by Charles George
I remember our first Christmas with our son, Thomas. It was December 2012. Neither my wife nor myself anticipated being in the hospital, over an hour away from our home, with our son on Christmas day.
Thomas was born at the University of Virginia Medical Center in May with congenital heart disease. His first stay in the hospital was about three and a half months as he went through his first open-heart surgery and another life-saving operation.
The challenges parents face when their infant is in the NICU are paramount! Every aspect of our lives changed.
Upon Thomas’s birth, my wife and I were both told by doctors and nurses that often babies born in the NICU do better when their parents are by their side. After hearing this, my wife and I both made the decision to be with Thomas each and every day while he was in the NICU.
We decided to focus on him, get him well, and hopefully bring him home. We both put the rest of our lives on hold for our son. This meant setting aside both of our careers, all of our daily activities, and pretty much everything that was normal in our lives. The hospital became our community where we lived as a family for the next three and a half months. Finally, through all of our efforts and the amazing doctors, nurses and hospital staff, we were able to bring Thomas home for the first time.
At the end of October, we returned to UVA for Thomas to undergo his second heart surgery. We were told the average recovery time for this second heart surgery was 10-14 days. Surely, we had plenty of time for the surgery and the recovery to be home for his first holiday season and Christmas day.
The second heart surgery was supposed to take about six hours to complete before we could see him again. Handing our baby over to a team of doctors and nurses for a secondheart surgery is not easy. The emotions and stress during this time were difficult and shook me to my core. Because of complications, Thomas’s four-hour heart surgery turned into a 12-hour surgery. Suddenly, he faced another life-threatening situation.
His 10-14 day recovery turned into another three months. Instead of experiencing the joys of his first holiday season at home, as we expected, we watched our son fight for his life everyday.
Each day in the hospital we experienced a wide range of challenges and emotions as Thomas would heal and then have a setback. Getting through these times took an unbelievable amount of endurance, strength and internal fortitude. It challenged every aspect of our lives.
Eventually, Thomas slowly recovered from the second heart surgery. He moved from the pediatric intensive care unit to a room within the children’shospital. I was able to visit our home and pick up the presents that both my wife’s family and my family bought him. Plus, I purchased some gifts to give him from his mom and me.
We celebrated Thomas’ first Christmas in the hospital as a family. We opened presents, we laughed, and we even had a visit from Santa. We celebrated the joy of the day. We celebrated that through all of the challenges, we were able to be present with Thomas. We celebrated the life of our son and that he was still with us to experience the magic of Christmas.
Life continues on while your baby is in the NICU and hospital. Normal daily activities still occur, but everything is put on hold, until another day.For me, the eight months out of the first year of my son’s life that he was in the hospital was the most humbling time of my life. Seeing sick children in the hospital fighting for their lives affected me in profound ways.
Personally, only one thing has challenged me more physically, emotionally, or mentally than experiencing my son’s long hospital stays, and that is watching him die at three years old after complications from his third heart surgery.
Watching my own son in the hospital, I experienced many conflicting emotions at the same time. I was devastated that he was there and that he had to experience the pain and trauma, from the needle sticks, class A drugs, operations, sleep deprivation from nightly interventions, along with all of the other aspects of hospitals stays that need to happen so babies can live. Most of all, I was sad that his heart hadn’t formed correctly, which led to these hospital experiences versus him being at home, growing and developing like most newborns.
But I was also extremely grateful. I was grateful for the technology that gives children who have complex medical challenges a chance at life. Grateful for the hospital staff and nurses, and for the doctors who dedicate their entire lives to helping medically fragile children.
Through all of the challenges and stress of heart surgeries and long hospital stays, I’m grateful I got to experience the joys of a first Christmas with my son and his mom together as a family. Those are memories that I will always have and times that I will always cherish.
About Charles George
Charles George advocates for children with congenital heart disease. Charles’s three-year-old son, Thomas, stayed in the hospital for about eight months out of his first year of life. Thomas lived until he was three years old. He endured three heart surgeries and passed away after complications from his last heart surgery.
Moreover, Charles is passionate about helping purpose-driven entrepreneurs create a lifestyle business by combining publishing with direct marketing. Publishing provides one of the fastest ways to create authority, build influence, and make an impact onpeople’s lives.
Connect with Charles at CharlesGeorge.com, where he discusses topics that involve publishing, direct marketing, growing an audience and building a lifestyle brand. Also, listen to the podcast Charles created that provides hope and inspiration to parents with critically ill children at WalkingWithFamilies.com.