
It was one year ago today. One year ago that my baby girl left this world and went home to heaven. It was aweful. I have never felt so sad and depressed. My whole body ached with grief. We had only been home from the hospital 12 days this time. I had no idea what was coming. Kynslee was doing so good at home, too. She was smiling, moving her arms and legs, and even started talking a little bit. It was so great to have her home.
Then her fevers started on Sunday (she passed away on a Tuesday). We took her to her first sacrament meeting that day. I was so nervous/excited. We kept her in her stroller so no one could get close. Also, it was nice to have a place to keep her feeding pump and oxygen tank. She did really well and slept most of the time. After church, I noticed that she felt warm and she was starting to fuss a little bit like she wasn't comfortable. So we gave her some Tylenol and didn't think much of it. We took her to Grandma Nadene's house that night for Sunday dinner. I knew she still wasn't feeling well. And that night, she had a rough night. She didn't sleep much and she kept pulling her feeding tube and oxygen off her face. We eventually pinned her sleeve to the bed so she couldn't grab at everything. Monday I just kept giving her Tylenol but it wasn't bringing down the fevers. I decided to call our pediatrician to see what to do. It was her day off, but she told me to meet me at the office as soon as we could. I told her since it was her day off, we could wait and I would take her in first thing in the morning, but she told me we better go in today. She also asked if Ben would be coming. I thought that was weird, but told her that he was at work and my mom would be coming with me. (It took a couple of us to load her and all her stuff. Plus I loved the company and it was nice to have someone watching her in the back seat while I drove.) Anyway, I should have figured it out then I guess, but I didn't. I just thought she would give us some medicine that would help her. Kynslee had been having fevers in the hospital for weeks and they couldn't find any cause of them. So when we went home from the hospital I just expected that fevers would be normal. She actually didn't have any for the first 8 days home. I was so excited about that, and felt that she was doing really well at home. I really think it was a blessing to not know just how sick she was. I mean I knew her heart problems were serious, but I really thought time was on our side. So on our way to the doctor's office, we stopped at Grandma Tye's house and had a little visit. Kynslee was not doing real well by then. She was really fussy and I could tell she was really warm. By the time we got to the doctor's office, Kynslee was the worst I have ever seen her. She burning up and she was moving around like crazy, flinging her arms and legs and it just wasn't like her to do that. When they took her temperature it was 107 degrees. The doctor told me that we'll first get something to calm Kynslee down and help her feel better, and then we will talk about options. At that time, I was nervous. I knew something wasn't right. She told us that with a fever this high there must be an infection in her blood stream. She said we could life flight her back to Primary's or we could take some cultures to see just what the infection was, but she figured that by this time, it was probably spread all over her body, and it was probably multiple things. The final option was to take her home. The doctor said she probably would not make it through the night. My first instinct was to take her back to Primary's where they could save her. But I knew that wasn't the option for us. We knew that they had done what they could do. Her little heart just couldn't handle anything more. If we went to Primary's, they would put the breathing tube in and have her on so many medications, and there was no way of knowing if would help. She would probably pass away up there with all those tubes and wires, and in the place we worked so hard to get away from. (I am very grateful for that hospital and their staff. They did amazing things and no doubt saved her life on many occasions. They truly made it possible for her to be with us for so long.) All the time the doctor was talking, I just held Kynslee and really felt numb. I didn't know what to think or do. My worst nightmare had arrived, and yet I knew it would come eventually. I called Ben to tell him and I broke down as I had to tell my husband that our daughter was dying and there was nothing we could do about it. I gave him the options and asked what he wanted to do. Of course we both talked about going to Primary's. We discussed if that is what Kynslee would really want, or if that was what we really wanted, even. I think I felt like that is what we were supposed to do and we wanted to know that we did what we could to save her by taking her back to the hospital. It just didn't seem right to have to take her home and not do anything. But in my heart I knew that was the best choice for our little family. Kynslee would not want to be back in the hospital hooked up to everything. I knew it was time to say good bye. And so did Ben. So the doctor gave us some medicine to help ease the pain for Kynslee (too bad she didn't have anything to ease the pain for us) and called hospice for us and sent us home with our dying baby. It was a long ride home. My mom made all the calls to family to tell them what was going on. It still just didn't seem real that it was happening, even as I heard her say it to everyone. I was so grateful my mom was there, and I didn't have to go through that alone.
By the time we got home, a lot of our family had already gathered there. Kynslee was doing much better, and sleeping good, which was such a relief after what I saw her going through earlier. And then with all of our family surrounding us, we waited and had the longest night of our lives. I didn't really know what to expect, since I had never seen anyone die before. I didn't know if it would be sudden or if I would even know what was happening. I was really nervous. But after a few hours, I could tell she wasn't ready to leave us quite yet. Everyone stayed with us well into the night and we enjoyed each others company as we held and loved our little Kynslee. We were able to make hand molds and do some hand and foot prints. I am so grateful to have those. I am glad someone thought to do that. While everyone was with us Ben gave Kynslee a blessing. The last blessing he would give her in this life. It was sad and we all cried. As the night wore on, everyone left and Ben and I made our bed out in the family room right next to our baby girl. She was so hot that we had taken her clothes off and laid her on a blanket so she could cool off a little bit. Slowly, her breathing got slower and she stopped moving around. Family came back to spend the last hours with Kynslee. At this time we took out her feeding tube and took the oxygen off her face so she could be comfortable. She took deep breaths, with more and more time passing between each one. Ben and I held her for hours as this continued until at 1:50 pm on Tuesday, April 15, 2008, our baby took her last breath.
I think its safe to say that was the worst day of my life. I was completely lost in grief and pain and I didn't know what to do. Word spread quickly and we got a lot of visitors, mostly from family and the ward, bringing food and love and comfort to us. I tried to talk with people, but I had no idea what was being said. It was all a blur. Later that night I realized I was hungry because I hadn't eaten anything all day. I tried to drown my sorrows in food, mostly chocolate and other comfort foods. Only they didn't help me feel better. We put a movie on to pass the time and so we weren't just sitting there. I haven't been able to watch it since. Its too painful and brings back too many emotions and feelings. I cried myself to sleep the night, and MANY nights after that, knowing nothing would ever be the same.
I miss her so much. I can't wait to see her again. It already seems like its been FOREVER since I have seen her. Even though the pain is not as fresh, its still there. It is like an ailment you can't get rid of but just learn to live with. I have just learned how to get along. It will never be gone. Not until I am with her again. There are obviously so many WHY's and WHY NOT's to ask and ponder. It doesn't seem fair that we have to go through this. But we have and we continue to go through it. But we will survive. We will make it. And we don't have to do it alone. Our God and Father is with us as is our Savior, Jesus Christ. We have felt Them as They have helped us get up each day and gave us strength to walk outside. And They continue to guide us and strengthen us. Because we need it each and every day. This is not something that I will ever get over. This is something I will live with. And I know I will see her again and that our family will be together forever. But until then, it hurts and its hard. Not a day has passed in this year that my heart doesn't ache to hold my baby. And I know not a day that I will ever live will pass without that ache.
I feel her close to me. I feel her love comforting me. I know she is with me and encouraging me to be my best so I can be where she is.

We know she is perfect, no longer suffering and we are grateful for that knowledge. She had to go through so much while she was here and it was hard to have to see her go through everything. She taught us so much and brought so many people closer together. We are grateful she stayed with us so long. She changed us in so many ways, and we will forever be grateful for her and how she blessed our lives.