And She Writes too

For 9 1/2 years I have witnessed a miracle. For 9 1/2 years, I prayed for a miracle. For 9 1/2 years, my miracle wakes up in the room next to mine. My daughter, Ashley, isn't supposed to be here according to her doctors, she wasn't supposed to make it past her first birthday. Each time my daughter wakes up is a miracle.

It was late July 1998 when Ashley was born. She was born with the umbilical cord tied around her neck a couple of times, her lips were blue. As the doctor tried to unravel the cord, the nurses were trying to feel for a pulse. Finally, the cord was cut and Ashley let out a little whimper. She was immediately taken to Pediatric Intensive Care and put on a ventilator. My pregnancy with Ashley was high risk, but I had no idea how high that risk was until she was born.

At two days old, it was discovered that Ashley had a precancerous cyst on her common bile duct near her liver called a choledochal cyst. A choledochal cyst on a newborn is rare and if not removed would become cancer. Hearing the word "cancer" scared us and we feared for Ashley's future. Ashley spent her first two weeks of life going through a series of tests. She would have labs drawn two to three times a day, an ultrasound every week, a biliary scan every few days and she was on 5 different medications. During this time, I remember feeling like I was living outside myself and someone else was living this nightmare. I also remember thinking, it would be worse; she could have cancer and we would be saying goodbye to our daughter before we could she could say hi. Little did I know that our nightmare was yet just beginning.

It was hard focusing on Ashley’s health and dealing with our then two year old son. At this time my husband was traveling 320 days out of the year so I was literally handling all of Ashley's medical care and still taking care of our son by myself. There were times that I literally slept walked through the day. Looking back, it's pretty remarkable that I managed all that I did and still gave my son a normal life.

When Ashley was home and not in the hospital we thoroughly enjoyed her, she was such a beautiful baby. She looked nothing like me; I have blonde hair and brown eyes and Ashley had reddish-brown hair and dark blue eyes but there was no doubt that she was her father's daughter. Despite having needles in her arm and taking really horrible flavored medications Ashley was always good baby.

When Ashley was six weeks old, we made plans to take her home to Alabama to have her baptized in our family church. We were very excited to show Ashley off to family and have her baptized on her daddy's 34th birthday. However, before we could travel out of town we had to get approval from her doctors. We took Ashley to visit with her doctor and we were immediately told that Ashley needed surgery now and it couldn't wait. We were stunned, all I could say was, "wait we can't, she hasn't been baptized." The doctor gave us one day to get affairs in order and to arrange someone to care for Ashley’s big brother, Brad.

It was important to me to have Ashley baptized and I became very upset that she would not be baptized before her surgery. Ashley's pediatrician called me during one of my more emotional moments, when she asked me what was wrong, I was calm as I told her that Ashley needed surgery but frantic when I told her that Ashley wasn't baptized. She told me not worry that Ashley was a child of God and she would go to heaven even if she was not baptized. I knew she was right but I still wanted her baptized.

On September 18, 2008, Ashley was baptized over our coffee table in our family room at 10:30 p.m. by a Lutheran pastor. Ashley's pediatrician had found a Lutheran minister who would be willing to baptize Ashley at our home no matter what time of night. Our pediatrician did not know we were Lutheran but yet she found a Lutheran minister. The next day, Ashley had surgery.

Ashley's surgery was supposed take a few hours but eight hours later and Ashley was still in surgery. Handing my daughter over to a nurse was the hardest thing I ever had to do. I remember watching the nurse walk down the hall with my daughter in her arms, wondering if I was ever going to see her again. The last thing, I did was give Ashley a kiss on the forehead, and as she was taken from me, I sang, "please don't take my sunshine away." As the doors to the operating room shut behind my daughter and her nurse, I prayed for a miracle.

The hours waiting for Ashley to come out of surgery were the most difficult in my life. Those hours seemed to take days to pass. Those hours allowed me to think, to think things I shouldn't; things like what if she dies, is my baby dead, what if she can't be fixed, what if I can't help her. Sure I prayed, I cried, but I couldn’t stop thinking that something horrible happened.

Finally, almost 8 hours after Ashley was taken to surgery, her surgeon walked into the surgery waiting room. All of the other surgeons spoke to their parents in the waiting room; we were escorted into a private room. I remember grabbing my husband’s hand and squeezing it; he squeezed back. As we sat down across from the surgeon, we learned the cyst was removed and was not cancer but that Ashley had a liver disease. Her liver disease was called biliary atresia. Bilary what? The surgeon went on to explain that her disease would require her to need a liver transplant before her first birthday or she would not survive. We were in the private room for 30 minutes talking to the surgeon but all I heard was liver disease, liver transplant, no cure, no cause and would not live. This could not be happening.

After our talk with the surgeon, my husband and I didn’t say a word to each other; my husband was in tears and I was too stunned to talk much less cry. As my husband called my mom with the news, I just slid down the wall in the hospital hallway, put my face in my hands and cried.

Ashley came out of surgery well, but she was placed on ICU and on a ventilator. The horror of seeing our tiny six week old baby girl with wires, tubes and monitors keeping her alive was not something I wanted to remember much less experience. Ashley was swollen; she was very yellow; she didn’t look anything like the beautiful baby I handed to the nurse hours ago. It was at that time that I realized how sick Ashley really was. It was also at that time that I prayed, “God, you gave me this beautiful baby to love and care for over 10 months ago and I am not going to let you have her back.” “God, she is my child now and I will raise her to be a child of God but you cannot take her from me now.”

Ashley spent several months in and out of the hospital her first year of life, she had to be resuscitated several times. Twice we had doctors tell us that they would do everything possible to save our daughter’s life. More than once I had to tell Ashley’s big brother that Ashley may not come home from the hospital. No parent should ever have to go through what went through with Ashley during her first year of life.

The reason I believe in miracles is because I live with one. The doctors cannot explain why Ashley is still here but I can; she is a miracle from God. During Ashley’s first year there were many miracles witnessed. However, even now 9 ½ years later we are still experiencing miracles. Ashley still has her originally liver; she hasn’t been transplanted yet. The doctors said she would make it past her first birthday but she did; she has had several birthdays since and that’s a miracle!

I know that we will continue to experience miracles surrounding Ashley. We hope to experience the miracle of liver transplantation. We hope to experience the miracle of a cure. Miracles do happen, if you don’t believe, just look at my daughter.