April 6, 2007, Houston, Texas

By Ashley Bourgeois

It was Good Friday. My little sister went in early that morning with premature contractions. I beat my parents to the hospital, found her room, and immediately seized control of the small whiteboard normally reserved for physician instruction and contact numbers.

Desperate times call for desperate measures or, in this case, for a game of Hangman. Brandon, the expecting father, was a good sport. He played along, I believe, both relieved and grateful for the diversion.

Only a few times throughout the game, when Johnie Kay paused to wince, I would notice the green graphing line skyrocket on the black-screen monitor near her bed. I was amazed and almost unsettled by my sister’s calm demeanor. Not at all what I had expected from the wimp I knew, with absolutely no tolerance for pain.

I thought back to the last time I had visited her in the hospital, nearly four years ago. Inwardly, I shuddered, remembering her chalky face and nearly lifeless expression. A thick black line had rimmed the inside of her chapped lips – a visible remnant of the charcoal they had pumped into her stomach. She had stared through me with hollow black eyes that mocked my concern. She did not want me there.

“Ashley? I said R,” Brandon interrupted. “Is there an R?”

I stumbled out of my tangled memories and drew a stick arm. The girl in front of me was a different girl than the one I remembered from four years ago. A healthy girl about to be a mother.

By the time my parents arrived, the nurse had exhausted every medical option in an attempt to keep little Reed “cooking” for at least another three weeks. Delivering a preemie at 34 weeks might not have been so huge a concern, but Reed already suffered from a pre-existing condition.

Only 12 weeks into Johnie Kay’s pregnancy, he had been diagnosed with gastroschisis, a condition that caused his small intestine to exist outside of his little body, emerging through a hole in the stomach. He would require emergency surgery upon delivery, and it had been predetermined that natural birth was not an option.

Even mild contractions placed an unhealthy stress on the fetus, so Dr. Shapiro made the call. An anesthesiologist came to administer the epidural, and I was forced from my sister’s side as she was wheeled into surgery.

In the waiting room, Brandon’s dad and mine spoke in hushed tones while my mother and I sat in kiddie chairs playing gin. We had been there for just more than an hour, knowing that, in theory, the procedure should take about 45 minutes. After delivery, we would have just enough time for a quick peek before they wheeled my sister’s son behind the secure double doors. And then the worrying would start all over again.

After glancing back and forth nervously between the cards and her watch, my mother decided that she would use the restroom in our holding chambers. Brandon’s sister, who faced us from the opposite wall, jokingly suggested that she leave the door open to avoid missing anything. I know my mother must have considered it. Reed would be her first grandchild.

As fate would have it, no sooner had my mother locked the bathroom door, I saw Brandon’s head peak around the corner. His dad saw him at the same time and, as if choreographed, we both got up and out in one swift motion, without a word to the rest of the anxious crew.

I saw two nurses hovering over a covered cartlike contraption at the far end of the hall and knew that my nephew was inside. I could hear the others now, shuffling behind me. I practically ran down the corridor, taking slight satisfaction in the fact that I would be first of the extended family to see him, if you could even call me “extended.” I was her immediate family, so that made me his as well.

Instantly, I fell in love with this tiny, perfect person who seemed to be my sister in baby form, silent and squirmy. He was a piece of her. It is how I imagine I might have felt at 4 years old, if I had been able to fully comprehend and appreciate the little red person my parents brought home and placed in my old crib.

Just as I was gaining Reed, I suddenly felt that I was losing Johnie Kay. Yes, she would always be my sister, but now she was first and foremost a mother. She had beat me to this milestone that I secretly knew I might never experience.

I felt a tug of jealousy that quickly melted into admiration, then awe. To think that I actually believed she might have ever needed me, that she might have viewed me as the stronger one. In a way, I wish the day’s events had ended there.

Later that afternoon, just four hours after his delivery, Reed went under the knife for what we believed should be a fairly uncomplicated procedure. That evening, at around 7 p.m., three surgeons filed into my sister’s recovery room. The overhead lighting seemed to dim, and in its place was a single spotlight on Dr. Levinson’s grave expression. His words were rehearsed but slow.

Gastroschisis was no longer the concern. Upon entering Reed’s tiny belly, the doctors had found that the exposed portion of small intestine had been twisted just beneath the surface of his skin, cutting off the blood supply to the rest of his bowel. That portion of his small intestine, the majority, had been removed.

Reed now suffered from a condition known as short bowel, or short gut. Not only was it a rare condition, but Reed’s was an extreme case. The surgery had left him with approximately 23 centimeters of small intestine – less than 8 percent of a normal length.

Johnie Kay sat alone in her blue-and-white hospital gown and began to cry softly. Brandon sat next to her on the stiff couch with his head between his hands, caught up in his own interpretation of the nightmare. I moved from my post near the wall and took my sister’s hand, sinking silently into the wheelchair at her bedside.

Her eyes reflected a childlike terror as she asked a simple question: “So, um, is my baby going to die?”

It was the single most heartbreaking thing I had ever heard in my life. I couldn’t suppress my own tears, and so I turned to face the doctor.

Even I couldn’t clearly dissect his response. There was no immediate concern for Reed’s life, he said, but Reed’s long-term prognosis would be affected in a major way.

Reed had a long road ahead. When could she take him home? They could not answer that. We sat in a stunned silence.

I could not help or protect my sister. I couldn’t even offer up a worthy distraction. I could only look on, tortured, as she struggled beneath the weight of this heavy truth that forcefully threatened to consume any and every sense of joy the day had to offer.

Four days later, Johnie Kay went home, without her infant son.

Today Reed is four weeks old. Progression in the neonatal intensive care unit moves at a snail’s pace. Bottles of frozen breast milk remain untouched in the freezer, and diaper changes are routine but, for the most part, unnecessary.

“No news is good news.” I repeat to myself that cliché as I sit with Reed on my lunch break, telling him stories about his mom. I will retell some of those stories, once he has learned to make sense of my incoherent ramblings.

As I sit with Reed, I do not see the suction tube that feeds into his tiny mouth or the cluster of intravenous attachments that plugs into his tiny left arm. Instead, I see and feel all the love I’ve ever had for my sister. He is the most beautiful thing I have ever seen, and so I lean close to whisper, “Lucky boy, you take after your mom.”

Ashley Bourgeois currently resides in Houston, Texas, where she spends a majority of her free time with Reed and Johnie Kay at the Women’s Medical Center. She also enjoys playing Tetris, drinking wine, and naming inanimate objects (not always in that order).

Posted by Elizabeth Armstrong Moore on Tuesday, May 15th, 2007 | Email This Post

This entry was posted on Tuesday, May 15th, 2007 at 12:04 am. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.