“Although Ashley’s liver is failing, she isn’t sick enough to be placed on the liver transplant list. We were told that Ashley would need a new liver by the time she reaches puberty."
Ashley was born at the end of July in 1998, but her story doesn’t start there;her story begins when she was just a little peanut in my womb. At 24 weeks gestation we learned we were having a girl, but our little girl had something wrong with her. Imagine sitting in the examining room, and the excitement of learning you are having a girl, then at the same time you hear the silence in the room when something is just not right with the baby. We were told that Ashley possibly had an ovarian cyst. It was normal and not to worry. But something told us it was more than just an ovarian cyst.
As soon as Ashley was delivered she struggled to live. The umbilical cord was wrapped around her neck twice, and she was blue. Thankfully the doctor cut the cord immediately and although Ashley was still blue; she was breathing. Ashley was very yellow at birth; we were told that it was normal newborn jaundice. When Ashley was finally stabilized the nurses wheeled her away for an ultrasound, the first of many. A few hours passed before we learned that the ovarian cyst was really a choleductal cyst on her common bile duct. We were told the choleductal cyst would turn to cancer if not removed during the first six months of life. Despite all the chaos surrounding Ashley’s birth, we really didn’t think too much of it. We just wanted to enjoy our daughter.
Ashley was born at the end of July in 1998, but her story doesn’t start there;her story begins when she was just a little peanut in my womb. At 24 weeks gestation we learned we were having a girl, but our little girl had something wrong with her. Imagine sitting in the examining room, and the excitement of learning you are having a girl, then at the same time you hear the silence in the room when something is just not right with the baby. We were told that Ashley possibly had an ovarian cyst. It was normal and not to worry. But something told us it was more than just an ovarian cyst.
As soon as Ashley was delivered she struggled to live. The umbilical cord was wrapped around her neck twice, and she was blue. Thankfully the doctor cut the cord immediately and although Ashley was still blue; she was breathing. Ashley was very yellow at birth; we were told that it was normal newborn jaundice. When Ashley was finally stabilized the nurses wheeled her away for an ultrasound, the first of many. A few hours passed before we learned that the ovarian cyst was really a choleductal cyst on her common bile duct. We were told the choleductal cyst would turn to cancer if not removed during the first six months of life. Despite all the chaos surrounding Ashley’s birth, we really didn’t think too much of it. We just wanted to enjoy our daughter.
Our nightmare literally began the minute we got home from the hospital. We received a call from the hospital saying that we needed to bring her back because her bilirubin (jaundice) was alarmingly high, and she needed to be under phototherapy. Crying on the phone, I refused to take Ashley back to the hospital. The only way I going to take her back was if I could stay with her at the hospital. I was told that I would not be able to because she would be in ICU. I still refused, and finally the doctor made arrangements to have a phototherapy bed in our home. For two weeks, Ashley spent 24 hours in what we called her “portable tanning bed.”
During Ashley’s first two weeks, she was not held at all. We were only allowed to take her out of the “tanning bed” for diaper changes; I had to feed Ashley her bottle while lying on the floor next to this contraption that was robbing me of intimate time with my newborn daughter. The only other time Ashley was out of her “tanning bed” was for daily heal pricks for blood work. Those heal pricks left my little girl’s heals bruised and sore. Little did I know that those first two weeks would be the beginning of Ashley’s struggle to live.
Finally, Ashley’s bilirubin level dropped enough to allow me to finally hold her, for her brother to finally see his little sister, and for my husband to be the proud Daddy. However, Ashley was still sick and required more blood work, more ultrasounds and other tests such as CT scan, HIDA scan and surgery.
When Ashley was six weeks old she had surgery to remove the cyst. The surgery was supposed to take just a few short hours, but eight hours later our daughter was still in surgery. We knew then that something else was wrong. We prayed that she made it through surgery and whatever else was wrong wasn’t serious, and was easily fixed.
Finally the surgeon came out of the operating room to give us a report, a report we didn’t want to hear; a report we really didn’t understand. We were told that although Ashley was alive she would not live to see her first birthday because she had a liver disease that has no cure. We were told that Ashley would need a liver transplant in order to survive. Ashley has a liver disease called biliary atresia. I could barely say the words much less understand what it meant for Ashley’s future.
Ashley remained in ICU for weeks during which time she had to be resuscitated at least once. Remarkably, she looked beautiful even with all the tubes, wires and machines working to keep her alive. It was during this time that I fell completely and total in love with Ashley. There was no way I was going to let anything happen to her.
For two weeks after Ashley’s first surgery she did really well. She was eating, cooing, making eye contact, and she was even smiling. Then all of that went away. She wasn’t eating. She wasn’t smiling. She was miserable, and I didn’t know why. It was during a follow-up doctor’s appointment with my then two-year-old son that we learned Ashley was severely dehydrated. The pediatrician said that Ashley was lethargic and ordered us to go the emergency room. Ashley’s heart rate was extremely rapid. She was so dehydrated that they had to place an IV in her scalp. In the emergency room, the on-call physician came out to tell us that he was going to do everything he could to save our daughter’s life.
At three months old, Ashley was in the hospital again for another near death experience this time she had a bile leak. Her first surgery was not successful and causing bile to accumulate in her belly. Ashley’s belly was the size of a watermelon. I couldn’t even get a large diaper on her. We were told that the fluid affected Ashley’s kidneys, heart and other organs. Her kidneys were struggling to work. Her heart and lungs were being compressed by the significant amount of fluid. Again, the surgeons told us they would do everything to save our daughter’s life. And they did!
For several years Ashley did well. She was living as normal a life as we could manage with her chronic liver disease. She still spent lots of time at doctor’s offices and hospitals for various tests and procedures. Ashley didn’t look sick, and we felt that denial was better than living with the truth. The truth was that Ashley would still need a liver transplant.
Presently, Ashley still has her original liver, but it is scarred with cirrhosis and cysts. She has a spleen the size of a 20-year old, and she is at risk for major internal bleeding due to a low platelet count and portal hypertension. Although Ashley’s liver is failing, she isn’t sick enough to be placed on the liver transplant list. We were told that Ashley would need a new liver by the time she reaches puberty.
We don’t know what is in store for Ashley’s future, but we do know that we have time to make sure she has a chance for a future. That is why we have started raising funds to cover her current and future medical expenses associated with a liver transplant. Knowing that we have the money to cover a liver transplant will allow us to focus on the most important thing–keeping Ashley alive and happy!
During Ashley’s first two weeks, she was not held at all. We were only allowed to take her out of the “tanning bed” for diaper changes; I had to feed Ashley her bottle while lying on the floor next to this contraption that was robbing me of intimate time with my newborn daughter. The only other time Ashley was out of her “tanning bed” was for daily heal pricks for blood work. Those heal pricks left my little girl’s heals bruised and sore. Little did I know that those first two weeks would be the beginning of Ashley’s struggle to live.
Finally, Ashley’s bilirubin level dropped enough to allow me to finally hold her, for her brother to finally see his little sister, and for my husband to be the proud Daddy. However, Ashley was still sick and required more blood work, more ultrasounds and other tests such as CT scan, HIDA scan and surgery.
When Ashley was six weeks old she had surgery to remove the cyst. The surgery was supposed to take just a few short hours, but eight hours later our daughter was still in surgery. We knew then that something else was wrong. We prayed that she made it through surgery and whatever else was wrong wasn’t serious, and was easily fixed.
Finally the surgeon came out of the operating room to give us a report, a report we didn’t want to hear; a report we really didn’t understand. We were told that although Ashley was alive she would not live to see her first birthday because she had a liver disease that has no cure. We were told that Ashley would need a liver transplant in order to survive. Ashley has a liver disease called biliary atresia. I could barely say the words much less understand what it meant for Ashley’s future.
Ashley remained in ICU for weeks during which time she had to be resuscitated at least once. Remarkably, she looked beautiful even with all the tubes, wires and machines working to keep her alive. It was during this time that I fell completely and total in love with Ashley. There was no way I was going to let anything happen to her.For two weeks after Ashley’s first surgery she did really well. She was eating, cooing, making eye contact, and she was even smiling. Then all of that went away. She wasn’t eating. She wasn’t smiling. She was miserable, and I didn’t know why. It was during a follow-up doctor’s appointment with my then two-year-old son that we learned Ashley was severely dehydrated. The pediatrician said that Ashley was lethargic and ordered us to go the emergency room. Ashley’s heart rate was extremely rapid. She was so dehydrated that they had to place an IV in her scalp. In the emergency room, the on-call physician came out to tell us that he was going to do everything he could to save our daughter’s life.
At three months old, Ashley was in the hospital again for another near death experience this time she had a bile leak. Her first surgery was not successful and causing bile to accumulate in her belly. Ashley’s belly was the size of a watermelon. I couldn’t even get a large diaper on her. We were told that the fluid affected Ashley’s kidneys, heart and other organs. Her kidneys were struggling to work. Her heart and lungs were being compressed by the significant amount of fluid. Again, the surgeons told us they would do everything to save our daughter’s life. And they did!
For several years Ashley did well. She was living as normal a life as we could manage with her chronic liver disease. She still spent lots of time at doctor’s offices and hospitals for various tests and procedures. Ashley didn’t look sick, and we felt that denial was better than living with the truth. The truth was that Ashley would still need a liver transplant.
Presently, Ashley still has her original liver, but it is scarred with cirrhosis and cysts. She has a spleen the size of a 20-year old, and she is at risk for major internal bleeding due to a low platelet count and portal hypertension. Although Ashley’s liver is failing, she isn’t sick enough to be placed on the liver transplant list. We were told that Ashley would need a new liver by the time she reaches puberty.
We don’t know what is in store for Ashley’s future, but we do know that we have time to make sure she has a chance for a future. That is why we have started raising funds to cover her current and future medical expenses associated with a liver transplant. Knowing that we have the money to cover a liver transplant will allow us to focus on the most important thing–keeping Ashley alive and happy!
Comments
Peggy
ashley keep dancing your heart out!!!!