Jon’s Heart: A Mother’s View – Part 2

Jon’s Heart: A Mother’s View

by Amanda Martin

 

Part 2

 

Jeff and I decided to be alone in the delivery room. We were warned we would only get a few moments to hold Jon before they had to bring him down to the Neo-natal Intensive Care Unit (NICU) and we wanted to savor it. Our families respected our decision but wanted to be there for us if we needed anything so they gathered in the waiting room.

It was like a weird dream. One moment he wasn’t there and the next he was in my arms. A few moments later, they were taking him from me. I insisted that I would be fine and pushed Jeff to go with Jon to the NICU. Family slowly came in to give their congratulations and were excited they got a peak at the little guy on his way down to get checked out. I was surprised when Jeff, a nurse, and Jon returned back to the room. His oxygen was better than they expected so I was able to get a little more time with him and the family was able to meet him. Then back to the NICU he went after about ten or fifteen minutes and that’s where he stayed for a week. The hospital allowed us to stay in an empty room in the basement after I was discharged.

Before we could leave, I was trained on how to record his weight, when to feed him, how much he needed to eat, to record the frequency and volume of his bowel movements, test his blood oxygen saturation levels, and to relay my data to a team of nurses. Seven days after Jon was born, the three of us left the hospital. Overwhelmed and not knowing what was coming next, we had started this adventure we knew we would have to take.

After two weeks at home and three weeks since Jon had been born, I noticed his oxygen saturation levels lowering. We took him into his cardiologist and it was decided that it was time for his first surgery. We left the next day down to Lucille Packard Children’s Hospital on the Stanford Campus in Palo Alto. We checked into a hotel and throughout that week brought our son in for a series of tests they had to get done before they could operate.

There was no turning back. For months we had been preparing for this moment….

The surgeon and his team allowed me to carry my four-week old son into the operating room until he was sedated. I let go of his little hand and waited until I reached the hall where Jeff was waiting before I fell to the floor and cried. I gathered myself off the floor. The nurse led Jeff and I to a waiting room where we would wait for updates. Again we had asked for our space with our families. Insisting they wanted to come just for support, I said no. I didn’t want other people’s emotions on top of my own. I just could not let myself free of feeling like I had to be strong. So, alone, Jeff and I waited. With every opening of the door our bodies stiffened waiting to see if they were coming for us.

Finally, our time came when they updated us with news that the surgery was successful. The nurse told us it would probably be an hour until we could see him but until then the surgeon, Dr. Mohan Reddy, would be in to give us all the details, then someone would take us to our son. Nothing, and I mean nothing, could have prepared me for seeing my now six-pound son lying on that hospital bed swollen as far as his skin would stretch, tubes everywhere, a giant incision down his tiny chest, and a room full of people trading information on what he had been through and what the medical plan was going forward.

I tried to never leave his side. I left for shift changes and to get an hour or two of sleep and then I was back. The first two days he had a private room. I had left for a quick shower and returned to Jon being moved to what is called the pod. It’s about ten babies in a giant room. Beeps from all the monitors and bright lights were hardly a good place for recovery, but I sat myself down on the tall chair next to my son. I watched babies crash around me, having to be rushed out so that medical teams could save their lives. Some babies were left alone with only nurses to care for them because their families had to work or take care of their other children. It was depressing. About three weeks later, I was told that we were getting ready to be discharged but before we left I would have to get training again on how to keep his incision clean, how to administer his medicines, and what to look for in case of problems.

Long story short, we got home and stayed doing our same routine of feedings and medicine. Family and friends visited for a week or so but had to be put on hold when Jon was put on a feeding tube and puked after every meal; a symptom of his heart failing. Most days I sat in puke soaked clothes just holding and trying to console my baby. If anyone came to the house, they had to wash their hands and wear masks. At four months of age Jon went back for his second surgery. We felt like we had just left and were still trying to recuperate, but off we went back down to Palo Alto. Another week’s worth of testing and staying in a hotel, just trying to keep our little boy comfortable, trying to keep every ‘what if’ scenario out of our heads. The day of the surgery came. We waited in the waiting room for a few hours, then in the room where they prepare the patient for surgery for a while longer, when we heard a loud alarm. Code Blue. We understandably were bumped from our scheduled surgery time. I understand that now, but in the moment I just cried. I wanted it to be over. All the waiting and planning, the stress that comes with that day, and we had to do it all over again. We were moved to a few days later. We waited in the same waiting room we had been in just months before. Hours went by as Jeff and I snuggled under our sons blanket we had waiting for him. When it was time to see our boy, we rushed to his room where we were informed of his state and what the new plan was. Jon was a champion. They said that the surgery went textbook. It was pretty much the same as the first time. Jon had his own room for a day or so then was moved to the pod. It got harder and harder to leave him when the shift change came because he was much more alert this time. He knew when we were there and when we weren’t. We mainly had wonderful nurses that would assure us we were okay to take breaks and go back to the hotel to sleep, but one day, after Jon’s blood transfusions, we had a traveling nurse who went on break. I noticed my son was in pain and made the covering nurse check him. A blood embolism had formed and was the size of half an egg on his little leg and hard as a rock. She tried to act like it was no big deal that the other nurse didn’t see it in his scan but I could tell it was a very big deal and I was not happy. I made a scene and let’s just say that the nurse was not seen again during our stay. Other than that and a romantic wedding anniversary we spent by the bed of our son, it was pretty much like the first recovery. This time being discharged, I was a little more enthusiastic. We had until Jon was three years old for his next surgery. I didn’t know what that time would look like but I was ready to find out.