Mommy's Journal

Saturday, 28 February 2004
Today was the first time in months what we had Christina out on the town. It was one big family affair. There was Mom, Dad, big brother Brian, Grandma Slack, Godmother Kathy and of course the princess herself, Christina. Through her "Early Intervention Team" we were given a kid kart to borrow and use. She enjoyed seeing people and sitting up high in her new "wheels". The main purpose of the trip was to shop for a birthday/Easter dress for her to have birthday/Easter pictures taken in. We went from store to store looking for the right dress. It wasn't until we got to Jcpennys that we found one. We didn't get to the dress until after she spotted an orange tie for Daddy. Christina's favorite color was orange. We picked up the tie and continued onto the toddler clothes. We looked at several dresses but nothing looked right until we picked up a pink dress with a purple rose at the waist. Christina got very vocal but we were unsure if it was about the orange tie or the dress. We took the tie out of the picture and she was still very vocal so she decided that was her dress. We bought the dress, tights, and the tie. We decided to have lunch since she was indicating she was hungry. We went to the food court and while Daddy was getting lunch, we had our first "Public G Tube Feeding" with a minor audience from the little girl about 7 or 8. Christina could not get comfortable enough to sleep in the kid kart so we got the standard stroller out so she could relax and sleep. In order to ensure there were no stomach issues on the way home we walked around the mall some more. We stopped in Children's Place. We ended up shopping for butterfly pattern outfits for the conference in June. After about an hour or so we headed home and the trip was a success. There were no episodes all day her numbers were good.

Wednesday, 03 March 2004 about 0300am
I ended up staying in Christina's room this night. She was having issues with drops in oxygen levels for a brief second and would come back up to normal before I would get to her room. At around 0300 am she woke as if she was struggling to breathe, however, her oxygen numbers were fine but her heart rate had escalated. She had a terrified look on her face. I picked her up and began to rock her trying my best to soothe my baby girl. After about 30 minutes of not getting her heart rate down, I woke my husband up. He called Kathy because she had a way with Christina. Kathy came over she took over trying to calm her down. I was exhausted that I ended up falling asleep on the sofa at around 0500 in the morning. Kathy got her calm enough to get her to sleep but her heart rate remained high. We called her pediatrician to inquire about the high heart rate and we were told that as long as it didn't stay in the 200s for long periods of time then we were okay. We decided not to give ribnol again since that was the only thing that was different the day before in hopes it would help. From this day on, Christina's heart rate was never the same.

Thursday, 4 March 2004
We started using the Bipap on Christina. Prior to hooking her up, her heart rate was in the 150s-170s awake and 130s-140s asleep. Her oxygen levels stayed about 95-96. The Bipap use showed her heart rate in the normal range but when you took her heart rate manually it was higher than the pulse ox indicated. We had the pulse ox checked and there wasn't anything wrong it. Her oxygen levels stayed around 97-98 on Bipap. She got a restful sleep. She fought only when the mask was being placed on her.

Saturday, 13 March 2004
Today started out pretty normal except for the fact it was a scheduled Mommy/Daughter day. I had plans of taking my daughter out to spend time with her. When I took her off Bipap her oxygen levels were 100% and heart rate was in the 120s. She was awake waiting for me to detach her from all the machines and cords. We went through the morning routine before getting set to go out. When she came off the Bipap she dropped to 96 oxygen level and maintained it. We ended up turning it into a Mommy/Daughter/Grandmother day. We went to Dollar General, where we used the stroller. Christina ended up with an orange fish that looked like Nemo. When we were done there we went to Family Dollar where instead of using the stroller, I walked her around the store on my shoulder. Grandma and I ended up at Dairy Queen for lunch and Christina had her first taste experience with chocolate and ice cream. She had a ball. When we got back home her numbers dropped to 93 and stayed there the rest of the day. She learned to purposely set of her alarms too. She had Grandma and I running ragged all day once we go back home.

Sunday, 14 March 2004
Today was a pretty normal day.

Monday, 15 March 2004
We were up at our normal time to go through the morning routine. Speech Therapist came on schedule for the day session. Christina and Beth work with the eye gaze board with different farm animals. She had a wonderful session. She knew which animal was which and even tried saying "Baa" for sheep. During her session she wanted to pat each one of our pets. I picked each one up and she patted each one. Next was feeding time while waiting on our Physical Therapist (PT) to arrive. Christina and I danced around the room to Mulan and then I put in Sleeping Beauty for her to watch. Kathy, her godmother, arrived before Kathy, the PT did. I had Christina on the floor using her sling with her legs prior to Kathy (PT) getting there. Christina had a very good physical therapy session. She wiggled her butt for us, her numbers stayed at 96 throughout the day. We had her in the stander for about 20 minutes which she did not like at all. We were finishing up her session when her brother, Brian got home from school. He played with her for a short period. We then started to get ready for the road trip to JcPennys for their pictures. The trip down was uneventful. She had trouble staying awake for the session. We had a few shots of Brian. We took a few of the two of them then we had a few of her taken. We were in the process of trying for another shot of her and Brian when she had another episode that we truly believe was a seizure. We got everything together after she come back to alert status only tired. We made the trip home very cautiously. We were almost to the house when her heart rate started to race once again like the night of 03 March 2004. We got to the house, unloaded her, got her in the house, hooked back up and her heart rate was still high. Her oxygen levels were in the low 90s. Kathy got ready to do CPTs and her heart rate climbed almost immediately to the 220s. I watched my angel's face minute or two before she had a blank stare and her pupils were so dilated her eyes appeared to be black. She was or appeared to be looking at me when her heart stopped. Kathy and I started CPR and Daddy called 911. We didn't stop our efforts even though we, the three of us, knew she was gone. Read Kathy's last journal entry for more details of the EMT to the hospital and the rest of the evening.

16 Mar 2004
The night before we all eventually went to bed. We gathered up things we felt she would want with her. We had her pink dress she loved so much, her princess's blanket, her small horse she held onto all the time, her purple bear she had since before she was born, orange poms poms, bracelets, her dedication bracelet, and a few other items. We had to go to the funeral home to make the arrangements. We felt that she wouldn't want it drawn out for too long. We chose to have the viewing, service, and burial all the same day. We had so many people in and out of our home in the next few days we didn't have time to think.

17 Mar 2004
We went shopping for outfits to wear the next day. I didn't want to wear black to her funeral because that wasn't who she was. She loved colors. I, Grandma Slack, and Kathy, Godmother we all chose to go in spring colors because that's what she was a ray a sunshine everyday not dark and gloomy. The outfit I decide to wear tan dress pants and a white shirt with butterflies and flowers. Grandma Slack's was I think pink pants and a white shirt with orange flowers. Kathy, Godmother, had I think tan pants and a pink shirt with the same butterfly pattern as mine. Brian is to wear the same purple shirt he did for their pictures. Daddy will wear his black pants, navy blue shirt and the orange tie she loved so much.

18 Mar 2004
The day of her funeral, we needed to be there by 0930 for family. 1000 started the viewing by friends. We got there and each one of us went to see her. She was a beautiful angel laying there with a content smile on her face. I have no idea how they did it or if they had anything to do with it. The last time I saw my baby she didn't have a smile on her face. I believe this was her way of telling us that she was happy and free. Christina had over 150+ to pay their respects to her that day. I never knew how many hearts she touched. I saw people I never saw or heard of before. There were so many flower arrangements with angels in them that it took me the whole service to see them all. Earlier that morning there was some snow showers but for her grave side service it stayed clear until we left for home. I believe her funeral went the way she would have wanted it too. I feel we had an angel moment later that evening. Kathy, Godmother, Grandma Slack, Kathy, another friend of the family, and I were present for this. Daddy had blown some bubbles from her bubble supply. There was one lingering behind the TV. Kathy, Godmother, said that's Christina playing with the bubble shortly she will put it on top of the picture there on the TV. Seconds later the bubble was bouncing on top of the frame. Kathy, Godmother, told me to stand in front of the TV because she wanted to give me the bubble. It wasn't more than 5 seconds later the bubble all but jumps out at me and landed on my finger. I felt the sensation of a tiny finger gentle pressing on the bubble as it depleted to nothing. I believe this was the point in which I knew she was happy and we were going to be alright. We knew something significant happened on the day she died in 2003. It took us all evening going through her room to try and find out what was so important about that day. I almost gave up until I found in one of her memory boxes one of the party favor tags from the baby shower. On 15 March 2003, we celebrated our child coming in to this world. It was the day of my baby shower. This proves to me she chose her day to die. She made sure she smiled for me that day. She ensured she had her birthday pictures with her brother and she chose a day that already had happy memories.

19 March - 01 April 2004
These past weeks have been somewhat hard. I have had time to reflect back to her last month and a half of her life. Christina started to decline shortly after her surgery. I didn't notice it. I don't think I wanted to see it. She was after all my baby. Looking at her pictures before her stays in the hospital and after her surgery they show when the disease started to take its toll on my little girl. Christina did everything in her power to make sure we were happy like we were doing for her. As I think back to what she did the day she died, I believe she chose to die that day. She vocally asked for each of our beloved pets, Courtney, our jack Russell; Shadow, her Maltese terrier; and Duchess, our big furry cat. She wanted to pat each on of them which she hadn't done before. She would pet them but only if they came over to her. She made sure she had her pictures taken in her dress with her brother for her birthday. I feel she wanted to die at home with those closest it to her or she could have easily died there in JcPennys. I have my moments, although I haven't fully lost it. I feel we those closet to her except her brother, had already grieved for her at some degree since we found out she was terminally ill. We don't have the shock factor that most people have when a loved one dies for no apparently reason. We knew sometime it would happen but of course we never dreamed it would happen this early.

02 April 2004
We celebrated her birthday with family and friends by releasing 30+ balloons in her memory. We did this at her Great-Grandma Slack's house. We had a cake and ice cream at our house because it was what her brother wanted. Our angel had all her firsts in occasions except St. Paddy's day and her first birthday. The rest of our years will be rough but not unbearable because as long as we remember her, she continues to live. She gave us more in 11 months than most get in a life time. I would never trade those 11 months for anything.