Posted on February 02 2018
Meet Emma, as introduced by her mother, Natalie:
August 17, 2016. The day that I'll replay in my head 100 times. The longest day of my life. Sometimes it seems I'm trapped in that very day, so tired, waiting for a night of rest that never comes.
August 17, 2016. The day started as any other. Breakfast, getting the kids started on school and chores. It was a Wednesday, so I left the older kids to watch the younger ones, taking only 3-week-old Emma with me to Bible study. I had noticed our sweet new girl had been looking increasingly yellow over the last week, so she had a doctor appointment scheduled just after Bible study. While at Bible study, I got a call that Emma's newborn screening had detected that she had Cystic Fibrosis (which was not completely unexpected due to one of her older brother's diagnosis of the same). After swallowing that news, we set out to her appointment, where we found her bilirubin levels to be very high. She was admitted to the hospital, and testing began.
It lasted all night and into the next day. This perfect baby had a cyst blocking bile flow and would need surgery to remove it and her gall bladder. Emma had a very sick liver.
Emma has since had MRIs, ultrasounds, a G-tube and a Broviac placed, and many labs and meds. She has been evaluated for transplant, and we await the decision. She has already tested positive for a dangerous Cystic Fibrosis bacteria that we had all hoped wouldn't show up for several years.
Every day we fight for Emma's liver (and lungs). Every day we fight for her to grow. Some days we are victorious. Every day I see tiny miracles that give me hope. "God is good and His mercies endure forever."