The Best of Friends

by Sara James

  Sophie and Andrew got me through the evenings. Friends and family got me through the days. “Here’s your decaf latte and a turkey sandwich,” offered Andi. “I’ve got chocolate,” said Lisa. Sharon brought a lovely baby bag; Amy, a purse and magazines. “Nothing heavy,” she grinned. And Roberta pulled open the curtains overlooking the East River and assessed, “This plant will make your room look much better.” Ginger telephoned, Mom and Dad visited. My sisters Elizabeth and Susan called every day. But it still seemed there were endless hours to fill and I was restless and bored. For me, that usually meant one thing.

  “This is the NBC operator. Atlanta, are you on the line?”

  “We are.”

  “We’re here, too.” I heard Dateline producer Izhar Harpaz and senior producer Ellen Mason chime in.

  I propped two pillows under my arm, trying to get comfortable.

  “Ms. James? Are you ready for the conference call?”

  “Yes, I am.”

  School started in Atlanta in just a few days and we needed to iron out the final details with the local school board for our story on Teach for America. I refused to fast-forward to the end of September, when I’d need to leave our tiny newborn for a couple of days to fly to Georgia to interview the teacher and her students. I adored this story and somehow, someway, planned to complete it.

  BY THE END of August, I’d been in the hospital for nearly a month and was thirty-six weeks pregnant. While our baby was still one month shy of full term, Dr. Kessler and his colleagues decided it was time to induce labor, because the baby’s risk of contracting an infection now outweighed the risk of being born premature. Andrew and I agreed. I couldn’t wait to meet our child. So early one morning, I was hooked to an IV of contraction-inducing Pitocin for what everyone assumed would be a quick labor. After all, this was my second child and the amniotic sac had been broken for a month.

  But hour after hour, the contractions continued, as the obstetric team carefully added more Pitocin. By midnight there was talk of a C-section but the operating rooms were full. Andrew and I anxiously watched the fetal stress monitor, but our baby seemed perfectly tranquil. Finally, after twenty-four hours, at 6 A.M. on August 28, Jacqueline Elizabeth made her debut.

  Andrew and I looked into the sweet face of our newborn. Just under six pounds, she seemed tiny compared with her three-and-a-half-year-old sister, yet we knew she was a healthy size. Relief and delight mingled on my husband’s face, emotions I knew were mirrored on mine. “Hello, little treasure,” Andrew said. “She’s perfect, just like Sophie.” And she was. Indeed Jacqueline was doing so well she was allowed to come straight to my room. As I held our tiny daughter, leaning forward to breathe in the newness of her, I felt a bright, bracing happiness as if I’d tapped a deep, clear spring. I’d had a child at forty-three, just like my Grannykins. Our family felt complete.

  The celebration lasted less than twenty-four hours. The next morning Jacqueline seemed listless and refused to breast-feed.

  “She’s a little yellow. Probably jaundice,” one nurse suggested.

  The pediatric team wasn’t convinced. “Even though you were on antibiotics, it’s possible Jacqueline contracted an infection. We’d like to do a spinal tap to know for sure.”

  Andrew and I looked at each other. A needle plunged into our baby’s spine. My friend Julie and her son had been in New York a few years before when Tarl had contracted meningitis. Thankfully, he’d made a complete recovery. But I knew from that experience how painful a spinal tap was. So when doctors returned with news that our newborn hadn’t cried, I didn’t know whether to weep from joy or fear.

  While the test showed no signs of infection, Jacqueline still wouldn’t nurse. I willed myself to be calm. Lots of infants got jaundice. Kimber had had it. But I felt slashes of anxiety: stealthy, unpredictable, sharp as lightning cleaving a darkening sky.

  Exhausted, that night I fell into a deep sleep interrupted by a careful knock. The light from the hall outlined an indistinct shape in scrubs, one hand holding a mask.

  “I’m sorry to disturb you, especially at four in the morning. Look, everything is okay, but we’ve moved Jacqueline to the NICU—the neonatal intensive care unit.”

  I sat up on the bed, held on to my knees for support, rocked like a baby. My mouth wouldn’t work properly. My tongue felt swollen. “Why is she in the NICU??” I managed.

  “She was a little blue.”

  “She’s not breathing?”

  “Please don’t worry,” responded the doctor. “She’s fine now. But in the NICU, all babies are hooked to monitors and we have far more nurses. We’ll just keep her for observation.”

  For observation. Such a safe, innocuous term. Little could I know the next four days would be the most harrowing of my life.

  The following morning I stumbled as I gathered together my belongings to check out of the hospital. Maternity clothes, Sophie’s artwork, the plant from my window. But inside the tiny infant carrier, no baby. I wept all the way home. “She’ll be home soon,” Andrew consoled me. A few hours later the telephone rang. “Could you come back to the NICU? Jacqueline is okay, but we believe she’s had a seizure.”

  A SEIZURE. THE word struck like another slash of lightning. I simply could not believe it. This could not be happening. I had a sudden, terrifying image of Jacqueline’s mind shorting, arcing out of control. I pictured wildfires like those I’d covered in California, the hills orange and crackling. My feverish mind clattered, jumped tracks, and now the image was of hurricane winds ripping down electrical poles in a crash of sparks, all this fury unleashed in my baby’s brain. How much did it hurt, the jolt from those mangled lines, everything burning, melting?

  I knew too much. Too much from Ginger. Too much about dear Tish. Her sister. Now our baby. And Jacqueline was only three days old.

  We took a taxi to the hospital and I hobbled into the hospital clutching Andrew’s arm, struggling to walk after a month in bed and an arduous labor. Jacqueline didn’t open her eyes. A feeding tube had been threaded through her nose. One arm was splinted and her tiny hands were salted with pricks from IVs and blood tests. Her head was wrapped in gauze, a tiny cap with a whale spout of wires.

  “We’ve put her on phenobarbital, to suppress any seizures, and that machine is an EEG. It will map her brain waves,” a nurse explained, guiding us toward a machine where a series of lines moved up and down to the unseen conductor in Jacqueline’s mind. It was like trying to decipher a score if you couldn’t read music. The paper had already pooled on the floor, reminding me of the old wire service machines, the day’s news distilled to be ripped and read. “And tonight we’ll do an MRI,” the nurse continued, “to see if there are any…structural issues.”

  I’d been afraid before. Afraid for my own life in remote, hostile situations. And during 9/11 and especially anthrax, terrified for Sophie. I’d endured hours, even days of fear that suffused everything, where you counted a minute by the pulse thumping in your neck. But no matter how dire the situation I’d always been able to spot the crack of light that led to the escape route. I’d never felt fear like this, fear that I would never escape fear. This was a sickening tumble through mile after mile of a briny Atlantic that had no bottom, trapped in a tiny titanium sphere and sinking, endlessly sinking.

  I called Gin.

  “Oh, Sara. How I wish I were there.”

  “Not as much as I do.”

  Ginger was calm, although I knew she must be thinking about Tish, too, about all that she’d seen, about all that she’d told me. But when she spoke, what she said was “Sara, she’s a fighter.”

  In spite of myself, I was surprised. “I don’t know, Gin. She’s so small. Less than six pounds!”

  “Maybe, but she’s your little girl, Sara. She’s a fighter. You’ll see.” But I felt like I was in a free fall, trying to hide my fear from three-year-old Sophie, clutching desperately to Andrew, unable to rescue anyone, even myself.

  OVER THE NEXT few days we learned
a lot about what Jacqueline did not have. The MRI scan of her brain was normal. A second spinal tap also showed no sign of infection. Yet Jacqueline appeared lifeless, as if bewitched, as if the pricks in her arm had come from a spinning wheel and our girl was an infant Sleeping Beauty lying in a glass casket instead of a plastic isolette. Around her, the White Coats flapped and fluttered, chattered and conferred. Perhaps her near-comatose state was a result of the medicine. They reduced the pheno. Jacqueline seized again. They shook their heads, tried another drug, Dilantin, even though they warned us that it might thicken her gums, cause hair to sprout all over her body, coarsen her lovely features. More wicked, wicked spells.

  Our daughter had been in intensive care for a week, but she remained an enigma. Did she have some catastrophic disease? Were the seizures connected to my ruptured membranes or to a lengthy labor? I prayed not. Even with their expensive equipment and state-of-the-art tests, the brilliant doctors were flummoxed.

  I try not to remember those days. They return unbidden, in fragments, pieces of a quilt. A memory here stitched to a recollection there, a shred of conversation connected to an image, scraps of color, broken threads, often out of order, a pattern I knew wouldn’t become clear for months.

  I called Linda, who’d left life at the network to spend more time with her son, Ryan. “Listen, I’m picturing you here at Goose Rocks Beach this summer. Jacqueline healthy. Sophie and Ryan running around. Can you hold on to that?”

  I tried. In mid-September, Sophie started nursery school. I’d looked forward to this day. I hadn’t imagined dashing over from the hospital. And as we met the other parents, Andrew was forced to speak for both of us as I withdrew, afraid of dissolving. Sophie knew something was wrong, even drew pictures of her family without her baby sister. I was glad she’d have three hours a day away from the electrical current of fear and uncertainty. Wearing a pink-and-blue-striped dress and a hesitant expression, she gave us a wave. Then she squared her shoulders, smiled up at her teachers, and never looked back.

  BUT SLEEPING BEAUTY slumbered on. The first week became the second. At the hospital, while I took the day shift, Andrew would come home from work, have dinner with Sophie, then head to the hospital, where he would remain until the early hours of the morning. The sight of him gently holding our fairy-tale daughter in her Medusa cap of wires made me want to weep. Yet holding her was all we could do.

  It was more than Andrew and I could handle alone, and our families rallied, forming a rotating crisis support team. Mom reorganized her busy schedule of piano students and Dad brought his research material for the paper he was writing on theologian Paul Tillich. Their presence was a comfort to us, and Sophie. “You make the best chicken, Granne! And I even ate my carrots,” raved our big girl. And Mom patted Andrew’s arm and told him softly, “It’s hard to be the strong, silent one.” Dad, the professor, offered analogies. “Think of Jacqueline as a diamond and the medicine as a chisel. You’re going to chip away the rock to reveal her true facets, the brilliance of your girl.”

  My sister Elizabeth took time off from her job in development at Saint Mary’s College of California to fly east. A talented singer and music professor, she’d had to start a whole new career after sustaining a vocal injury. My sister’s misfortune had made her stronger. Her hugs were filled with love and loyalty, and she immediately set to work spoiling her nieces. And my sister Susan, herself due in just a few weeks, called daily, and sent us Psalm 91: “…He will cover you with his feathers, and under his wings you will find refuge.”

  When my family could stay no longer, Andrew’s mother flew across from Australia for an entire month, leaving her husband’s side for the first time in their thirty-eight-year marriage. By day Nana laughed and played games with Sophie and visited Jacqueline. “Ah, look at her,” Nana said, her large blue eyes welling with tears when she saw her silent, slumbering granddaughter for the first time. But it was a rare moment, for she was resolutely upbeat. Only in the evenings, after preparing an enormous feast, would Andrew’s mother’s face show the strain, and she’d knit her sorrows into lovely sweaters for her granddaughters. The rest of the Butcher clan called frequently, and we spoke to Andrew’s sister Chrissie every day. A skilled nurse who’d worked with premature infants and in an NICU, Chrissie could translate all we were hearing in the hospital. One night she had a question.

  “Have they tried pyridoxine?”

  “Peer-a-what?” Andrew replied.

  “It’s actually a vitamin, B6. But in Australia, we also use it for seizures in newborns.”

  The New York doctors were polite but somewhat skeptical. Nevertheless, Jacqueline had been asleep and on a feeding tube in intensive care for nearly two weeks. Whether humoring us or running out of options, they gave our daughter the vitamin in addition to her Dilantin. Several hours later a nurse at the NICU telephoned.

  “Come down, right away!” she exclaimed. “Jacqueline opened her eyes. And she’s crying!”

  After endless days of silence, what a sweet sweet sound it was.

  TWO AND A half weeks after she was born, Jacqueline was finally well enough for us to take her home. We tucked her pretty pink and white frock into her car seat, took pictures of her and Sophie with the beaming nurses. I finally felt ready to open the baby gifts I’d shoved out of sight, including a soft, fawn-colored blanket hand-stitched with a pink giraffe from Ginger, Nad, and Kimber. Now both girls had a touch of Africa in their rooms, for they’d already given Sophie a beautiful karakul rug bordered with elephants, rhinos, and giraffes. Every eight hours we administered our daughter’s two medicines, a small price for having her home with us.

  But a few days later the telephone rang. Jacqueline’s doctors had decided she no longer needed Dilantin, with its potentially serious side effects for newborns.

  “You want us to stop cold turkey?” I asked, anxious to know if I’d heard correctly.

  “Yes.” The doctor explained that our daughter was already on such a low dose that the medicine couldn’t be working. It seemed too good to be true.

  In the middle of the night, barely twenty-four hours later, Jacqueline made a strange distressing cry. Was this a seizure? We’d never seen one. Forty-five minutes later we had no doubt. This time Jacqueline screamed as if someone had stabbed her through the skull with a stiletto. And then she began to jerk, short, terrible twitches, once again under an evil spell, her arms and legs moving rhythmically.

  “Andrew, she’s not breathing!”

  “Hang on, she is, yes, yes she is, yes she is! Hold on there, sweetie,” he crooned, cradling our tiny girl as she gasped for air, her pale skin turning a frightening muddy color. And finally the seizure ended and her eyes closed and her labored breathing returned to normal. We scooped her up in a cocoon of blankets and dashed downstairs to the taxi, the fastest route to the emergency room. She had been home three days.

  OVER THE NEXT twenty-four hours in the hospital, Andrew and I would witness our newborn have five more seizures, each precipitated by a shattering scream. The sight of her jabbed and stuck and clapped with an oxygen mask as she struggled to breathe caused my milk to dry up in a day.

  “Please give her Dilantin,” I begged. “She doesn’t respond well to pheno.”

  The emergency room team gave her pheno, the first choice for newborns with seizures.

  Hours later she seized again. More screams, more oxygen. I knew I must look crazy, judging by the increasingly calm expressions of everyone around me. “It’s okay, Mom, don’t worry. We’ve got another med. We’ll figure out mg’s per kg’s—the right dose for your girl,” the doctors tried to reassure me. “And we’ve also hooked her up to video monitors. Maybe we can diagnose her condition from the appearance of her seizures.”

  I slumped at the thought of someone, somewhere, casually watching this tape, slurping coffee and scribbling notes while watching my daughter seize. She wasn’t a cipher, wasn’t a code to be broken. She was a baby, our baby girl.

  Andrew stroked m
y hand. I didn’t recognize myself. The wild-eyed face in the mirror. My shaky hands. The biting sound of my voice. I felt like I must be losing my mind. I called Gin again.

  “How did your mom do it?”

  “I don’t know, Sara. She had four kids and one endless search to find the right doctors for Tish. But she managed and so will you. Look, Sara, didn’t you say doctors told you Jacqueline’s MRI was normal?”

  “Yes. And she’s had two.”

  I could hear her sigh. “Sara, that is great news. That’s not the case with Tish. I wish it were. Once they figure out the medicine for Jacqueline everything will be all right. I just wish I could be there! Do you want Mom to come up?”

  I felt tears well up again. We had been friends so long that Gin’s family now felt like an extension of my own.

  “We’ll be okay.”

  IT WAS SEPTEMBER 21, 2004. Jacqueline’s due date. Instead she was three and a half weeks old and still in the NICU. The new medicine hadn’t worked, and she’d had seizure after seizure. I felt as if I were living a Dateline story. And I hated it. I’d always considered myself a reporter by nature as well as training, instinctively curious. But now I was stripped of everything save the desire to see our little girl get better. After more than 20 years as a reporter, suddenly I didn’t care about chasing stories. Let someone else fly to Atlanta, report on Teach for America. What an idiot I’d been, sitting in my hospital bed, thinking such a thing were possible. I’d lost my balance, and with it my inquisitiveness. I realized I no longer cared what disease or disorder Jacqueline had. I just wanted her to get better.

  Yet even as part of me rejected work, I discovered that all those years of training were impossible to ignore. I couldn’t erase the knowledge of how to ask questions, how to analyze. I was neither dismissive of White Coats nor cowed by them. I was Jacqueline’s advocate, her ally, her mom. No one knew Jacqueline better than Andrew and I, no one loved her more. Slowly I realized that to be the mother of a sick child meant being a reporter. It certainly felt better to walk into the intensive care unit armed with notepad and pen than to sit by her bed and weep. And while I knew that Jacqueline’s case was rare and difficult, and while I was a mom, not a neurologist, the time I’d spent at her bedside had given me confidence in my observations. Andrew and I were convinced our daughter needed to be placed back on the combination of medicines which had allowed her to come home in the first place. The doctors reached the same conclusion, and slowly began the gradual, challenging process of weaning her from one medicine while starting another.