As the day went by, Haylie was obviously more and more distressed. She was whimpering and, as evening came on, she began to shiver. Little shivers that grew more intense. This was totally disconcerting, especially because there was nothing I could do but to report it to the nurse, who was not as concerned about it as I was. The incubator was temperature controlled and she assured me that everything was ok. Then why is my baby shivering?
By now, I was also very uncomfortable because I had not nursed all day. My breasts were full of milk and they hurt. I had a panic thought about my milk drying up suddenly (you know, the whole supply and demand thing). Then, Haylie’s IV accidentally came out as the shift changed. Now, we had a new nurse on duty who was admittedly straight off of a week-long road trip and was exhausted. She was there for the night shift.
Things went from bad to worse when she tried, unsuccessfully, several times to start a new IV, and the baby was now screaming, and the monitor alarms were sounding off, and there was quite a bit of blood. Even my mom was starting to lose her cool. We fetched some help, and another nurse was able to get things back under control. But, the shivering continued and intensified through the night, and our nurse was continually nodding off to sleep with her chin propped up in her hand, as she was supposed to be keeping a very close eye on the monitor stats. This baby was in bad shape and everyone knew it.
At some point, I don’t remember exactly when, the results of the blood culture had come back, testing positive for Group B Strep, and an antibiotic was started through Haylie’s IV. Though the results of the spinal tap were not back yet, it was assumed that the same bacteria would be found present there and treatment, therefore, began in earnest. I remember being given a list of warnings for the side effects. Gentamicin is toxic to the auditory nerve and to the kidneys. It was also known to be the most effective treatment for bacterial neonatal spinal meningitis, an infection of the tissues lining the spinal cord and brain. Meningitis causes swelling and inflammation of those tissues. That explained the strange back-arching. She was in a lot of pain and trying to shorten her spine to relieve the pressure there. Meningitis also puts a lot of pressure on the brain, which causes seizures. That explained the shivering, only our nightmare night shift nurse didn’t know this. And neither did we, yet.
When our pediatrician came in to check on Haylie early the next morning, he diagnosed the seizures and started her on Phenobarbital. I remember my mom asking him how long she would need to be on it, to which he replied, “Oh, I don’t know for sure…maybe three or four.”
“Three or four what,” she asked, “days?”
“Oh no, three or four years,” he replied.
We just looked at each other, my mom and I, eyes wide, mouths agape. What?!
It was sometime that morning, Thursday, August 5th, that the pastor of my grandparents’ church came into our hospital room. Grandma and Grandpa Higgins were actually out of the country at the time, visiting friends in Norway, and didn’t know all this news yet, but somehow the word had gotten out and a local prayer chain was started. So, this very kind and gentle man came by to do his godly duty and look after us. I always liked him and the sound of his voice, having visited my grandparents’ church from time to time, especially on Easter and Christmas. He was in the room for only few minutes, getting the details from my mother, when he looked at me and asked me if I wanted him to perform last rites on my tiny baby daughter in her little plastic incubator. I’m not sure if it was the look on my face, or what, but my mom grabbed that man by his white-robed arm and started walking him toward the door, assuring him that Haylie came from good, strong stock and that it wouldn’t be necessary but thank you so very much. She done good. I was about to offer him his last rites and send him off to meet his savior, up close and personal.
We learned later that day, however, that the baby in the room next door, who was three months old and also had spinal meningitis, didn’t make it. She had just died
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.