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Thursday, July 7, 2011

Teale in the NICU

The next day was filled with learning things I wish I never had to learn. Teale would be seen by many professionals who would all evaluate her and analyze her birth. Mark and I would be asked many questions and often I felt like the blame was being placed on me. I experienced so many emotions as I got to know my new daughter but the one that stood out above the rest was uncertainty. We were repeatedly told, the brain in an infant can compensate for losses much better than in an adult. The MRI's were gruesome, brain damage had occurred as a result of a stroke. Her main cerebral artery at the top of her brain had burst. There was no blood flow to most of her left lobe and large chunks of her right lobe also. The doctors could not predict what this meant for her future, but it obviously didn't sound promising. One day I went to visit Teale in the NICU and she was attached to many new wires on her head. It was scary to see her like this, so small and fragile, one more test being done. An  Electroencephalogram (EEG) test, to measure brain electrical activity was being administered. There was fear she was experiencing seizures. Being uneducated in much of this, all I knew was worry as a Mother. After this test was done, we would get the results, but I could watch the monitor and guess at what it meant. I would do that with all the monitors, watch the lights, the screens and listen as alarms went off to alert my NICU nurse team. To them this was just a job, the machines helped them do it more efficiently, to me it was a mystery I was trying to solve. What did this or that mean? Why did the one beep make them move quickly, while others seemed like there was no urgency? When the EEG was removed from Teale's head we were told there would be a meeting to discuss results. We had no idea that this would be the first of many meetings to discuss Teale that awaited us in the future. This meeting in particular would be the most life changing ever. They took us into a conference room where several professionals sat around a big round table. Introductions were made, there were neurologists, social workers, NICU administrators and doctors. I don't remember exact words, but we were told something to the effect of "Teale's EEG results show seizures, but more disturbing the EEG shows no differences between awake and asleep, experiences are not registering, in essence she has flat brain waves." I grasped Mark's hand harder and tried to compose myself. What did this mean? Were they saying her brain was dead? As we tried to process this, the social worker, who was all of 22 years old looked me in the eyes and asked "What are you feeling right now?" I wanted to scream "What the HELL do you think I'm feeling?" I wanted to reach across the table and strangle her!  I waited for Mark to protect me, but Mark is much more thoughtful than I am and his response was not fast enough. I told her I wanted to be alone with my husband, that I wanted out of this room and all the people staring at me, waiting to see me break." Mark then spoke up and said the same thing with much more kindness and he asked to be alone with me. Before they gave us that request, getting up to leave the room, a doctor said to us "Any experiences you can give her, any stimulation she receives, will make a difference. Giving her as much as you can, can make her be much more than we see." They quietly left us alone. We cried and tried to figure out what this exactly meant. We would talk to our NICU nurses who we trusted. I'm not sure when we made this next decision, but I believe it was in this room while alone that we made one of the most thoughtful decisions ever. Mark and I decided to tell no one what we had just heard. We would not share the extent of her brain damage, yes, we would admit to some, but the extent would be kept between us. Our thoughts were the more people knew, the less they would expect from Teale. We wanted anyone working with her to think she had all the potential in the world. We were not going to settle for her not walking or talking, we were going to get her back, no mater what it took.

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