Open-Heart Surgery - The Easy Part

This is a continuation of my series of blogs about becoming parents and being the parents of a medical baby. If you haven’t read the previous blogs about this subject, please consider checking them out.

Part One: https://www.damonwchen.com/blog/becoming

Part Two: https://www.damonwchen.com/blog/tranquility-before-despair

Part Three: https://www.damonwchen.com/blog/very-sad-day

Part Four: https://www.damonwchen.com/blog/medical-baby-djs-first-couple-of-months

Six thirty in the morning. I hear noises coming from our baby monitor. It’s our son DJ, awake, singing and patiently awaiting his parents. Boy did he adapt quickly to his new routine. A couple of months ago, Ishtar was still a stay at home mom and DJ was waking up around eight in the morning. Now, our day start an hour or more earlier. Ishtar has resumed her career in physical therapy and DJ is attending daycare five days a week. The first four days of daycare were difficult anxiously leaving our son as he cried hysterically while the classroom door closed. However, on the fifth day, it was like a switch flipped. DJ walked up to his classroom, knocked on the door with his little fist and greeted his teacher with a big, warm hug. He happily waved and said goodbye as we left. We couldn’t help but be proud of our little warrior. He’s been excited to go to school ever since. This is the normal that we expected when DJ was born and the normal that we have long awaited since DJ’s open heart surgery when he was just two and a half months old.

Exactly two years ago today, October 1st, 2021, DJ had open heart surgery. He was scheduled to have his surgery first thing in the morning. Because of that, he was not allowed to drink any milk all throughout the evening. Before we could even get a cup of coffee, we were told there were a couple of higher priority surgeries that needed to be done before it was DJ’s turn. We kept pulling out our phones to check the time. I can’t remember time ever passing this slowly. Every couple of hours, we were given an update that it was pushed back another couple of hours. Morning came and went. Ishtar and I were getting frustrated that DJ wasn’t allowed to eat and the lack of communication. DJ just patiently lay in bed sucking on his pacifier. If only he were still this patient today. The nurses came by around three in the afternoon and brought us to the surgery preparation room. We spoke to three or four different people and answered what seemed to be the same same series of questions each time. About one hour later, we kissed our baby boy and said a prayer for him. With that, he was wheeled off to surgery. Ishtar and I held each other tightly as tears rolled down our cheeks. DJ was now in the capable hands of Dr. Feins.

The sun was still out as we walked out of the hospital, we were desperate for some fresh air and to have a meal that wasn’t prepared in the hospital. We strolled around the streets that I walked every day in high school, familiar but also strangely foreign. Has it really been fourteen years already? We walked by Avenue Louis Pasteur and there she was, Boston Latin School, just as I remember it. The Longwood Medical District was a big part of my life. I was born here, went to high school here, made lifelong friends here, laughed here, cried here, and even now, it continues to be part of my story. Knowing the surgery would take hours, we took our time roaming the streets and getting dinner, a much needed respite, if only for a few hours, from everything we had been through since DJ was born.

Throughout the evening, we received phone calls alerting us of all major milestones in the surgery. I picked up every call with great anticipation and apprehension. Once we were alerted that the surgery was complete, Dr. Feins met us in the surgery recovery wing and brought us to a family common room. As we sat down, I noticed Dr. Feins was radiating with confidence. The surgery was a resounding success. A deep sigh of relief swept over Ishtar and I. We couldn’t help but smile and thanked Dr. Feins for his outstanding work. It was about nine in the evening now. We continued waiting in the common room with other families eager to see their child, with intrigued eyes behind face masks as our eyes met in passing glances, no one courageous enough to strike up a conversation, even though we all probably could’ve benefited greatly from it.

As we entered our son’s room, it looked like almost every inch of his tiny body was hooked up to hospital gear. His face was swollen from the surgery and he was under anesthesia. There was a complex mix of happiness and sadness seeing him like this. Of course I was happy that his surgery went well and his VSD was now repaired. But there was a deep sadness and disbelief still that this was our reality. Why him? I slowly opened my mouth, unsure of what to say or that he would even hear or understand me. “DJ we’re here and we are so proud of you,” I said quaveringly. I can still feel all the emotions as I write this. We spent some time with him and held his hands as we thanked God for helping keep our boy safe in surgery and guiding all the members of his healthcare team in helping take care of him. We were eager to see him wake up and hold him in our arms again.

The next day, DJ woke up in the early evening. He was groggy at first due to the pain medication. Ishtar and I carefully took turns holding our baby boy. About an hour later, he was rabid as he ingurgitated his first meal post surgery with tears, discomfort and vigor. Upon finishing his meal, his face was dreamy and satiated and as he drifted back to sleep. For the next week, we repeated the pattern of offering milk by mouth every three hours followed up by using the NG tube for what he didn’t finish. DJ was mostly crib bound so we brought him some of his favorite toys. Ishtar and I took turns staying with DJ in the room and sleeping in one of the available hospital hotel rooms, leaving his side only to obtain sustenance. As the days went on, DJ’s oral intaking wasn’t increasing. However, he was getting more and more energy and getting back to being himself. Since his oral intake was not improving, the nurses began teaching us how to use a pump that we would take home with us to feed him through the NG tube. This was something I was afraid of and sure enough, exactly one week after surgery, on a Friday evening in the heart of Boston rush hour traffic, we were discharged from the hospital.

Moving a few feet at a time for an hour and a half, we were finally in our home sweet home. Looking back on it, it’s hard to believe all of this only took eleven days. We were exhausted and longing for our own shower and bed. Whatever routine we built prior to going to the hospital, we would have to start over, this time with the NG tube and pump. The doctors set an expectation for us that post surgery, DJ’s lungs wouldn’t be bogged down and he was going to be a new baby. They expected him to start feeding orally better and better every day and be off the NG tube in a matter of days or weeks. But as the days went on, the light at the end of the tunnel just seemed to be getting dimmer and further away.