The purpose of this fundraiser is to be able to help pay for medical expenses that is needed now and in the future including medication costs not covered by insurance carrier, liver transplantation costs, unexpected medical expenses, research and any family-related expenses that may occur. With the help of our family, friends and acquaintances, we know this huge burden will be lightened. Please pray for strength and wellness for our Lili!
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On October 4, 2013, our world was blessed with the beautiful and passionate, baby girl, Liliana Jay Moore! Liliana Jay was born at Yale-New Haven Hospital in New Haven Connecticut at 7:30 am. She came into this world after five hours of labor. She was a healthy 8 lbs 10 oz and everything seemed to be in order. We counted her toes and fingers and were in complete “awe” by our baby girl.
By her third day the doctors gave us the ok to take her home and we couldn’t be more excited…. And nervous as any new parent would be. When we left the hospital it was brought to our attention that her bilirubin was still elevated but within a range to where the hospital staff felt comfortable sending us home stating “It would decrease over the course of the next 2 weeks.” (1)
When we arrived at home we began experiencing all of the exciting new things that newborns do; like eye rolling, sneezing, feeding, napping, making weird faces and pooping of course.
It wasn’t until 3-4 weeks after we came home that she began appearing a little on the tan side. We discussed this concern with our pediatrician who assured us that it was something called breastfeeding jaundice(2). Since Lili was only receiving breast milk at the time we took this diagnosis at face value and went on our way thinking that over the course of the next few weeks the jaundice would resolve. At this time, Jayme (Lili’s mommy) and Lili had been attending a lactation group as well and Lili was able to receive transcutaneous bilirubin(3) checks when they attended. This allowed us to keep track of her levels. A rotating group of pediatricians also attended the group to answer any questions breastfeeding mothers might have. They expressed some concern in her bilirubin levels and jaundice appearance but didn’t take any farther action because we told them that our pediatrician was aware.
As time passed Lili’s levels slowly climbed and her jaundice never subsided (although some days were better than others). When Lili was approximately 10 weeks old we began to notice that her stools were very pale in color. Upon hearing this new sign the pediatrician at the lactation group advised us to bring her to her primary pediatrician office right away. After a short visit at the pediatrician office, we were sent to the emergency room.
While in the emergency room they drew blood from Lili to run liver function tests and they explained to us that there are many causes of jaundice and that breastfeeding jaundice was most likely the cause. This seemingly common assumption was dispelled when a number of the liver tests came back extremely high. Over the next 12 hrs in the emergency room she received additional blood tests and an ultrasound; which all confirmed her liver was enlarged and there wasn’t adequate bile drainage. As stated before, there are many conditions that can cause jaundice. One of the more time sensitive diagnoses is Biliary Atresia (BA), a disease in which the hepatic ducts that drain bile into the intestines either do not form or do not function and bile begins to collect in the liver, damaging it. Biliary Atresia is the leading cause of liver transplantation in children, which then led to the next step in the process: a liver biopsy. The presence of excess bile ducts may indicate biliary atresia. This is exactly what was found but to confirm this diagnosis an intraoperative cholangiogram (4) would need to be performed. The procedure took place 5 days later on December 20th 2013 and was to be immediately followed by a Kasai procedure (5) if Biliary Atresia was the finding and this is exactly what happened.
The moment we heard that she had Biliary Atresia we were in a state of denial followed by a mixture of anger and sadness. Our thoughts were not only is BA a life threatening disorder but it would also put our daughter at a significant disadvantage, in multiple aspects of life, from the start. Regardless, our love for Lili was unconditional and we began digging in for the long haul, knowing we would get through this together.
The Kasai procedure took 6 hours and went well. Lili recovered fast and we were released on Christmas day. It was the best Christmas present to say the least!
Please continue to follow her story athttps://www.facebook.com/liveR4lili?fref=ts