Griffith Family Blog: Adam's Heart

The CVICU was very different from the NICU. It’s more what you’d imagine an ICU to be like – lots of bright lights and medical equipment everywhere. Adam was in bed 17, located in a large room with three other babies. There was an impressive collection of equipment surrounding him – monitors with screens that continually showed his vital signs, and a stainless steel column that had ports for oxygen, air, vacuum, etc. There were also private rooms lining the hallway, and it was heartbreaking to see some of the kids in those rooms. They were typically older, from toddlers to teenagers, and some of them looked to be in pretty bad shape. We would learn later that at least some of those who had a lot of equipment and appeared to be in bad shape were just the opposite. They had recently undergone their surgeries and were on their way to recovery.

It was now well past midnight, and we were dog tired, hungry, and emotionally exhausted. Adam got situated in his new bassinet, and was connected to several different monitors to keep tabs on him. He was not allowed to eat anymore. The doctors were concerned that, because his stomach was not getting sufficient blood flow, the milk would just sit there and eventually cause a rupture. This was tough for us, Katherine especially. We are big believers in the importance of breast milk for babies, and there was a lot of worry that he would forget his breastfeeding skills over the next several days while getting nutrition solely from an IV. The good news at this point was that the prostaglandins were working. His heart rate was still high, but his breathing had settled into a fast but acceptable rhythm. Katherine stayed next to him, and I went home to gather some toiletries and fresh clothes. When I got back, we tried to get a little sleep. The CVICU doesn’t have rooming-in arrangements for the parents. There was a large waiting area on the 17^th floor with a handful of recliners where loved ones camp out. We found the last two recliners, that happened to be right next to each other, and slept for a few hours.

The next day was Friday, and the goal for Adam that day was lots of imaging, and a big conference for us with the doctor. By “the doctor” I mean one of the many cardiologists. At any given time there were two attending cardiologists, three or four fellows, a whole bunch of nurses, and a whole separate team of cardiac surgeons. One of the fellows mentioned they would be doing more echo today, that last night’s four-hour echocardiogram was “cursory.” I think that might have been a stretch (it only took a few more hours), but clearly they wanted to see every possible detail before making any decisions about surgery. Late that morning, we met with Dr. Dickerson. She was the attending assigned to Adam that day, and we liked her right away. She was jovial and very approachable, but inspired confidence after speaking with her even briefly. In fact, we were really impressed with all the staff there. With few exceptions, the nurses in the ICU were caring and competent. The doctors were accessible, had good bedside manner, and spoke to us in ways that we could understand. In our meeting with Dr. Dickerson, she brought two diagrams – one of a healthy heart, and one she had altered to show how Adam’s heart was different. She explained his diagnosis in greater detail, but there had not been enough imaging yet to decide on one surgery now, or two separate ones. A few key things she told us were 1. This was not our fault – nothing we had done during the pregnancy causes this, it just happens. 2. We would be in the hospital 1 ½ to 3 weeks, depending on which operation was performed and how quickly Adam recovered. 3. With the exception of yearly checkups, he would likely live a normal life, not burdened by his heart condition. 4. His surgery had only a 3% mortality rate, and any complications would likely be normal surgery complications like blood clots and infections. Those are scary, but nothing like the risks associated with kids who are missing parts of their heart, multiple holes, etc. His surgery would likely take place the following week on Tuesday or Wednesday, depending on the surgical conference. Surgical conference is a meeting that takes place early every Monday morning, and involves the surgeons, anesthesiologists, and cardiologists. Adam would be “presented” at the conference and a decision would be made as to his surgery date and which surgery would be performed. We left Dr. Dickerson feeling encouraged about his long-term prognosis, but still in disbelief that we were in this position.

We spent the rest of the day holding Adam as much as we could and trying to communicate with other family and friends. We were starting to receive calls, emails, and text messages from several folks. It was the beginning of one of the biggest blessings of this journey – the immense outpouring of love we felt from many, many people. Katherine’s parents extended their trip so they were able to take care of Ben and Katie. A neighborhood friend organized the parents of Benjamin’s kindergarten class to provide meals. She coordinated with parents from Katie’s school to bring meals nightly for the next three weeks. One of our friends from church organized a prayer distribution list. Many friends offered to take Ben and Katie on play dates. Other friends whose kids had endured extended hospital stays gave us helpful hints and empathy. So many people called simply to offer encouragement and help in any way we might need it. We were, and still are, blown away by the showering of love on our family.

Adam's room in the CVICU.