The First Surgery #JackiesStory

The days before Jackie's surgery went by in a rush. While we were still at the surgeon's office the day of her diagnosis, the doctors were already scrambling to set up a date for surgery. They insisted the earlier, the better. With Biliary Atresia, the longer the bile flow is blocked, the more damage is done to the liver. I didn't know it then, but as I learned more about the disease, I found out that this surgery(called the Kasai procedure) worked best if it was done within the first four weeks of life. The longer we waited, the less likely it would be successful. The Kasai essentially is a surgery to create another way to restore bile flow by attaching the intestines directly to the liver in place of the damaged bile ducts.

                                                         Jackie and Mom a few days before surgery

The morning of Jackie's surgery I felt like I was caught in a dream. We were moving around, gathering her things and making sure we were ready to go.At the same time, I was full of anxiety. What was going to happen? What if something goes wrong? Will her liver be okay?  I remember my husband at the time took a picture of me holding her. I wasn't sure how I felt about it at the moment (though now as I look back, I'm glad he did.) since my mind was racing with such anxiety. 

The whole process of checking into the hospital and arriving to Surgery seemed so detailed, however as the years moved on, it became a second nature to us. We checked in and waited in the waiting room. A few moments later we were called by a nurse to the intake area. We had to change Jackie into a gown as the nurses gathered all her information. We met with so many people: nurses, her surgeon, the anesthesiologist. Finally the time came for them to take her back to the surgical area. 

This was a moment I still remember clearly. There are few times in life when a memory is so clear and so vivid that it seems like it just happened. This was one of those memories, I gave her a kiss and then the nurse gently took Jackie from my arms and began to walk away with her.  As they moved, they became smaller and smaller until I could barely see Jackie's yellow gown. My only thought, even though I knew she would be well taken care of, was , "They took my baby." I tried not to think of all the "what ifs" that ran through my mind earlier. 

The next several hours seemed endless. The doctors sent updates out to us as time went on, but I was still a bundle of nerves. Finally, around 6:00, Doctor M, (the surgeon) came up to us. He told us she was out of surgery and should be waking from the anesthesia shortly. He then talked about her liver. He was so relieved we had the surgery so quickly. The condition of the liver was pretty bad. He said the color was brown. I had a maroon sweater on that day and he said a healthy liver is more the color of my sweater. He reassured us that they will do everything they can to get her better.

After the surgery I began to seek out online support groups. My favorite has always been Class Kids.This is an amazing website dedicated to helping families of children born with liver disease.  I'll talk more about them as the posts go on, as they have been with us for much of Jackie's journey.  

Once we came home a few short days later, I knew we had a long way to go, but hoped this surgery would provide her some healing. Stories I heard about other babies who had the Kasai procedure gave me hope. There were some "babies"  who have gone all the way into adulthood without many complications. As for us, we were grateful she made it through the surgery fine and we took it one day at a time.  

The Diagnosis #JackiesStory

Before we knew it, we were on our way to Jackie's appointments.  The first stop was in Radiology for a Hida Scan, a test that can diagnose diseases of the liver and bile ducts. She had to get an IV with fluid that would make the liver and bile ducts visible in the image.  

After that, we went to see the GI doctor. At this point we were getting tired and were continuing to hope that this was all about the doctors being cautious. However, those hopes diminished when we visited the GI. As we waited in the exam room, I changed her diaper. Right in the middle of that, the GI walked in and asked to see it. The contents were a pale white. He expressed concern at the coloring and told us he was going to send us to the surgery office immediately. When he returned from contacting Surgery, he briefly explained that the white color in her diaper was a sign that there was no bile leaving her liver. 

I was too confused and shocked to really react to what I was told. At the moment, I was still experiencing the situation, and everything was moving too fast to react right away. I do remember that as we pushed her stroller across the parking lot to the main hospital, I had an epiphany. (I had lost my job at the end of my pregnancy and was questioning my direction in life). It was at that moment when I knew. This was what I was here for. This is what I was put on this earth to do. 

Jackie Pre-Surgery

Once we arrived at the surgeon's office, things seemed to move even faster. Doctor M already had all her information in front of him. He explained that what our baby had was called Biliary Atresia. In my head I wasn't even sure I heard that right. "Billy who," I asked myself.  The doctor explained it in concrete terms for us. He described it as imagining you are trying to get out of your front door and instead of an open door, there is a brick wall. There is no way for you to get out. He explained the bile ducts (the doors in the liver) are blocked (the brick wall) and can't exit the liver.  He explained this leads to scaring and infections. I think he knew we weren't ready to process the fact that it can also lead to liver failure.

He then told us that he wanted to do the Kasai procedure, a surgical procedure to help restore some bile flow in the liver. He told us that it may not be a permanent fix. He had us wait in the waiting room as he scheduled the surgery. He said it worked best when done within the first month of life. Yes, this was all before she was 4 weeks old.

I don't remember much from the blur of that day, but I do remember getting a call from the pediatrician's office while we were still at the surgeon's office. The doctors and the surgeons were telling me that this disease was not my fault or the result of anything I did when pregnant. 

We finally left the surgeon's office. I'm not sure how I was able to sleep that night. I was still processing the last 3 days and nothing seemed "real" at the time. I knew I had to get some rest, though because we had to be ready for the surgery that would be happening in just a few short days ahead. 

Up Next: The Surgery

From the Beginning #JackiesStory

                                         INTRODUCTION

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. 

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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