The scariest moment in my life so far came when we found out about our son Samuel’s heart condition. The second scariest moment came when we sent him back for his first open heart surgery at only 2.5 months of age.
The days leading up to surgery consisted of lots of doctor visits, daily monitoring of Samuel’s pulse and oxygen levels and helping him gain weight. Since Samuel’s heart was working double time, he needed extra calories to get some meat on his bones, which he had no trouble achieving.
We hoped Samuel could skip the first surgery, but his oxygen levels were too high for someone with his condition. So on June 22, 2020, we woke up early, drove to Cook Children’s Hospital and put Samuel’s most delicate, life-giving organ in the hands of a surgeon.
He was such a happy boy that morning, especially for having had nothing to eat for six hours. The nurses said he smiled at them all the way up until the anesthesia took effect.
The surgery only took 39 minutes. Thoracic Surgeon Dr. Tam inserted a tiny rubber band around Samuel’s pulmonary artery. It’s actually about as simple as it sounds.
I was surprised at my demeanor by this point. Few tears or anxiety. I was relieved think we had made it through the toughest part. Boy was I wrong.
The first day in the Cardiac ICU wasn’t so bad, since Samuel slept most of the time. The second day was much tougher. Samuel had a lot of secretions built up in his lungs. Get bless Dr. Davis, who saw it her mission to help him clear his lungs and to give him thorough attention along with several other needy patients that day. She was a wonderful doctor. Being unable to hold and comfort my baby during his moments of distress was almost unbearable. I was relieved when I finally got to hold him again.
We spent a total of three days in the ICU and one day in the step-down unit.
I took Samuel home optimistic that it would all be downhill from there. Again, I was wrong. The next two weeks were grueling. Samuel cried almost nonstop. The doctors couldn’t identify what was causing it but quickly ruled out heart issues. Perhaps it was subtle pain from the incision intensified by an ear infection, gas buildup, or who knows. Babies can’t exactly tells us what hurts. Regardless, I felt guilty everytime I wished Samuel would just sleep and stay asleep. As a mother, you want to find joy in seeing your baby awake, not asleep.
I’m thankful for the help I received from family (especially my mother and mother-in-law) for caring for Eli and from friends for providing meals. I’m not sure I could’ve survived the two weeks without them.
Once Samuel passed through whatever hurdles were causing him distress, I finally began to see my happy baby again. In fact, he was even happier than before! I could tell he felt better just by simply breathing easier. I looked forward to hopefully a few months of just enjoying Samuel and not worrying too much about a lingering surgery. At that time, the doctor gave us a window of 3-6 months when he would expect the next surgery to happen.
Where we are now (Sept. 29)
Samuel is just over three months post op. We are enjoying a pretty “normal” life as a family of four, navigating life during a pandemic. We have not received word yet about a surgery date, though Samuel’s breathing speed has increased and oxygen sats have lowered some.
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