We were at his two month old check-up with a pediatrician we had just met for the first time. As proud parents, we showed off our good-natured, chubby baby for Dr. Soares, who reminded me of a grizzly teddy bear. Dr. Soares joked and maintained the usual conversation with first-time parents until he listened to our baby's heart beat. He listened again. And again. I wasn't worried. Certainly nothing could be wrong with our delightful miracle baby. And then he order an EKG. And then he sent us to the hospital for blood pressure tests on our baby's tiny arms and legs. And then he gave us the name of a qualified and respected pediatric cardiologist.
We were first time parents. We didn't know that it was unusual for a baby to sweat profusely whenever he nursed (it was a hot and humid New Hampshire summer). We didn't know that a baby should kick his legs more. We didn't know that a baby shouldn't sleep so much (we thought that was good) or take so long to nurse. We thought we were holding him too tight when his legs turned purple.
The day before Neal's check-up, I had interviewed for a new position within the company where I worked. I was on maternity leave for another four weeks, but the position was working on the Utah contract and it was very likely that I would get it. I'd be able to travel to Utah several times a year and take Neal with me. The company had an on-site day care and great benefits for working moms. And I loved my job. At the same time, I really did want to stay home with my baby. We weren't sure how we would be able to afford having me at home, but there wasn't a question of how we would decide after that appointment. Thankfully, I've been able to stay home with my children ever since.
Dr. Rauchenbacher, the pediatric cardiologist, worked out of a hospital an hour away. We became very familiar with the drive to Manchester as we became very familiar with the technical terms of Neal's condition. After additional tests, including an echo cardiogram, it was determined that Neal had a coarctation of the aorta. Essentially, the aorta had a kink in it--like a garden hose--so blood flowed into his upper body at a high pressure and his lower body had very low blood pressure. (Neal claims that this is why he is so smart--all the blood went to his brain when he was a baby.)
The cardiologist wanted to schedule the surgery as soon as possible, insisting that the earlier the coarctation was repaired the better. Boston Children's Hospital was another hour south but the surgeons were very experienced and had excellent reputations. (We were already very familiar with Mass General in Boston. It sometimes seemed like our only trips to Boston were for hospital visits.) The surgery to repair Neal's heart was scheduled for December 6th, 2001.
Neal was five and a half months old by then. He weighed slightly more than 18 pounds. The other babies in our heart ward were tiny, frail, sick things. Even though it took Neal so long to eat--he'd get tired and would have to rest--he was my first and only baby. I could sit and nurse him all day if he wanted and sometimes I did. Thankfully, he continued to sleep a twelve hour stretch at night. Neal was sweet and cheerful. He smiled often and rarely cried. He didn't act sick. He didn't look sick.
The bulk of our family lived in Utah--over 2400 miles away--but Utah Dad's parents, my mom, grandma and sister flew to Boston to support us during Neal's surgery. We stayed in a nearby hotel and were at the hospital at six am for his scheduled surgery. There was an emergency and a delay and it was several more hours before Neal got called in for surgery. Even though he couldn't eat (I thought I might explode before a kind nurse found me a breast pump), Neal was sweet and cuddly and warmed the hearts of his grandparents and the staff.
I generally stay calm and collected in an emergency (it's later, when the tension breaks, that I cry). It was a very long day. I was about to crack. The surgeons cut the kink out of the aorta and then sewed it back together. That's what I remember now. At the time, we listened through all the technical, medical explanations; had detailed diagrams; asked every question we could think to ask. But now, eight years later, I remember only the basics. You can click here for a graphic summary (it's not graphic as in gross).
I remember seeing my little baby son, sedated and covered with countless tubes and wires, in ICU that evening. He looked so tiny then. His nurse was from Utah. My dear friends Sue and MaryEllen traveled from New Hampshire and Maine to visit us. Utah Dad stayed at the hospital that night in a cubby. I returned to the hotel. The next morning, Neal was awake and able to move from ICU to the heart wing. I could stay there with him. I could nurse him again. He hurt and he was sad. But he was brave and rarely cried. His grandparents spoiled him. I rocked him. I sang to him. I sang "Away in a Manger" and "A Child's Prayer". His Aunt DiDi sent a Christmas tree for his room. By the second day he was happy again, unless he had to take his medicine. He was on the mend and our spirits improved. His Gramps bought him a fish balloon that he loved to kick. His smile and laugh returned. We sat in our small corner of the ward we shared with three other tiny babies (that made me want to cry) and visited and joked and laughed. And we realized that we needed to be with our family again and made plans to return to Utah.
Eight years later, I rarely think about his surgery. Neal sees a pediatric cardiologist every few years. He's healthy and strong. He's a smart-aleck. He's a picky eater. He's a tease. He taught himself how to play the piano. He loves space and science and math. He reads Harry Potter. He plays soccer. Yesterday, he went to ski school at Alta. He fell down a bunch but he just kept getting up and he was getting the hang of it. And he wants to be a pediatric cardiologist when he grows up.
Today, I am grateful--grateful to my Heavenly Father for miracle babies; for Priesthood blessings; for doctors and nurses who have been inspired with the knowledge to heal; for family; for friends and especially for my darling, sweet, sometimes-obnoxious little boy.