Archie's Room, 11/27/2003 Congential Heart Disease

Archie’s cousins Claire and Ellis renamed the Phil Collins’ song “On My Way” from the Brother Bear soundtrack “Archie’s Song.” John and I listen to the CD the kids gave us each night on our way home from the hospital and imagine the day we’ll be able to bring our son home with us. On Wednesday night, the song took on new meaning.

Over the past week, Archie has had several x-rays that failed to show any significant improvement in his lungs. He’s also had quite a few tests that didn’t turn up any sort of bacterial infection. Consecutive blood gas tests revealed that the baby had very high levels of carbon dioxide in his system. According to the neonatologist all of these findings could indicate lung disease, but in a baby of Archie’s size with Archie’s medical history, the findings are more indicative of congestive heart failure.

“We’re going to do Archie a favor and turn his ventilator up a little more,” Dr. Walker told me on Wednesday morning. He must have seen the concern in my face because he added, “In a baby of Archie’s size, the help we’re offering him on a scale of one to ten is a three or four.”

When my brother, Patrick, John and I were visiting with the baby on Wednesday night, a Eucharistic minister from St. Mary’s came by to pray with us. He asked God to watch over Archie and offered us the Holy Communion. The minister offered me the Eucharist last, making a sign of the cross over the baby with the Host before handing it to me. I imagined myself watching this exchange through the glass of the baby’s room and realized how removed from the normal course of things our lives are now.

As the Eucharistic minister was leaving, Dr. Horne came into the room to examine Archie. “What are you doing here so late?” I asked him.

“I went to pick up a pig for dinner tomorrow,” he answered. “We thought about having a more traditional Thanksgiving dinner this year, but wanted to continue our own tradition of roasting a pig. A tradition my father-in-law, who passed away earlier this year, started.”

The lives of doctor and patient become entangled inside the NICU.

“I’m sorry you’all are having another bad day,” Dr. Horne offered, quietly. “I wanted to look at Archie before Friday. Thought I’d stop by on my way to the airport to pick up my son.”

The doctor listened to the baby’s heart and lungs. He studied the way Archie’s chest rose and fell, rose and fell. He breathed deeply, staring at the numbers and lines blinking across the monitors.

“Humor me,” he ordered Archie’s nurse, Pam. “Crank up the oxygen to 100 percent and let’s see what happens.”

We all held our breath as we watched Archie’s oxygen saturation monitor. The number rose from the low 80s to the mid 80s, and then fell back down again. Sensing that the doctor was using this test to make a decision, I look away from the monitor, staring instead at the floor. I was nauseous again.

Dr. Horne explained to us that if Archie had lung disease the extra oxygen would have caused his oxygen saturation level to rise dramatically rather quickly. The doctor asked again about the results of Archie’s various cultures for infection. “They didn’t find anything,” I told him.

The doctor left the room to make notes in Archie’s case folder, promising to return in a few minutes. When he came back he shared with us his assessment of the baby’s latest x-ray. “The lungs looked unchanged. They could indicate lung disease or pulmonary edema,” he told us. “The heart size… was generous.”

John and I nodded. He went on to explain what all this meant in conjunction with Archie’s blood gas levels.

“I’m sorry to tell you’all this tonight and ruin your holiday, but I think it’s time to call Charleston,” Dr. Horne said. “In fact, I’m going to call them on Friday rather than Monday to try to get everything set up for next week.”

“Oh, you’re not ruining our holiday,” John offered, almost consolingly. “I mean, we knew this was coming. This is what we expected, what we knew we’d have to do.”

I was standing beside the baby’s bed. I could only offer a weak smile.

I took a deep breath as Dr. Horne left the room. “Hope you have a good holiday,” I told him.

I looked at John and Patrick. “Good,” John exclaimed, waving his arm in the air. “I’m o.k. with this. Let them take him to Charleston and fix it.”

“That’s right,” Pam replied, nodding.

Smiling, I looked at Pam. “What all of this doctors don’t know is that this little guy is supposed to be here,” I explained. “We didn’t know when I was pregnant, but we found out after delivery that I had some weird sort of placental aberration. He was scheduled to be induced on the 28th, but he decided to come early and that was good because his water could have only broken in this much space or he would have bleed to death.” I was rambling, but it felt good to saw what I was thinking out loud.

Right then Dr. Horne came back around the corner and into Archie’s room. “I know you’all pray, but I’d like to pray for Archie, too, if you don’t mind.”

“No! We don’t mind!” John and I said in unison.

Dr. Horne put his hands on Archie, one on his head and one on his legs, and prayed the same private prayer I had prayed for my son since we learned of his heart defect in July. He asked God to heal Archie’s heart and lungs, and if that were not His plan, then to please guide the baby’s doctors and give them the knowledge and wisdom to fix Archie’s heart and send him home with John and me.

Fighting back tears I marveled that Dr. Horne’s prayer mirrored my own, that he had chosen to use the same words I used every night. Knowledge. Wisdom. Here was another of the odd coincidences that had begun happening to me when I first learned that I was expecting Archie.

When Dr. Horne finished we thanked him and wished him a happy holiday again. He left the room. John came over to the baby’s bedside and put his arm around my shoulders.

When we got the hospital on Thursday morning, John and I entered Archie’s room saying “Happy Thanksgiving, Archie!” We approached his bed and were elated to see the Thanksgiving card the NICU staff had made for us using Archie’s handprint. It read: “Happy 1st Thanksgiving Mommy and Daddy! Love, Archie.” It brought tears to my eyes. I carefully tucked the card inside my book for safe transportation home.