So, within our first few days in the ICU, we knew that the meningitis had caused extensive brain damage. And we knew that she was mostly out of the woods. In other words, she wasn’t going to die. But there were still many unknowns and a long course of antibiotics to complete to ensure the infection would not return.
The three weeks we spent at Riley Children’s Hospital went slowly by. It was a lot of long days by Haylie’s bedside, punctuated with bits of drama. The nurses came and went. The doctor stopped by from time to time. I slept and ate and read in a blue vinyl recliner next to her crib as the days and nights blurred together into a sort of suspended timelessness under the fluorescent lights in the air-conditioned hospital, as it hummed with activity. When my mom came to visit, I accompanied her on her cigarette breaks into the humid August oven outside. A couple of times, a family member stopped by to check on us and tried to talk me into getting out to do something “fun.”
But fun for me was receiving the results of the brain-stem evoked visual and hearing responses that indicated Haylie could indeed see and hear. How much? They weren’t sure yet.
Fun was getting to move from the ICU down to the third floor and into a normal ward in the middle of the night, where we shared a room with three other babies now.
Fun was the moment I was finally allowed to nurse my baby again, after many days of pumping my breast milk so they could feed it to Haylie through a tube in her nose. The breast pump was kept in a musty little storage room at the end of a series of long, dark, spooky hallways in that maze of a hospital. I made the ceremonious march there every few hours, knowing that the nutrients in my milk were the absolute best thing for her and gave her the surest chance of a full recovery. And, knowing that if I didn’t pump the milk, that I would very soon dry up and our nursing days would be over for good. Supply and demand, as you know. I was not ready for that. Haylie was only two weeks old now and it was clear that she would survive. I needed to have milk.
Not so fun was the evening I accidentally dumped the contents of my dinner tray all over the floor of the cafeteria in front of everyone, on my way from the cashier’s station to my favorite booth in the corner. I probably wouldn’t have minded them all looking at me if I had actually brushed my hair anytime recently. As if that wasn’t humbling enough, then there was the kind man who asked what my drink was (the drink that lay out in a big puddle, polka-dotted with ice cubes, all over the floor) and returned a few minutes later with a fresh tray. Cheeseburger, fries, diet coke. Humbling because all I had in return was, “Thank you. Thank you so much.”
And there was the episode one afternoon when all of the veins in Haylie’s tiny hands and feet had blown out from the ongoing intravenous fluids and medications, and they had to resort to putting the IV in her head. Right in a spot they shaved on the top of her black-haired head. That was not so much fun. That freaked me out.
As did the shivering and shaking she did one night for no apparent reason, none that the nursing staff could offer anyway. But they took excellent care of her. And of me – the young single mom living in a pair of denim cut-offs, who refused to go stay at the Ronald McDonald house where all the other parents of interned babies went for those long weeks. I couldn’t even imagine that. I didn’t want to miss anything. Haylie was beginning to be more alert as the days passed. She cried (ok, screamed, really) at the touch of cold wipies when I changed her diaper. When I had help, someone to push the IV stand that she was eternally connected to along with me, I could take her for walks out of our room and to the floor lounge, where there was natural light coming in from the large windows overlooking the hospital campus and the city beyond. I thought she was looking around more. She was certainly looking at me when she nursed now, staring deep from those big black Universe Eyes. I looked back at her with this question, “What is it, little one? What is it you came to do? What’s next, huh?”
Well, after completing the long course of antibiotics and passing the full inspection for all of her vital functions, Haylie was finally released from Riley Children’s Hospital at the end of August. What came next is that they sent us home with a prescription of Phenobarbital to be administered twice daily and the very solid-sounding but vague advice to just, “raise her like a normal child.” I covered her bald IV spot with a cute white bonnet my mom had bought her, packed up all my stuff from my temporary hospital-room-corner abode, and toted her home, where it took me another week to get used to sleeping in the dark, in a bed, in a fully reclined position, by myself. There were no nurses here and I was alone on duty with my one-month-old baby who seemed so different to me now. Something had happened. And now, I had to try to put it behind us and move on with our “normal lives.”
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.