We have been blessed with two angels. Our daughters, Tristen and Makayla were born with a very rare genetic disorder called non-ketotic hyperglycinemia. Tristen came to us on December 30, 1995. Danny and I were very young parents. We were so thrilled to have our new baby girl. We took her home from the hospital looking for a bright future. It didn't take long before our happiness turned to fear. She never cried, stopped eating, and would not wake up. We took her back to the hospital. She was then transferred to Children's hospital. As they were admitting her to her room, she stopped breathing. She was immediately taken to the ER where she remained for three hours. When we finally got to see her, she was on a ventilator. Tests were done to see what had caused her to stop breathing. She was then transferred to ICU where she remained on the ventilator for nearly a month. When her diagnosis was confirmed, we were told that she probably would not live past the age of two months. 70% of these children do not make it past that point. We were also told that if she did live, she would be severely physically and developmentally delayed. It was very hard to hear this but all we could think about was getting her off the ventilator ands home. She pulled through. At five weeks old, we took our baby home. Today, she is seven and a half years old. She does not walk, talk, go to school, eat by mouth, and still wears diapers. She is however very happy. She is a total joy to us.
When I found out I was pregnant for the second time, I was a little scared but had a sense of peace that everything would be okay. My husband, on the other hand, was terrified. We knew we had a 25% chance of having another child with NKH. When Makayla was born, she was very alert. She ate well and everything was so different then when Tristen was born. We took her home. On the forth day she stopped eating. We took her back to Children's hospital thinking it was jaundice. When the doctor walked into the examining room, he switched on a bright over head light and Makayla was blue! He took her to the trauma room and administered oxygen and began drawing labs. As they stuck the needle in her arm, I cradled her head to comfort her as I knew she would cry, she didn't. We then knew what Danny had feared all along. It was NKH. At first we were devastated. I felt in some way that I had been lied to by God. I just knew she was going to be okay then this? Even if she did make it, how were we going to do it with two sick kids? It didn't take long for us to collect our thoughts and concentrate and pray for our daughters recovery. An EEG was done and we were told that Makayla had little brain function. They believed she was sicker than Tristen and asked if we wanted to remove her from the ventilator. This was just too much. We immediately started a prayer chain from California to Tennessee. As the days went by her EEG tests got better. She was coming around and even coughed the ventilator tube out. I guess she had other plans. Makayla is now three. She, like her sister is severely physically and developmentally delayed. I have heard the term quality of life used several times over the last seven years. I personally hate that term. I believe if a person is happy and not suffering then they have a great quality of life. Our girls have had their ups and downs, no doubt, but they contribute to this world in a way that most never will. People are naturally drawn to them. My daughters have an angelic quality about them. I feel a sense of peace and closeness to God that I never felt before my girls were born. I think back to all of the what if's. What if we had not taken both Tristen and Makayla to the hospital when we did? What if we had waited just one more day? They would not be here today. Everything just seemed to fall into place. We do believe our girls are angels and we feel blessed that God chose us to be their parents.
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