1. That she will make improvements in speech
2. Her kidney reflux will heal
3. She continues to grow
4. Her physical limitations will continue to improve
Lillian is swallowing very very small bites of food in very small quanitities.
After many surgeries and time her trach site is closed
She was born to us as our fifth daughter. We anxiously awaited her birth and due to complications with Mommy, Lillian came into the world a little over 3 weeks early. It was immediately obvious that she was in distress. She was unable to breathe or keep her oxygen levels up. She was quickly transported to our Children's hospital in Indianapolis. She was on a vent by the next afternoon and we were told she was suffering from Pierre Robin Syndrome and Pulmonary Hypertension (high blood pressure in the lungs) Genetic tests were ordered and something new developed hourly. Her heart and kidneys had defects as well. By December 5th, we were taken to a room and told our daughter would need a trach tube to breath, she would need major heart surgery and she also had a rare chromosome defect. She has a deleted portion of chromosome and a trisomy that are intertwined. We were told that 70% of children with her deletion died by age 1 or 2. They did not know how her life would play out since she had a complex case. She also has a cleft palate, overlapping toes and some facial features that are common with the genetic diagnosis. She also suffers from a brachial plexus palsy in her left arm due to some of the complications of her birth. Her story continues in the pages of her diary. We covet your prayers for her well being and our family. We are so blessed to be Lillian's parents and know God has a perfect plan in all of this.
"Your eyes have seen my unformed substance; And in Your book were all written The days that were ordained for me when as yet there was not one of them." Psalms 139:16