On purpose, there was very little on our schedules throughout the winter so in mid-December when the day of Cooper’s second heart exam came, we were all itching to get outside. It was a cold, cloudy, drizzly day. The winter had officially set in, and it would turn out to be one of the longest, grayest, snowiest winters Utah had seen in a long time. The most snow the state had ever seen, in fact. This was the first time leaving the house with both kids for more than an hour, so I tried to prep the new diaper bag as best as I could to entertain Andi and make sure I had baby supplies on hand for Cooper. We had never been to a heart doctor before, so I had no idea what to expect.
Thankfully, the doctor’s office was only twenty minutes from our house. I knew the plaza well because it was directly behind the hospital that I had delivered both my babies at, and our daughter’s very first pediatrician appointment after she was born was in this same building. I told James the parking lot was always a nightmare and we’d probably be walking a mile in the cold, wet weather to get inside. But instead, we pulled up and found a very close parking spot. This is what some people call a tender mercy, a little bright spot in the day that was very needed.
The doctor’s office was on the 3rd floor. We rode the elevator and found the correct suite number. We rode in silence. It felt like we were going to find out the fate of the rest of our lives. I was surprised to find out the pediatrician office I had been to with Andi as a newborn had moved out, and this cardiologist was in the exact same suite. This made me feel a teeny bit more comfortable. I was impressed by the cleanliness of the waiting area, and even more impressed when we only had to wait five minutes to be called back.
Once in our room, the nurse had us undress Cooper. She weighed him and took his vitals, and then laid him on the table and swaddled him in a special way to keep his arms from tugging on any cords. She then placed electrode patches all over his body. Eighteen of them, if I remember right. You could barely see any of him at all once all the pads were in place. James stood by the table and held Cooper’s binky in his mouth while the nurse worked. I felt scared. There was our new boy, sprawled out on the table covered in medical equipment. He looked like a tiny doll they were playing doctor with, and I wanted to rip the electrodes off and hold him close and tell them to find a different baby.
Cooper did great, as he had done at every doctor’s visit thus far. This first test was an electrocardiogram where they would watch the electrical activity of his heart. It was brief. It took the nurse longer to put on all those electrodes and wires than it did to actually get a reading on the screen. She told us these results looked great, and I settled back into my chair a little bit.
Next we would meet with the cardiologist who would perform the cardiac ultrasound. Dr. J came in and explained a little about what we were there for, and he asked if we had questions. This whole appointment is such a blur to look back on, probably from sleep deprivation and nerves. But I do remember Dr. J was very friendly and upbeat. He smiled a lot and made us feel hopeful. We followed him into the ultrasound room. They had a large chair in the middle of the room attached to the big ultrasound machine. We laid Cooper down, and again his arms were wrapped in that special swaddle and several electrode pads placed on his chest. By now, both Andi and Cooper were getting restless. Thankfully, this room had a large flat screen TV equipped with cartoons for Andi. For Cooper, we took out a binky and did our best to soothe him as he lay there for his ultrasound.
Dr. J worked quickly and efficiently. He told us lots of doctors would do the ultrasound and make you wait for results, but he didn’t like to do that, so he would share what he was finding as we went along. We were so grateful we wouldn’t have to wait around on any more results after that long week of waiting for the karyotype to come back. He moved the ultrasound wand around and clicked buttons on the fancy machine. We shared how his Down syndrome had been a surprise. We shared some of how we were feeling at the time. You could tell this doctor had been doing this a long time, because he listened and responded so thoughtfully. To this day, I’m so glad our son’s cardiologist was Dr. J because of the love and respect we were shown by him. I watched the procedure in awe, thinking about how I’d never been in these shoes and how painful it must be for parents and their children to have to come here on the regular. I prayed silently for good results each time a new image appeared on the ultrasound screen.
After about 30 minutes of the doctor doing imaging and us trying our best to understand what was going on, we were finished. Dr. J liked the way Cooper’s heart was looking. I’ll never forget what he told us.
“You have 100 things to worry about right now, his heart is #99.”
A heaviness lifted off my chest, and I breathed a little easier. I looked at him with teary eyes and thanked him. Really, how could I express gratitude for someone who decided to be a doctor for baby’s hearts and help them when they needed life saving surgeries? We knew about half of babies with Down syndrome would have a heart defect, and it seemed somehow we had been placed in the half that would not have to go through the agony of our son having heart issues.
We rescheduled to be seen again in one year. Dr. J said we could choose if we wanted a yearly follow up, and we both agreed we wanted that reassurance. We thanked the front office staff but James told them as we left, “No offense, but we really hope we don’t see any of you until then.”
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