2003 Journal Links

I think I know what it’s like to be deaf. Last night they put Archie on a ventilator and the machinery rendered him unnaturally silent. The baby’s nurse practitioner warned us. “The tube will be inserted below his larynx,” Dawn explained. “You won’t hear him cry.” But when Archie woke and fought the tube, scrunching his face to yell out, his arms and legs flailing, huge, hot tears filled both John and my eyes. His cry was soundless except for the beep of the ventilator it produced. Red, digital letters read “PRESSURE TOO HIGH.”

“Shhhh, Archie,” I said, rubbing my baby’s head, by other hand pressing against his back. “It’s terrible. I know. We’re so mean and we get meaner every day. Don’t cry.”

John started Archie’s CD player. The tinkling of piano music filled the small space surrounding the baby’s bed. A nurse explained what she was doing as she suctioned mucus from our son’s lungs, stealing his breath. A piano crescendo rose above our heads. It was as if we were living our life in a movie, the child’s CD the soundtrack of our intertwined lives. The nurse left the room and we sat among the musical notes, our son’s sighs and cries stolen from us. I vowed to always after answer Archie’s fussing or crying with smiles.

Dr. Ohning stopped in Archie’s room. “He looks so much more restful, doesn’t he?” We agreed with the doctor’s assessment. He explained to us how the ventilator was helping Archie. “It’s not breathing for him. He’s doing the work. It just says, ‘You have to breathe at least 20 times a minute and I’m going to help you take those 20 breaths. You are strong enough to take the remaining breaths on your own.’” I nodded. John took off his glasses and wiped his eyes.

“We’re just giving him a break,” Dr. Ohning continued. “We’re letting him rest so that he can gain weight before we send him to Charleston. We want him to have at least three chins by then.” We all smiled.

Archie’s primary nighttime nurse, Judie, dropped in to visit us. She had placed a teddy bear in the baby’s bed before we arrived at the hospital and left a gift for us: a prayer angel. She, too, told us how necessary it was that Archie was resting now that he had the ventilator to help him breath. As we spoke, the baby’s heart rate began to drop, alarms rang and the safe blanket of piano music unraveled. Judie patted Archie’s back. ‘What are you doing, buddy?” she asked. 99 beats per minute… 94 beats per minute… she patted harder. 90 beats per minute. Judie stepped outside the room. “Linda!” she called.

The respiratory therapist rushed into the room. 88 beats per minute. The baby was choking. John and I moved away from his bed. Linda pushed the ventilator tube to the side and suctioned out our son’s mouth. She comforted Archie and his heart rate returned to normal. The alarms silenced. The baby’s eyes were glassy, filled with tears. He looked as us as if we had betrayed him.

During rounds earlier that morning Dawn and Dr. Ferlauto shared their bafflement with me. After 48 hours of antibiotics the baby’s chest x-ray was unchanged. “I’m not buying this infection thing,” Dr. Ferlauto confided, shaking his head. “Have any of your visitors been sick?”

“No, not that I know of,” I answered.

“How about kids? Any kids around you sick?”

I shook my head and shrugged my shoulders. “We aren’t around kids.”

“We could test for RSV (Respiratory Sycintal Virus), but I don’t think it’s that,” Dr. Ferlauto explained. “They already have it upstairs in Ped’s, but…” He shook his head, a perplexed look on his face. “I’m going to call Dr. Horne. He needs to reevaluate his first impression. I’m also going to call a pediatric lung specialist to look at the x-ray to see what he thinks. We’ll continue the antibiotics just in case it is pneumonia, but…” he shook his head from side to side. “Let’s give him a break from C-PAP and see how he does.”

The respiratory specialist came into the room when Dawn and Dr. Ferlauto left. She unstrapped the hat and mask from Archie’s face and placed him in my arms and handed me an oxygen hose. “In case he needs it,” she said. Archie blinked and we studied each other faces. He listened to me as I talked to him. After several minutes my mother rounded the corner to Archie’s room. I handed her the baby and left to call my husband. I knew what was coming and didn’t want to face the conversation ahead without him.

I think Dr. Ferlauto was supposed to leave earlier than usual that afternoon. He didn’t, though. Instead he walked the halls of the NICU, waiting for Dr. Horne. A chaplain dropped by the visit John and me. When Dr. Horne eventually arrived, Dr. Ferlauto and Dawn stood outside Archie’s room, watching as Dr. Horne examined the baby. He listened to Archie’s chest as he breathed. He pinched the skin over the baby’s ribs. He placed his hands on the side of the baby’s bed and stared at the little guy. John and I sat silently by. I tried not to look at Dr. Horne’s face. I didn’t want to read his expressions. My stomach churned sickly.

Dr. Horne left the room to examine the baby’s charts. Dr. Ferlauto spoke to him. “We upped the Captipril, like your notes read, trying to reach your goal.” I sensed something in Dr. Ferlauto’s voice and it made me laugh. The doctors talked as Dawn stood close by. John and I tried to eavesdrop, but we were only able to pick up a word or phrase here or there. Dr. Ferlauto walked away. Dr. Horne went down the hall in the other direction. Dawn came into Archie’s room and sat in an empty chair.

“So we’re going to put him on the ventilator,” Dawn explained. “He needs to rest and we want to make it easier on him.” John asked her what the risks associated with the machine were. She told us that Dr. Horne had gone to call a colleague at MUSC. We talked about Charleston and how they operate on babies much smaller and in much worse condition than Archie. “We get babies here with Down’s who are gone, poof, right after birth. We send them to Charleston just like that,” she offered.

Dawn left when Dr. Horne came back into the room. He, too, sat down with us. He had always stood when talking with us until now. He took a deep breath. My stomach lurched and butterflies fluttered in my chest, displacing the air in my lungs. The doctor explained to us what he had seen in the baby. He interrupted himself, saying “I’m giving you all this information because I think it will make it easier for you to understand what’s going on if you know everything I’m looking at with Archie.” We listened intently to his explanations, trying to memorize each word he uttered.

“I called my colleague at MUSC. I call him when a situation is atypical and I need a second opinion,” he confided. “What we should have seen with Archie, what we normally see in children with Down syndrome and an AV Canal defect, is this.” He went on to describe what we should have noticed in Archie at one week old, two weeks old, three weeks old. “But every baby is different and sometimes things don’t progress as expected. Archie is an atypical case. We’re in agreement that this looks a lot like heart failure. What we’ve decided to do is put Archie on a ventilator to let him rest and gain weight. Right now he’s burning all of his calories and he hasn’t been able to surpass his birth weight. We’re going to watch him for a week and reassess him then. Then we may watch him for another week. We’ll see. But surgery is eminent and we’ll probably send Archie to Charleston in a couple weeks.” I thought Dr. Horne looked as if someone had hit him hard. He took another deep breath. John and I asked questions about Archie’s weight and size. “This will get harder to watch until we can get to the point that we can make it better,” Dr. Horne warned. He got up to leave and we stood to shake his hand.

Dr. Ferlauto came into the room. It was the first time I had seen him without a chart tucked under his arm.

“Do you ever go home?” John joked.

“You’re always here,” I observed.

“I guess it’s hard not to take this home with you,” John commented, smiling. Dr. Ferlauto smiled, too, nodding in response. He, too, took time to explain how the ventilator would help the baby to rest and gain weight.

“I know it’s hard, especially since he was doing so well at first,” Dr. Ferlauto said, sighing. “We’ll send him to Charleston and they’ll plug the holes.”

“And we can bring him back here when he’s five and introduce him to all of you,” I interrupted, laughing in an effort to choke back tears. Dr. Ferlauto nodded fervently and shared in my nervous laughter.

“They may bring him back here to recover after surgery. They do that sometimes,” he explained. “If they do, insist that they bring him back to the NICU. Fight for it.”

John and I nodded. “Well, we’re fighters,” John said.

“I have off this weekend and I’m going on nights next week. I’ve enjoyed taking care of Archie for the last 21 days,” he told us. “I’ll look in on him during nights. I get very attached to my babies.” He was looking at the floor now. I like to think that he was fighting to choke back tears as hard as we were. He stood to leave. No one said anything more. We shook hands. As Dr. Ferlauto walked out the door, I felt as if Archie’s safety net had slipped from beneath him.

John and I stood over the baby’s bed. John kept wiping his eyes. I touched the baby’s lips, memorizing the outline of his tiny mouth. I knew I wouldn’t see it again for a while. John collected our things. James, Archie’s nurse, came into the room and explained to us how the intubation would work, that Dr. Walker would perform the procedure. Someone handed me a tissue. “I love you, Archie,” I said, touching his chest. “We’ll be back soon, later tonight.” John and I left the room. James called to us down the hallway. He came out of Archie’s room, folding something in a napkin.

“Mom, do you want this?” He handed me the baby’s umbilical chord. It had finally fallen off.

“Inny or outy?” John asked.

“Outy, I think,” James answered.

“One in five kids,” John mused. “Archie’s side of the odds.”

“We’re going to hit the upside eventually,” I promised.