Early in our pregnancy, we decided we wanted the full surprise. We wouldn't find out the sex of our baby. We were beyond excited about the addition to our family. When I was 3 months pregnant, we learned that something wasn't quite right with our growing baby. That's when the prayer chain began. Over the next several months through numerous ultrasounds, it was discovered that our baby was missing a right rib and right kidney. We were also told that he or she could be born with VACTERL association (a rare syndrome with multiple medical complications), anal atresia, and ambiguous genitalia. We were prepared for emergency surgery shortly after birth.
Jaxx Lee Denny was born May 27, 2011. The operating room was full that day as we all anxiously awaited the delivery of our baby boy or girl. We were prepared for blood work to determine the sex of our baby since we were anticipating ambiguous genitalia. Relief and pure joy doesn't begin to describe the feeling we had when it was announced we had a boy! Although a little crooked, Jaxx seemed to be pretty healthy as numerous physicians checked him out. He was discharged home with us in 3 days, praise The Lord!
Shortly after birth it was discovered that Jaxx had severe congenital scoliosis, missing the right side of 7 vertebrae, missing 6 right ribs, fused ribs on the right side, and was missing his right kidney. The appointments began and he was also diagnosed with thoracic insufficiency syndrome (TIS). We soon discovered Jaxx would require four titanium rods inside his little body to correct his scoliosis and fused ribs so that he would be able to breathe normally. Wow, what a shocker! I don't think we were quite prepared for all that we were about to learn our little guy would need, but we already knew God would make a way.
Our first appointment at The Children's Hospital of Philadelphia (CHOP) was scary as we learned Jaxx would need the VEPTR device. He would need years of surgeries because this device would have to expand as he grows. We also found out he had a tethered spinal cord and would need surgery to correct that. We learned this road would be long and not easy. It was an emotional visit. We were excited because there was something that could be done for our son, but on the other hand, we were scared, wondering how would we make this happen for the years to come. We were worried how we would handle being away from Eli and Leah so often. We prayed and had peace that The Lord would provide exactly what we needed.
Jaxx had his first surgery on February 14, 2012. He had his spinal cord released and everything went great! His recovery was smooth and we were discharged home in just 3 days. Jaxx had the VEPTR device inserted in May of 2012, just shy of his first birthday. He was discharged in 7 days. We immediately could see improvements in his breathing and knew this was the right decision for him. Since then, he has had 5 expansion surgeries. Each surgery is risky and painful. It's so hard to watch him roll into the operating room and hurt the way he does after the surgery. The reward is a few days later when he is running around like a normal toddler. Today, Jaxx is running, climbing, and breathing like a normal toddler should, and for that we are very thankful!
The Lord has made a way for us through each step of this process. Since the very first visit to Philadelphia, we have not paid for the first meal or tank of gas out of our pocket. Our family has a huge support system and prayer warriors. It is through the generosity of this large group of people that we are able to fully concentrate on Jaxx and his needs and not have to worry about financial strains. We are so thankful for each and every person The Lord has placed in our lives.
We are incredibly blessed and can't thank God enough for trusting us with this precious gift. We know Jaxx has impacted many people's lives, even our own. He as changed us. We are now better Christians, parents, and our marriage is stronger than ever. We are thankful that Eli and Leah get to experience life with a special needs brother. I can honestly say it has changed them as well.
Jaxx's prognosis is very good. It's expected that he will lead a pretty normal life. There will be things that may be challenging for him and things that are suggested he shouldn't try, like football. We will not put limits on Jaxx. We will push him to try new things as long as it does not pose a threat in harming him. We still have a long road ahead of us, as Jaxx will have these surgeries until he is finished growing, but we already know this road has been blessed. We thank you for all of your support for Jaxx and our family. Always remember....Jesus loved you first!