MY BEAUTIFUL GIRL & HER CRAZY HAIR

 

The Beginning

Our Daughter, Trystyn, was born on May 31, 2007 . It was a planned C-Section and everything went well. We stayed in the hospital 5 days, like usual and went home. She was a healthy baby girl. Then on June 29, 2007 at 5:00 in the morning she woke up with a really high fever. I put her in a cool bath and the temperature dropped instantly. All day she was not feeling good, but as we all know at 4 1/2 weeks old there isn't a medicine that you are able to give an infant to keep her fever down. Her fever was up and down all day, but never that high again. Since this was my second child I knew all the signs to watch for. She was eating and going to the bathroom normally so I figured it was a virus that she would just have to work out on her own. At 9:00 pm that night her fever was back up to 102.7. I then called my doctor's exchange and the nurse called me back. Trystyn was making this noise like she was just really unhappy. The nurse asked to listen to her. When I got back on the phone she told me to get ready to take her to the hospital. Luckily, our son Rain was spending the night at a friend's house that night. So Mark & I took Trystyn to the hospital, back to St. John's where she was born. We got there and they checked us in. The doctor on duty felt that it was probably a bladder infection, but because of how little she was it was routine for the hospital to check infants in and keep them until all of the bacterial testing came back. We were moved to a private room. I was figuring that the tests would come back and then by Monday we would be on our way. How very wrong I was. The tests did start coming back, but they all were negative. Then on Sunday, after Trystyn not really sleeping at all Saturday night, she started having what I kept telling the nurses were these ticks. Her hands and eyelids were moving to the same beat. The nurse on staff at that time kept telling us that it was due to her not having slept. I knew in my heart that was not the case. Our son fought sleep like nobody's business as an infant and he never once made these motions, that I felt were like someone having a tick. The nurse on duty at that time was actually never in the room when she had one. At one point she even stopped breathing, but I got her breathing again, it was literally like seconds. By the time I pushed the call button, she was breathing again. The nurses shift ended at 8:00 pm that night and the new nurse came into the room. I was once again explaining to her the ticks Trystyn kept having and which were getting more frequent. The new nurse stuck around to see what I was talking about. Trystyn starting having one and the nurse took her hand. This one last like 20 seconds. The nurse then looked at me and stated that this was not from not sleeping, Trystyn was having seizures. Right then the next seizure started and Trystyn stopped breathing. Trystyn was laying in my lap and we were sitting on the hospital bed. The nurse immediately started bagging her and was on her phone. Within like seconds there were six more people in the room and they were talking about moving her to the PICU (pediatric intensive care unit). This seizure lasted 1 min. and 20 seconds. Trystyn was moved to the PICU. She had stopped breathing on her own and was unable to keep her blood pressure up on her own. They had to intubate her and give her these bulbous influxes of fluids to keep her blood pressure up for her. When we finally got to see her again, I have to say as a parent you never want to see your child like that. She was intubated and had a million IV lines coming out of her. Needless to say Trystyn spent 2 1/2 weeks in the PICU. To this day after a million tests all the doctors can tell us is that she had an unknown virus that passed the blood barrier into her brain. The day I was finally able to take my daughter back home was one of the best days of my life. In my mind I just kept thinking okay the virus is gone and she will be fine now. At about 6 months of age I knew Trystyn was not developing the way she should be. She never grabbed for anything. Since we were still seeing her Neurologist, because of the seizures, we made an appointment with him. He told us that he felt that the part of the brain that controls her eyes was probably damaged, but he wanted us to see pediatric optomologist just to make sure. That doctor agreed with her neurologist. They call this Cortical Visual Impairment. This means that her eyes function and work normally if only her brain would tell them what to do. At that point I was feeling like, okay this is fine there are a million people that are blind and lead perfectly normal lives. We will make it through and she will be great. Then her neurologist decided it was time to have a repeat MRI, since she had not had one since she left the hospital. My husband, mother and I went to the neuro's office to get the results. This is where we learned that Trystyn had severe brain damage. Her brain had actually pulled away from the skull and the ventricles that were supposed to be a small size were huge to compensate for her brain. We were devastated to say the least. We knew there was probably an issue because her check up at her pediatrician showed that her head was not growing normally. For me I had to tell myself okay Carrie, suck it up, this is it and we will still make her life the best that it can be. Our Neurologist was saying with the severity of damage she may never walk or talk. But, whatever, she was alive and that is all that I cared about. So really this is where our journey begins. This is about how you go about living a pretty much normal life when you have a child with such major issues. I have a full time job. I have a 4 year old son. I have husband that works that night shift which means I am alone with the kids 90% of the time. We have a dog, had 2 when this happened but the big one passed away. We have a house, bills and everything else that goes along with raising a family. The only difference between us and everybody else is that we also have a daughter that may never walk or talk or feed herself. She may never learn to go to the bathroom room on her own. But, I will do my best to see that she gets whatever she needs so that even if there is the slightest chance of it happening I will be there to help her develop those skills.

Our Daughter, Trystyn, was born on May 31, 2007 . It was a planned C-Section and everything went well. We stayed in the hospital 5 days, like usual and went home. She was a healthy baby girl. Then on June 29, 2007 at 5:00 in the morning she woke up with a really high fever. I put her in a cool bath and the temperature dropped instantly. All day she was not feeling good, but as we all know at 4 1/2 weeks old there isn't a medicine that you are able to give an infant to keep her fever down. Her fever was up and down all day, but never that high again. Since this was my second child I knew all the signs to watch for. She was eating and going to the bathroom normally so I figured it was a virus that she would just have to work out on her own. At 9:00 pm that night her fever was back up to 102.7. I then called my doctor's exchange and the nurse called me back. Trystyn was making this noise like she was just really unhappy. The nurse asked to listen to her. When I got back on the phone she told me to get ready to take her to the hospital. Luckily, our son Rain was spending the night at a friend's house that night. So Mark & I took Trystyn to the hospital, back to St. John's where she was born. We got there and they checked us in. The doctor on duty felt that it was probably a bladder infection, but because of how little she was it was routine for the hospital to check infants in and keep them until all of the bacterial testing came back. We were moved to a private room. I was figuring that the tests would come back and then by Monday we would be on our way. How very wrong I was. The tests did start coming back, but they all were negative. Then on Sunday, after Trystyn not really sleeping at all Saturday night, she started having what I kept telling the nurses were these ticks. Her hands and eyelids were moving to the same beat. The nurse on staff at that time kept telling us that it was due to her not having slept. I knew in my heart that was not the case. Our son fought sleep like nobody's business as an infant and he never once made these motions, that I felt were like someone having a tick. The nurse on duty at that time was actually never in the room when she had one. At one point she even stopped breathing, but I got her breathing again, it was literally like seconds. By the time I pushed the call button, she was breathing again. The nurses shift ended at 8:00 pm that night and the new nurse came into the room. I was once again explaining to her the ticks Trystyn kept having and which were getting more frequent. The new nurse stuck around to see what I was talking about. Trystyn starting having one and the nurse took her hand. This one last like 20 seconds. The nurse then looked at me and stated that this was not from not sleeping, Trystyn was having seizures. Right then the next seizure started and Trystyn stopped breathing. Trystyn was laying in my lap and we were sitting on the hospital bed. The nurse immediately started bagging her and was on her phone. Within like seconds there were six more people in the room and they were talking about moving her to the PICU (pediatric intensive care unit). This seizure lasted 1 min. and 20 seconds. Trystyn was moved to the PICU. She had stopped breathing on her own and was unable to keep her blood pressure up on her own. They had to intubate her and give her these bulbous influxes of fluids to keep her blood pressure up for her. When we finally got to see her again, I have to say as a parent you never want to see your child like that. She was intubated and had a million IV lines coming out of her. Needless to say Trystyn spent 2 1/2 weeks in the PICU. To this day after a million tests all the doctors can tell us is that she had an unknown virus that passed the blood barrier into her brain. The day I was finally able to take my daughter back home was one of the best days of my life. In my mind I just kept thinking okay the virus is gone and she will be fine now. At about 6 months of age I knew Trystyn was not developing the way she should be. She never grabbed for anything. Since we were still seeing her Neurologist, because of the seizures, we made an appointment with him. He told us that he felt that the part of the brain that controls her eyes was probably damaged, but he wanted us to see pediatric optomologist just to make sure. That doctor agreed with her neurologist. They call this Cortical Visual Impairment. This means that her eyes function and work normally if only her brain would tell them what to do. At that point I was feeling like, okay this is fine there are a million people that are blind and lead perfectly normal lives. We will make it through and she will be great. Then her neurologist decided it was time to have a repeat MRI, since she had not had one since she left the hospital. My husband, mother and I went to the neuro's office to get the results. This is where we learned that Trystyn had severe brain damage. Her brain had actually pulled away from the skull and the ventricles that were supposed to be a small size were huge to compensate for her brain. We were devastated to say the least. We knew there was probably an issue because her check up at her pediatrician showed that her head was not growing normally. For me I had to tell myself okay Carrie, suck it up, this is it and we will still make her life the best that it can be. Our Neurologist was saying with the severity of damage she may never walk or talk. But, whatever, she was alive and that is all that I cared about. So really this is where our journey begins. This is about how you go about living a pretty much normal life when you have a child with such major issues. I have a full time job. I have a 4 year old son. I have husband that works that night shift which means I am alone with the kids 90% of the time. We have a dog, had 2 when this happened but the big one passed away. We have a house, bills and everything else that goes along with raising a family. The only difference between us and everybody else is that we also have a daughter that may never walk or talk or feed herself. She may never learn to go to the bathroom room on her own. But, I will do my best to see that she gets whatever she needs so that even if there is the slightest chance of it happening I will be there to help her develop those skills.