Kapri was born with a rare chromosome disorder called Tetrasomy X. Which affects only females and a heart defect called Hypoplastic Right heart Syndrome. We were told it would be a miracle if Kapri made it to birth. So when she did, we had our first miracle. From there if she survived birth, she would have a 3 stage heart surgery called the Fontan Procedure. After the first surgery at 3 days old, the doctors said it would be a miracle if she made it 6 months, and if she did she would continue with the Fontan surgeries, but with an added surgery that would place a BT-Glen Shunt. Like before, the doctors said it would be lucky if Kapri made it to her 1^st birthday. Once again Kapri proved the doctors wrong. Kapri turned a year and a few weeks later she had the 2^nd stage of the surgery. One more surgery and we were in the clearing! At 18 months old Kapri had the 3^rd stage of the Fontan surgery. That is when everything went down hill. Days after the surgery Kapri started developing fluid on her lungs. From then on Kapri was in and out of the hospital pulling fluid off her lungs trying different methods to stop the fluid and to keep her going. In the mean time developed other illness’s that are a ripple effect of heart and lung failure. One which took a major toll on her was PLE (protein losing enteropathy) which eats the proteins and nutrients in the body causing multiple problems with the liver, kidneys, and so on.

Over the next year and a half we tried to maintain some kind of normalcy. Which, we had never really had. We were a military family so we moved a lot and we lived at the children’s hospitals most weeks out of the month. But Kapri continued to be a happy little girl. With Kapri having all the medical problems Kapri was delayed physically. But she was also mentally handicapped as well, due to the chromosome disorder (Tetrasomy X). Kapri learned to walk at 1 ½ years old, but was set back after her surgery on her heart and then again when she had foot surgery to repair her club foot. Kapri officially learned to walk when she was 2 ½. Speech was another thing that affected Tetrasomy X girls. Some delayed; some just had trouble getting what they wanted to say out. So from the beginning we worked on sign language as another way to communicate. Which help since a lot of the time Kapri was to weak to talk or put all the words she wanted to say together. My biggest fear was that I would never hear her say “I Love You”. A few weeks before Christmas, Kapri learned the sign for ‘I Love You’. Kapri could talk but really never get 3-4 word sentences out. But she managed to say “mom” and poke me, then sign ‘I Love You’. It was like she knew her time was limited.

That Christmas before she died, we found out I was expecting our second child. I knew then that we were losing Kapri. My biggest fears were confirmed; she had if less than a year if we were lucky. Our only hope was a heart transplant. Everyday was more important, we could not get enough time her. Kapri was so excited about being a big sister. She would pull me over to her hospital crib and have me stand on a chair, and kiss my belly. Saying “aw...baby” and kiss me again. Since we knew that more than likely I would be giving birth while Kapri was in the hospital, we chose to give birth next door at Freodtert Hospital. Which we could get to through the tunnels, and I could go to my clinic visits and be in two places at once. We actually got to take Kapri to some of the visits, so she could be apart of the whole baby experience. Kapri was there for our first ultra sound, at first she was upset when we went into the room and she found out we weren’t there for her. She was ready for the doctor to look at her heart, she took her shirt off. Kapri thought the doctors were going to do an echocardiogram on her, which was routine for us when she went to the doctor. Then to see me lift my shirt and the doctor put the scope on my belly she was even more worried. As soon as she saw the monitor, she knew instantly what she was looking at her baby. Kapri pointed at the screen and screamed “Mom! My baby!” The doctors were so impressed with how observant Kapri was about the baby they gave her the ultra sound picture; she put it in her IV back pack. Which is where it stayed forgotten by me, until her dad came home that night. Kapri pulled the picture out and gave it to her dad, and pointed out the baby to him and told him it was her baby.

On February 2, 2003 Kapri was finally put on the heart transplant list. Only two days later Kapri came down with RSV. This is a virus that attacks the lungs. Again she was hospitalized and was put on standby for the transplant. Since she was so sick, if a heart did come in, she would not be healthy enough to take the transplant. Through the weeks Kapri showed improvement, and was actually regaining energy she hadn’t had in months. But, something wasn’t right. She had this new found energy, but her oxygen levels were low, and she was on a higher dose of oxygen than normal. They were actually talking about sending her home. We chose to refuse discharged for a few more days, until her oxygen level went up and she was less dependant on oxygen. If we had known that was going to be her last few days on earth I would have taken her and ran with the chance to go home.

As a mother you don’t expect to have to fantasize about how your child will die or die for that matter. When you have terminally ill child you do though. We wanted Kapri at home and in bed between me and her dad, and her taking her last breath in our arms. Instead we got life support. February 26^th, Kapri crashed. For 3 days Kapri was full of energy, had slept 3 hours in a period if any at all. I had not seen her that happy in weeks. Since Kapri was so energetic, I of coarse did not sleep as well. I had also not ate much either; due to lack of money and I was afraid to go home with her oxygen levels being so low. Since I had not ate or slept much the past few days I asked my husband to take me home for a few hours so I could shower and eat. Since we thought Kapri was at little more stable than she had been. As we were walking out the door Kapri was sitting at the end of the hospital crib with her feet hanging out of the bars and her face pressed against the like a little prisoner, reaching her arms out saying “ No mom! Sit! Don’t go!”. I told her we would be back that we were just going outside, mommy would be back. Greg, my husband hesitated a minute. I told him not to worry about her, we weren’t going to be gone long. We only live 10 minutes away from children’s’. We had just reached our door, when the transplant pager started beeping. I called the nurses station. The nurse got on the phone, “Cyndi? We aren’t sure what happened. Kapri coded, we are doing CPR.”. I dropped the phone, and screamed for Greg to get back to the hospital. It took us 3 minutes to get back. When we got back to the room the doctors were trying to guide tubes down Kapri’s throat to put her on life support. Through the night we kept Kapri sedated so she would not feel the tubes or wake up. Every time she would wake up her heart would stop. I am still not sure if it was from her being scared or just the added effect it took to be awake. We had her on 4 different blood pressure medications to keep her heart going.

By 2:34 a.m. We knew what we had to do. Kapri opened her beautiful blue eyes. The doctors called over to us. “Cyndi? Greg? She’s awake; do you want to talk to her before I get her back to sleep?” Of coarse we did. Greg on one side of her bed, me on the other side, both of us, holding her tiny hands. I slowly began talking to her. “Kapri?” Kapri’s blue eyes piercing me. “Do you know mommy and daddy love you very much? Oh…..We love you so much, we are so proud of you. You have made us so happy. It is okay to go to Jesus. Mommy and Daddy will be okay. We love you so much! Do you know how much we love you?” With that Kapri let go of Greg’s hand and signed ‘I love you’. Then her heart stopped and that was the last time we saw her eyes open.

By that morning when the doctors came in, we made our decision. We would take her off life support. We would try to hold off one more day until the family could get there. We lived in Milwaukee, WI and didn’t have any family in the state. By that evening, we couldn’t wait any longer. Kapri was getting worse by the hour, and the doctors didn’t think she would make it another day. So with both sets of grandparents, our neighbors, and the nurses who we came to call our family, we began to get ready. We all touched and kissing her as much as we possible. At 10 p.m. the nurse pulled a couch into the ICU room, where Greg and I sat with Kapri in our arms. We held onto her as tight as we could, and the doctor turned off the machines. We held her for many more hours. I was able to give her last bath and be a mommy to her for the last time. I know deep in my heart we did the right thing, by taking her off life support. At 2:34 a.m. when she told us she loved us, we knew. She knew.

Not a day goes by that my heart doesn’t ache for Kapri and wishing she could be here with us and see her baby sister Adyson. I see so much of Kapri in Adyson. I see Kapri’s determination, the devilish smile, and those deep blue eyes. It is bittersweet.