Ashley Anne S. - Quilt Finished in 2005
Born: September 25, 1995
Illness: Cystic Fibrosis
Ashley Anne's Story
written by mom Sherrie
According to Webster’s Dictionary, love is strong affection for another arising out of kinship or personal ties.
Biblically, love is patient and kind.
My biggest lesson in love came from my youngest child. I had been blessed with two easy pregnancies, and two healthy boys. Now love was going to push me in a new direction.
I had gotten the news that “it was a girl” a week before I was put on bed rest. I spent four months of summer begging the boys to behave and hoping that I would have a healthy little girl in the fall. I went into labor on my due date, but an ultrasound check showed that something was wrong with the baby’s lungs. I was medicated and returned home to bed again. An incorrect due date was suspected and I stayed in bed three weeks longer, helping her lungs develop.
My little girl, Ashley Anne, came into a world that did not understand what it was like to be her. While we were in the hospital her bilirubin levels were chronically low, and she was stuck in the foot for blood so many times that her feet looked like pin cushions. The physician discharged us with the instruction that Ashley Anne come to his office in two days to be checked. The first visit showed a gain in weight of two ounces, but she was still borderline jaundice. Again instructions for home care were given and we were asked to bring her back in for regular checks.
Each of these checkups showed improved bilirubin levels, but they also showed that she was no longer gaining weight. While each of her brothers grew at the rate of a pound a week, Ashley Anne lost the initial weight gain, and never gained again. I would bring her to the pediatrician’s office daily, and beg for an answer. The pattern became so intense that the pediatrician began to suspect I was the problem. Twice I came to her crib side to find that her hands and feet were purple, and I feared that the day would come that I would be too late and she would be gone. The pediatrician advised that since Ashley Anne was not a fat baby, she was cold and I should put socks on her feet and hands.
WRONG ANSWER.
I persisted, I pushed and I did not give up. We arrived in the pediatrician’s office by 9 am every morning and ran every test that was imaginable. Love pushed me on, and I would not back down, I did not care what the staff thought of me.
Finally, two days before her first Christmas we saw a different partner in the pediatrician’s group. It took her only minutes to assess the situation and tell me she would be admitting us to the Children’s hospital.
Ashley Anne was admitted hours later for failure to thrive; at three months of age she actually weighed 2 ounces less than her birth weight. Lab tests showed that she was severely malnourished, and she was given a central IV for administration of protein and albumin. She was moved to a new formula, Progestimil, a product that would require very little work by her digestive system for metabolism. The days rolled into weeks, Christmas day came and went and we were still in the hospital. Finally, a diagnosis was made “gastrointestinal protein losing enteropothy” and she was discharged.
I interpreted the diagnosis as “we don’t really know what was wrong, but she appears to be better”. We watched her improve and gain weight for the first time in her life. Her improvement in nutrition would lead to the discovery that would change our lives forever.
In March, we took our family to church and left Ashley Anne in the baby nursery for the first time in her life. When we returned a nursery worker told me that “she tastes like salt when you kiss her”. Tasted like salt means only one thing, and I thought it had been ruled out during the December hospital stay.
I called the pediatrician and told him directly, “We did a cystic fibrosis test and that was negative, so – is there any other condition that would cause Ashley Anne to taste like salt?” He ordered a repeat of the sweat test immediately, and Ashley Anne’s levels were so high that the lab tech administering the test burst into tears upon reading the results.
Love pushed us through another door together.
Ashley Anne was diagnosed with Cystic Fibrosis on March 17, 1996.
Since that day, love has scared me, love has comforted me, and love has driven me to the edge – but love always brings me home. There have been trips to the ER that I thought would be the end of the road; there are also trips to the beach for sunny vacations, and trips to the country to ride ponies.
For every fear there has been hope, and for every moment that I doubted – love has given comfort and answers.
I know that this is a road, and we are traveling it together.
Love will continue to teach, and we will continue to learn.
Love is a million things and always pushing you to places you never thought you would see.
Love is brave.
Love is eager.
Love is hope.
Love is peace.
Love is living.
Love is Ashley Anne.
Written by Ashley Anne's mom Sherrie
