What you know about me is that I am an author and have a daughter who was in need of a liver transplant. You may know of my children's book on the topic titled Angel Donor. However, there is so much more to our story than that. There were trials, dramas, fear, and a whole bunch of faith. Today,with Jackie's permission, I'd like to begin to share that journey with you.
Finally, she was here! December 9,2001 my second daughter was born. I held her in my arms just moments after her arrival. I studied her face as any mom has done in those first few moments. She had fine dark hair and she snuggled right up to me.
As I looked her over I noticed her coloring. At the time I was completely clueless about liver disease, but I noticed she seemed a little darker to me. I'm 100% Italian and she was a newborn so I chalked it up to her either having a more ethnic look than I had or she just had a little newborn jaundice. Nurses seemed okay with her and didn't show any concerns. Neither did a pediatrician.
Another thing that struck me was her first wet diaper. The liquid was very dark. I remember looking at it and thought it was odd as I never noticed that with my first born. However, I once again dismissed it and figured it was something that will improve with more feedings.
Speaking of feedings, she often ate very little. Her first weight check (at about 2 weeks old) showed she lost some weight since the hospital. Although it was normal for newborns to lose a little weight, they were concerned since she didn't eat as consistently. Her regular pediatrician was away for a few weeks. In the mean time, she had a few more weight checks with little improvement.
She also still had that jaundiced color to her, so the doctor suggested placing her in the sunlight to help break it down.
Determined to help her get rid of the jaundice, I was sure to place her in the sunlight where ever we were in the house. One clear memory of that was when I was baking banana bread. I brought her bassinet in the kitchen as we get a good amount of sunlight there during the day,
The time came for another visit to her pediatrician. She was about 3 1/2 weeks old. Her regular pediatrician was back and looked her over. He also felt her abdomen area and said he could feel her liver. This new information combined with her feeding, jaundice and weight issues caused him to order lab work. This was the first of many, many, many blood draws in her life. She was so good. However, as anyone can imagine she was pretty mad when she felt the needle.
A few hours later we got a call from her doctor who said her liver labs were very high. He got in contact with our local children's hospital, set up several appointments and ordered medication. At the time it was such a blur. I remember him telling me to fill the prescription right away because she'd need her liver functioning as best as it could for her radiology "scan".
I was a little nervous, but I had no idea what awaited us over the next few days. In the mean time, I tried to remain calm and continued to take care of Jackie as best as I could.
Up Next: The Diagnosis