So again, all day Thursday, I sat next to that incubator with my hands in the space portals to stroke her head full of black hair and pat her diapered bottom, watching my daughter sleep. She was sleeping now. The Phenobarbital had knocked her out and was apparently doing its job of stopping the seizures. I watched her tiny little bare chest, all polka-dotted with leads attached to multi-colored wires, barely rise and fall. I listened to the steady beeping of the monitor and watched the green zigzag of her heartbeat bounce across the screen.
At some point, someone brought me lunch (my favorite, a Wendy’s chicken sandwich) and I accepted the nurse’s offer to take a quick shower. I was a funky mess. Not far down the hallway was a small shower room, well, shower closet would be more accurate. It was private, if not a little creepy. But it was clean and tiled and I had my sample-sized soap in a wrapper and a thin, white hospital towel. My mom was with the baby, doing her Grammy thing, and I took a few minutes to take care of myself.
I undressed and stepped into the stall and the stream of warm water, being careful not to get my hair wet, and pulled the green plastic curtain closed. I didn’t really know how, but I knew I had to express some of the milk that had built up over the last couple of days of not nursing. The pressure and the weight of it were killing me, and I was super paranoid that my body would stop making milk too soon. So, I pressed and squeezed and somehow found a rhythm that actually worked to make thin streams of white spray from my nipple into the shower water raining down from the rickety faucet above.
Ok, now for the other side.
I emerged feeling better and a little more relaxed. I redid the ratty bun on top of my head, traded out my pajama top for a clean shirt, and headed back down to the room where my mom and my daughter were passing the late afternoon together, under the watchful eye of the nurses. Every so often, they would come in with a little vial of something and feed it into the pump that was flowing fluid through the tubing that led into the IV in my daughter’s scrawny newborn chicken leg. Suddenly, I had a flashback of a book that I had read as a little girl in which Louis Pasteur’s miniature army of antibiotic soldiers, all wearing red coats and holding black rifles over their shoulders, marched through a syringe to fight the gruesome brown army of bacteria monsters. I realized that Haylie’s tiny, fragile, sleeping body was that battle ground at this very moment. Silently, I cheered for the good guys.
I really want the good guys to win.
Afternoon faded into evening, and Haylie’s shivering started up again. Another, this time larger, dose of Phenobarbital was administered. It kicked in and seemed to quiet things down for a while, but then I noticed, with my hands in the incubator, my fingers outstretched for Haylie’s little fists to wrap around, a subtle squeezing like she was gripping my fingers harder. She was clearly unconscious, though she was definitely frowning. The squeezing on my fingers became rhythmic and then it spread to her arms. Oh shit. She was having more seizures and they were getting bigger. I pried myself away and hollered for a nurse, who called to consult with the pediatrician on call. The problem was that they had already given her as much Phenobarbital as they could.
One of the possible solutions, to use another anticonvulsant that could be mixed with Phenobarbital relatively safely, was risky because this doctor had no experience administering it to such a young baby before. But, something had to be done, so he decided to try it. The nurses got busy, calling around for the drug, which they did not have in our hospital. We had a brief moment of celebration when they found it in Martinsville; it could be here in about half an hour. Then, we hit another serious snag when it was discovered that the glass tubing required to administer this drug was not available in the right size for a newborn. Our hospital was just not equipped to deal with situations like this.
By now, the doctor on call was standing there in the room, scratching his head, looking at me with a calm, resigned demeanor that completely unnerved me. There was nothing more he could do. My baby was now pulsing all over, large rhythmic convulsions from her naked little torso all the way through her arms and legs. The seizures themselves are not pretty, but what they indicate, he explained, is the real problem. The swelling and the pressure on her brain were getting worse. She was in grave danger.
What happened next is a bit of a blur. There were a lot of people coming and going and, in the hustle and bustle, phone calls were made in hushed tones. Finally, someone announced that the decision had been made to send this baby to Riley Children’s Hospital in Indianapolis, an hour away. A special pediatric ambulance with a highly-trained team of doctors and nurses was already on its way from Riley to retrieve my little one and transport her to a facility that had the equipment, and the expertise, to deal with the emergency at hand. Everyone was now rushing around getting her, and all her records and equipment, ready to go. We had to stay out of the way now. So, I went out into the hallway, sat in a chair next to my mother, and cried.
From the minute we got the news of the transfer, my mom got busy trying to get my step-dad, John, on the phone. This was around eleven o’clock at night, and he was sound asleep at home, oblivious to the sound of the phone ringing, and the sound of my mom’s voice coming through the answering machine in the next room, pleading, “John, wake up, wake uuuup!” We were going to need a ride up to Riley since there would not be room in the ambulance for anyone but the medical team, not even me. That is what finally shattered my tough lioness shell.
Pappy, of course, arrived just in the nick of time, and we all went in a procession through the winding midnight hallways, down in an elevator, and out into the bowels of the hospital, where we followed another long corridor that finally opened up into a garage. There were several Bloomington Hospital ambulances parked there, and at the far end, a large garage door was open, revealing the dark humid night and a different looking ambulance, the one from Riley Hospital that had come especially for Haylie.
As we approached, there were words and documents exchanged quickly, equipment arranged, and finally her little incubator cart was wheeled up close to the step at the back of the open ambulance. They were ready to take her out of it in order to move her directly into the special bed waiting on board. There was a brief moment when the nurse paused mid-task and looked me in my tear-filled eyes. Instinct moved me. I stepped in, reached for my baby and lifted her up and out of that incubator, bringing her to my face where I could smell her and put my lips on the smooth skin of her clammy forehead. I kissed her gently and inhaled her as deeply as I could for the one beautiful moment that I had the weight of her body in my own two hands. Then, I laid her on that bed. It went up and in as the doors closed, swallowing her up, and that ambulance went screaming away into the night.
I began this blog to share pieces of the book I'm writing about my daughter's courageous march down the path from brain injury to wellness. It's the story of how one little girl overcame the odds, a long list of labels, and limiting diagnoses. I hope it inspires other parents to dream bigger by knowing what is possible.