Our experience with Cincinnati Children’s Hospital began on Tuesday, March 6th, 2012. Our son Matthew was 3 days old and had just been diagnosed with a congenital heart disease. We were scared and anxious about what this meant for our new little boy. Matt had a condition called Coarctation of the Aorta, meaning that there was a narrowing in his aorta which was restricting normal blood flow.The tremendous staff at Children’s was able to explain clearly what the diagnosis meant and what we were to expect. To learn more about coarctation, please visit this link http://www.cincinnatichildrens.org/health/c/coarctation/). We spent 2 days in the Cardiac Intensive Care Unit (CICU) and were discharged with the plan to closely monitor this with his cardiologist and to have surgery to repair the narrowing in 4-6 months when he was a little older. We were thrilled to be taking our little boy home and to begin as a family of four.
Three days later, on Sunday, March 11th, Cincinnati Children’s Hospital saved Matt’s life. On that Sunday morning his breathing became labored and it was clear that he was struggling to breathe. We raced to Cincinnati Children’s ER. Matt was immediately rushed to a trauma bay and within seconds, had more than 15 doctors and nurses working on him. We were not allowed to go past a red line on the floor and had to watch our little boy be put on a ventilator and have many IVs and tubes inserted into him. Needless to say, we have never been more frightened in our lives. The amazing staff at Cincinnati Children’s helped us cope with this traumatizing experience and within minutes of arriving we had a pastor, a patient care representative and a cardiologist standing with us offering water, tissues and a clear explanation of what was happening to our little boy.
We quickly learned that he was in very critical condition. The narrowing in his aorta had gotten dangerously worse and was severely restricting his blood flow, now causing his major organs to start shutting down. The incredible ER staff was able to stabilize him and we were taken back to the CICU. More life support systems were initiated and more tests were completed. Meanwhile, a cardiologist continued to stand beside us and explain everything in a confident, yet compassionate manner. Although we had to keep our distance, Matt was never out of our sight and there wasn’t a second that we had to wonder what they were doing to him. It was decided by a team of pediatric cardiologists and a heart surgeon that Matt needed to have surgery that day to repair the narrowing in his aorta. Within a few hours of arriving at the ER, we were walking down a hallway preparing to say, “see you in a little bit” to our 8 day old son before he was pushed through the operating room doors to have heart surgery. It was surreal, and a moment we will never forget. The surgery was expected to take 2-3 hours. With our parents at our side, we waited and waited until a nurse came to tell us that the surgery was over and that it was a success! Amen.
After the surgery we knew that the road to recovery was going to take time and that there could be complications, but we were so thankful and relieved that his aorta was repaired and that the healing could begin.
The staff at Cincinnati Children’s Hospital in the Heart Institute was nothing short of amazing. We were there for 9 days. While it was not easy, it was the best experience that it could have been thanks to our nurses, doctors and other caregivers. When a small complication arose, we will never forget the cardiologist who confidently looked us in the eye and said, “He is going to be okay. He’s going to go home, do the same things his brother can do, be a normal teenager, play football, and one day eat a whole pizza by himself.” Her confidence and ability to make us remember the big picture was exactly what we needed at that moment. Another time, Brian and I had gone outside to take a walk after a hard day and getting some slightly undesired news. When we returned from our walk, our nurse (Heather) had taken Matt off of the ventilator, which meant that after 3 days—we could hold our baby! Again, it was exactly what we needed at that moment. There are many examples of moments like these. Moments when the doctors or nurses without knowing it, totally met our needs and reassured us that everything was going to be okay.
On Tuesday, March 20th, we brought our little guy home to hang out with his big brother, Jack. We had a rough start, but we were finally together and able to start the journey of being a family of four. Today, Matt is an awesome little guy doing just fine. As I write this, he is 4 months old and weighing a little over 20 pounds. He is surpassing his cardiologists’ expectations. He is fine and has zero limitations. He doesn’t have to take any medication. He only has to follow up with his cardiologist a few times a year and eventually that will decrease. We are very blessed.
With Love,
Alissa and Brian
Please help us in our fundraising efforts. Here is a link to my fundraising webpage: http://giving.cincinnatichildrens.org/netcommunity/alissapease
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THANK YOU, THANK YOU, THANK YOU!
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