CVICU, which we would call home for the next 19 days. The days leading up to surgery are are a blur. We spent our days from sun up to sun down at Children’s. We prayed without ceasing and cried so many tears in Room 407. We didn’t sleep. We didn’t eat much. We simply prayed for a miracle. 

On the morning of November 14th at around 5:30 AM, I was rocking Davis as tears streamed down my face. In less than an hour, they would be coming to get him for open heart surgery. I wasn’t ready. We were told all of the risks associated with surgery and the bypass machine. However, he would also die if he did not have the surgery. I was terrified. In those moments, I looked down at Davis who had the most peaceful look in his eyes. He stared at me for that hour with such peace and calmness that you could hear a pin drop as to say “Mama, I’m going to be ok. Don’t cry.” God knew that I needed that peaceful time with him. It gave me reassurance that he was going to make it out of surgery and be just fine.

Those six hours of waiting were hard during surgery. The surgeon was able to close the large VSD and reconstruct the narrow portion of the aorta so that blood flows smoothly through it. The smaller VSD was left open as the surgeon felt strongly that it will close as Davis grows. It was even harder seeing my 9 day old child lying helpless in a hospital bed hooked up to so many machines with an endless amount of tubes and wires coming out of him. It seemed like time stood still while we waited for him to wake up. This was the most critical time.

The days following surgery were the hardest. While I knew that God had blessed us with this precious boy and he had made it out of a successful and dangerous surgery, I was so bitter. I watched him fight to swallow. I watched him fight to breathe, going back and forth between the CPAP machine and oxygen. I was mad that so many “firsts” had been taken away from us – first car ride, first bath, and first few days at home to name a few. I was mad that I could not take the pain away from him and endure it myself. I was mad that God allowed something like this to happen to us – to happen to our child. What I learned is that it’s ok to be mad. It’s ok to be bitter, sad and feel blessed all at the same time. It was ok to feel the whirlwind of emotions that we felt. God is a sovereign and understanding God. God’s sovereignty means that there isn’t anything that will enter your life that God does not either decree or allow. And nothing will ever enter your life, if you are willing to trust in him, he cannot work out for your good.

Every single day, friends and family flooded us with scripture, prayers, and messages of encouragement. It was those daily reminders that we had a support network of people who loved us and were constantly praying for us. Regardless of our emotions, our faith never wavered. God had his hand in it from the day Davis was born. He knew that Davis needed to be 9 lbs 9 oz to endure the path set before him. He knew that I needed to have a C-section and spike a fever so that the doctors would do further testing and find Congenital Heart Disease. Looking back, God sent several people to us for this difficult journey. He sent the NICU nurse at Flowers Hospital who had the calmest and most sincere demeanor. He sent the Nurse Practitioner on UAB’s transport team who text me updates of my sweet boy on their way to Birmingham, even though it was against their normal protocol. He sent family and friends that dropped everything they had to be with me at the hospital when my husband left to go with our son. He gave us parents that spent two weeks in Birmingham with us until we knew Davis was on the road to recovery. He provided a home to us 2 miles from Children’s when every single hotel was sold out the weekend we arrived. He sent family who made the trip to Birmingham multiple times to bring us items we needed and to make sure we were simply ok. He sent the team at Children’s that not only gave our child a fighting chance but also loved on us and reassured us daily that Davis was receiving the best care possible. He sent a counselor that checked on us daily and treated us as if we were her own children. God knew exactly what and who we would need and equipped us for the most terrifying journey of our lives. 

I have had several people tell us how strong we are and how they could not possibly fathom enduring such a race. I am not strong. I am far from it. November 2019 broke me. Going to the hospital to birth what you think is a healthy baby boy and finding out your child has a critical heart condition is not at all what we had anticipated. We only survived because we had no other choice. We put our faith in God and he brought us through. 

In January 2020, we were devastated to discover that the Coarctation had returned. The aortic valve was dangerously narrow again, with scar tissue squeezing it. Davis needed to have a heart catheterization so that they could balloon the area that was narrow to open it back up. We returned to Children’s for what we had anticipated being an overnight stay. On the morning of the procedure, there was 100 point difference between his upper and lower extremity blood pressure. His upper extremity pressure was over 200 putting him at a high risk for a stroke. The surgeon told us that they simply could not put him to sleep in fear that they would drop his pressures too low and it would cause brain damage, kidney failure or worse, kill him. We were admitted to the CVICU with the goal to gradually drop his blood pressure over the next several days with medication. Davis’ medical team was able to get his blood pressure to what they considered a comfortable place for him and they proceeded with the heart cath. The aortic valve should be around 7 mm. Before the cath, Davis had a 2.2 mm valve. His surgeon was able to open the valve back up to 4.3 mm. While this is not ideal, it was the best they could do until he grows a bit more. After 8 days in Birmingham, we came home to Dothan with blood pressure medicine three times a day and a blood thinner once a day.

Davis still has a long journey ahead of him. He will continue to have doctors appointments every few weeks through his first year of life to monitor his condition. He will have a cardiologist for life. He will have return trips to the cath lab to open his valve back up. We can only hope that the valve grows with him and he does not have to have open heart surgery again. Regardless what happens, we put our faith in the One who already knows the outcome. He knows exactly what we need and when we need it. 

Named after his great-grandmother, Davis is a fighter, just like her. He is our miracle baby, heart warrior, the strongest person that I know and my hero. He defied the odds and broke records during his first stay at Children’s and is still doing so today. We were told he would be on the ventilator 48 hours. He came off within 24 hours. We were told he would need to stay 3 weeks after surgery for recovery. He was released 11 days post-op. We were told he would probably need to go home with a feeding tube or a G-tube. He came home eating out of a bottle with thickened milk. We were told he would have problems gaining weight. He gained 10 oz a week instead of his goal of 7 oz. I know that he will continue to crush goals and grow as the strong-willed child that God has called him to be.

God has big plans for Davis Michael Riddle. He has already touched so many lives with his short time on this earth. His testimony to God’s goodness will be one that we continue to tell for years to come. Congenital Heart Disease affects nearly 40,000 births in the United States yearly. 1 in 4 babies born with a heart defect are critical and require surgery in the first year of life. We will continue spreading Davis’ story in hopes that we are able to reach families who may be emotionally struggling like we were during one of the hardest seasons of our lives.