It’s been nearly a year and a half since our sweet little Brielle joined our family but her story began long before that. At 18 weeks along in the pregnancy, we had an ultrasound to find out the gender of our newest family member. We were more than excited to find we were having a second girl. We thought that was the biggest news we would hear that day but our world was turned upside down when the doctor began to explain he was concerned that there may be some complications. We spent the months to come, waiting, wondering and worrying. Although we had many ultrasounds, we had no definitive information on what we would encounter when our baby was born. On July 12, 2013, a 7lb 6oz little girl was taken to the NICU before we ever even got a chance to see her. After what seemed like forever the doctor came in to give us an update on our baby. He had a list from the top of her head to the tips of her toes of things that were wrong with our baby. Brielle was sent to Primary Children’s Hospital while we were at the University of Utah. Two days later, we left for home without our baby. That first week of her life we had to sit down with her medical team and make decisions no parent should ever have to make. When given the diagnoses of Beare Stevenson Syndrome, the doctors informed us that with what little information they had, things would indicate that she may not live long and that she would likely spend most of that short life in a great deal of pain from the surgeries that she would require. When given the option to continue her care, we saw it as the most difficult decision we would ever have to make. We chose life! We wanted to give her every chance to survive and beat the odds. It was always discussed “if” she makes it home, rather than “when”. Brielle was in the hospital for over two months following her birth before being discharged to home. We were only home for 10 days before she was admitted again. She was home for another three days, then admitted again. This happened many times. Each time Brielle was admitted we feared we would be leaving the hospital without our sweet girl for good. She has since had many surgeries, been hospitalized countless times and given us many scares that we are losing her. Our