The nightmare begins Thursday August 12, 1993. We woke up to a pouring down rain. Mom came to help me get ready, and she drove Arielle and I to the doctor's office, (which at the time was across from the hospital). It was still about 60 miles away from where we lived at the time. We got in as promised first thing. They did the normal baby checks weight, measure, and measure the circumference of her head. After her pediatrican looked at her, he told me he wanted to admit her immediately to the hospital to run some tests. He said her head circumference was bigger than it should be and he suspected, spinal meningitas. So scared but in a way relieved, because I knew they were going to do something to help her, we walked across the street to the hospital where they admitted her and begun to run tests. The main one of these being a spinal tap. All of these tests came back negative. Meaning she did not have spinal meningitas. Her doctor wanted to send her on to St Louis to a hospital that was better equiped to run more tests. This made me feel better because I knew that the hospital she was in was not equipped for much. He said a regular ground ambulance would be too rough for her, so he made plans for a helicopter to come pick her up. In the meantime, I called Greg at work and he came to wait with us. A team from St John's Mercy Medical Center came down to prepare her for the flight and to accompany her along the way. She was still small enough to fit in an incubator so that is how she traveled. Once they had her all hooked up and in the incubator, I touched her hand, they lifted the lid and I gave her a kiss, and told her I loved her and I'd be there as soon as I could. Then, after giving us intructions on where to find her once we got to St John's Mercy, they wheeled her off and we followed. Greg, Mom, and I stood outside the hospital and watched them load her and fly off with my baby (that is one of the hardest things I have ever had to do).
Greg and I had to drive to St Louis, there was no room on the helicopter for either of us. Mom went home to get us some clothes and supplies. We had no idea how long we would be staying, but knew it would be overnight since it was already evening by now. We stopped to eat. I don't think I even tasted my meal (but hadn't had anything all day). I watched two women with a small boy while there. Here I had tears streaming down my face because I didn't know what was wrong with my baby, but I knew it was serious. And here these women were being mean to this small boy just because he didn't want to eat. I really wanted to go say something to them, but I couldn't bring myself to do it. Anyway, when we got to the hospital and up to the PICU ward, where we were told to go. We found Arielle in PICU (Pediatric Intensive Care Unit). The doctor on duty was waiting for us. Arielle had already been given a cat scan. So they knew what was wrong just not the cause of it. She stood by Arielle's bed (Arielle was hooked up to so many tubes and wires), and began to tell us that our precious daughter had Hydrocephalus. And asked if we knew what that was. We both shook our heads no. She began to tell us that Hydrocephalus meant water on the brain. BRAIN!!!!!!!!NO!!!! not my baby!!!!!! my mind shreaked!!!!!! Thank goodness Greg was there. My mind shut down I was no longer listening to the doctor. OH I made all the right motions nodded at the appropriate places. But not hearing a word of what else she had to say. Tears were streaming down my face as the fear was setting in. Later Greg had to tell me that they were going to do a MRI the next morning to see what was causing the Hydrocephalus. After the doctor left us a nurse came and asked if I wanted to hold her. Oh boy did I. I asked if I could with all those wires and they said they would help me. Holding her had never felt better than at that moment, I sat there for the longest time just holding her and rocking her. That was comforting me not her as she was sleeping peacefully, for the first time in a week.
For the rest of the journey......
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I wasn't going to add links because I wanted to keep this page free of them, but I have since changed my mind. I think this is a good one for those of you that got here through other means.
Hydrocephalus Guest Book
in this book you will find people with varied stories on hydrocephalus. It is very informative and has helped me in a lot of ways.
© Trudy November 9, 1997
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