“I wish God would let me be born again so I could be born with a whole heart and be a normal kid. I wouldn’t have to get this surgery and I could just play tomorrow.”
This is what my 7-year old daughter said to me the night before her open-heart surgery. It was, as my dad would’ve put it, a preachable moment. As instructed, we had just washed all of my bedding in hot water and dried it extra long to remove any germs so she could sleep in my bed that night. We then scrubbed her down with prescription pink foam soap, cleaned her nose out with a prescription gel, and swished a strong yucky mouthwash in her mouth. It felt like I was preparing her for the slaughter.
Isabella asked me if she could sleep in my bed that night. I usually encourage her to sleep in her bed, but all I could think that night was whether it would be the last night I would have with her or not. The “what ifs” were screaming in my brain and the complications and survival rates the doctor had discussed with us were on a continuous loop. You hear about people having successful open-heart surgery all the time. When it is your seven-year-old child, however, it is hard to remain optimistic.
That night we both laid in my bed looking at the moonlight coming in our window. Neither one of us got much sleep. The 5 am alarm came fast. We packed our car and drove to the hospital. Bella was silent on the drive in except to say how beautiful the city looked during the sunrise. When we arrived in the parking garage of the hospital, Bella asked if we could just sit in the car for a little longer. She told me that she was scared she might wake up during the surgery. She was scared that it would hurt. I held her tight knowing I may not be able to do that for a while.
We went up to the cardiology floor of CHOP and went into the reception area. There was a huge fish tank there and Bella went running over to it. She laughed at the fish and described each one to me. After I registered and told her it was time to go in, Bella said, “I just want a little more time looking at the fish. I’m not ready.” The nurse told her it was time and she cried, “I’m not ready. I need more time.” I assured her that we would still have time before the surgery and convinced her to go back with us to the pre-op room. I wasn’t ready either.
In the pre-op area, I was instructed to cover Bella once again in pink foam, wipe her down, and dress her in a hospital gown. My hands shook as I coated her body with the stuff and I worked hard to hold back tears. We found a movie for Bella to watch as we waited. My mom joined us here and arrived before the surgeon came in to speak to us. 45 minutes before the surgery, they gave Bella a medicine to calm her down. It quickly took effect and she began laughing and yelled out, “I think I can do this! I’ll be asleep the whole time. Hahaha!” She then quickly fell fast asleep. This was before anesthesia was ever administered.
Isabella’s surgeon came in and introduced herself. She was kind and gentle. She talked about loving animals and hearing that Bella loved animals too. She described what she would be doing and about how long everything would take. She assured us that a nurse would check in with us every hour to give us updates. Meeting her put me at ease. She was the right one to do this. I sent up a little “thank you.”
When it was time, the anesthesiologist came to introduce herself(another woman, hoorah!) and let us go with her as she wheeled Bella to the OR. Though Bella was already asleep, my mom and I gave her kisses through our masks and watched as they wheeled her off. My heart pounded and my chest hurt as I watched her go.
Due to COVID, the regular surgical waiting rooms were closed. My mom and I sat on a bridge that connected two parts of the hospital and looked out on the street from the sixth floor. It connected the CICU where Bella would be after her surgery and the CCU where she would be after her time in the ICU. As promised, the nurse called every hour with updates. The first call came to tell us that the surgery had begun. The second call was the hardest. They stopped her heart and put her on the bypass machine. While I appreciate and marvel at modern medicine, nothing is reassuring about the fact that the heartbeat you’ve heard since it was in the womb, that heartbeat that sounded like a symphony, was stopped.
I thought about that first time when I was only a couple months pregnant and my OBGYN turned the monitor on my belly; that moment I heard Isabella’s heartbeat and realized my new purpose in life was to protect it against all odds. The cardiologist told me that this defect happens in the 4th or 5th week of pregnancy. As the surgeon was repairing the defect, I tried to remember what I was doing during those early weeks of my pregnancy. Did I even know I was pregnant yet? Did I do something that caused this? My entire pregnancy and for the last 7 years of Bella’s life, they’ve told me her heart was good. How did everyone miss this? It just didn’t make sense to me. And when you’re child’s heart is stopped, these are the thoughts going through your head. There is a desperate plea for answers.
Isabella’s heart was stopped for just over an hour. It seemed like forever. I eventually turned my headphones on and began listening to Kirk Franklin’s “My Life is in His Hands.” The lyrics start, “You don’t have to worry, and don’t you be afraid. Joy comes in the morning, troubles they don’t last always.” Admittedly, my faith has taken a beating since my dad died. It is nearly numb and nonexistent if I am being completely honest. However, when your child is having open heart surgery, that faith returns fast. It is quite possibly the only thing that held me together that afternoon. And for some reason on this day, it was old Kirk Franklin and Fred Hammond albums that got me through.
The next call I got was to tell me she was off bypass and they were finishing up. Her heart was beating again. She was breathing on her own. I took a huge breath. It felt like the first breath I took in days. After another two hours and two phone calls from the nurse, we got a call saying Bella was in her room and asking for me. I took another huge breath. She was done. I looked at my mom who broke into tears of relief.
As we entered Bella’s ICU room, I saw her tiny 42-pound body in the huge bed with what looked like dozens of tubes and wires coming out of her. It was like I was seeing my baby for the first time. She looked so helpless and frail. She kept trying to open her eyes but she couldn’t open them. She let out little moans and asked for me. I took her hand, crouched beside her bed, and, through tears, sang her favorite, “His Eye Is on the Sparrow.” We had a long way to go, but she was still with us and she was more beautiful than I ever remembered. It was at that moment that she became my hero and a true heart warrior.
Stay tuned for her recovery story……