Open Heart Surgery

I am in the Last Writing Unit for my 5th Graders. When they write, I write. Our unit is about writing memoirs. This was the memoir I started and shared with them.

Sleep is an issue with me. I noticed that when I am not sleeping, it is because I am stressed. Last night, I noticed that I was up every hour on the hour. I can distinctly remember opening my eyes to the clock at 2, then 3, then 4, then 5… I didn’t get much sleep. I tossed and turned and wondered why. “Oh, I thought, I know why. Stress.”

I normally don’t talk about my personal life too much. In fact, I don’t think many people know the true story of little Emmett. He was born 2 months early weighing 4 pounds. He spent two difficult months in the Neonatal Intensive Care Unit (NICU). He struggled with breathing and his heart rate failing, but he managed to come home in a timely manner. No doctor ever told us that one of his heart valves was failing. They just didn’t know.

My husband and I spent countless sleepless nights hearing him snort, not eat, and struggle with every ounce of his tiny body. We thought things would be easier when he was home, but we were wrong. This tiny child questions my ability to be a good mother every day. That’s the thing with babies with special needs, they need so much more love and support. He needs love and support. He requires a ridiculous amount of medicine daily. He requires weight checks weekly. He requires so… much… work. 

Months have gone by, and he has his first appointment with his real pediatrician. The first thing he notices is a heart murmur. For those that don’t know, it’s not that scary to have a murmur. A murmur means an irregular heart beat. Many people live with them every day; however, Emmett, he is not a normal baby. Of course he would have a murmur that needs to be watched with Echocardiograms (ECHOs) every few months. The doctors said to watch his sweating while eating and drinking. Everything seemed fine. Over the next few months, the Echos didn’t show anything new, which was good news. 

Then the sweating happened. In the beginning of May, I noticed Emmett’s sheets were disgusting and wet. When I would feed him in the middle of the night, he would be soaked at the bottom of his neck like he just jogged for a good 10 minutes. I immediately contacted the Heart Doctors. They were concerned and bumped up his regular scheduled appointment from July to May. 

This appointment was scary, and I was preparing for the worst. When you know something is bad is about to happen, you  start to really pinpoint other things as well. For example, I noticed how I was able to actually feel his heart murmur. You could see the heartbeat through his chest. So, I prepared for the worst that morning. That’s how I am. I prepare for the worst, so that when bad news happens, it doesn’t seem so bad. I was prepared to take him to the emergency room that day and have open heart surgery. Luckily, that didn’t happen. The doctor took me into his office to show me his previous ECHO from just 3 weeks prior and compared it to that day’s ECHO. Even I could see there was great change in the way that it looked. 

Have you ever heard some bad news, but not really hear it? The doctor was talking, and I was just in my head thinking about memories or futures that Emmett would have. I could hear him talking, but I wasn’t really sure what he was saying. He was using doctor jargon, and he was blabbing away like the teacher does in the show Charlie Brown. Blah blah blah. 

At one point, I finally tuned in and heard the doctor say, “Emmett requires open heart surgery immediately to repair the mitral valve because pressure is building up and blood is flowing the wrong way.” 

I shook my head and focused all my attention on his eyes. He was serious. This is serious. My little baby isn’t gaining weight, has a valve that isn’t working, and can go into heart failure at any moment. 

Photo Credit: Nikki Ward