Two nights later, we had a very bad night, the worst one yet. I was getting used to waking every three hours to feed Haylie and change her diaper, but I was new at this and sometimes it was a little rough. Tuesday night, though, was terrible. Haylie was crying more than usual and louder than usual. It wasn’t quite the “I’m hungry” cry, and it wasn’t quite the “I’m wet and poopy” cry, and it was a bit more intense than the “I hate it when you change my diaper” cry.
After changing her and trying to nurse her, I was perplexed that she wouldn’t eat. She was arching her back, leaning away from me instead of curling up and latching on. But, when I laid her down, she stayed in that strange arched position and just continued to cry louder. I talked to her, I burped her, I rocked her, I walked with her. Eventually, after the sun had come up, I called in the backup.
My mom said I could bring the baby over and she would take a turn, so I could try to get some rest. I gathered her up and delivered her to her doting grandmother, who was happy to oblige, while I curled up on the edge of my mom’s bed to try to sleep. That was early in the morning on Wednesday, August 4th, 1993. What happened next was the beginning of a whirlwind of events that swept me up and forever changed my life, setting it on a course I could never have imagined.
My mom took Haylie, and soon noticed that she was beginning to moan little moans as she exhaled. Instinctively, she got the thermometer and took her temperature. It read 103 degrees rectally, which is high by any standards, but especially for a newborn. She burst into the bedroom and said, “Darci, sweetheart, get up. You need to call your doctor. This baby is sick.”
This was before the pediatrician’s office was open, so I dialed the pager number, listened to the directions, waited for the beep, entered our call back number, and waited anxiously. The phone rang a few minutes later, and it was the good doctor himself, a middle-aged gentleman with a stout build, a warm smile, and a jolly voice. I liked him. He liked babies, you could tell.
I blurted out the situation and he told me to come straight to the hospital, bypassing admissions, and to meet him at the nurse’s station on the third floor. He would be there waiting, as he was already at the hospital making his morning rounds. I nodded to my mom as she mouthed, “Hospital?” And as I thanked the doctor and hung up the phone, she was already getting my stepdad and moving toward the car. We didn’t even take the time to transfer the car seat from my car to theirs. I just held Haylie in the backseat as she arched and moaned, and John drove us to the hospital, dropping us off at the main entrance.
We moved quickly down the main corridor, toward the elevators, and I smashed in the UP arrow. Third floor. Come on, damnit.
At the sight of us rushing through the glass doors of the pediatric wing, the nurse at the front desk stood up, and my mom and I both started talking at once (which was not the first, or the last, time this would happen, by the way), telling her what the doctor had said about meeting him there. They were expecting us and she led us down the hall to a room on the right.
She took Haylie, confirmed the temperature, strapped an identification band on her ankle, and started some paperwork. The doctor had already ordered some testing and within a few minutes my tiny baby was on her way to do a spinal tap to “rule out” spinal meningitis, they said, a common cause of high fever in young babies.
As we waited there in that cold hospital room, I realized that I hadn’t even brushed my teeth and that I was still wearing my pajama top. I hoped this wouldn’t take too long. I was still completely unaware of the precipice we were teetering on.
In the meantime, we were able to talk to the doctor, who explained about the spinal tap procedure, including how painful it is. They stick a long needle deep into the back to extract some spinal fluid in order to test it for bacteria growth. It takes a couple of days to grow the culture and confirm the results.
Simultaneously, they would also do a blood culture, which was quicker, and the baby would need to stay in the hospital for observation. This was serious, potentially very serious. By now, John had parked the car and found us, but he was promptly dispatched again to retrieve my toothbrush and some food. We were going to be staying for a while.
Eventually, Haylie came back in an incubator. She was stripped down to her diaper and had leads and wires all hooked up to a monitor keeping track of her vitals. She had an IV in her foot to administer fluids and something to bring the fever down. I sat down next to the incubator and put my hands through the two holes on the side that looked like space station ports so that I could touch her, and pat her, and comfort her.
It was very disturbing to see my tiny twelve-day-old baby this way and to not be able to hold her close, particularly because she was in that very awkward arched-back posture and was clearly not comfortable at all. Her brow was furrowed, her eyes closed, but she was not asleep. She was moaning. We spent all day in that room and took turns putting our hands into Haylie’s incubator to touch her and let her know that she was not alone.
Mommy and Grammy and Pappy are here. Hush little baby, don’t say a word. Mama’s gonna buy you a mockingbird.
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.