Princess Lily
“When you are a nurse you know that everyday you will touch a life or a life will touch yours.” (Author Unknown)
In January of 2009, I walked into the bustling, noisy, and hopeful atmosphere of the Neonatal Intensive Care Unit. I approached my “row” of precious babies just as I did every shift. I received report from another RN and began my assessments. I formed a bond with most babies I cared for but I will never forget the night I first cared for Lily. She was the most beautiful, sweet, pot-bellied but tiny baby I had ever seen. I expected her to be hard to bottle feed considering her size but she amazed me. This girl could eat more breast milk than the babies twice her size! She wore a tiny white bow in her blonde hair and was so much fun to cuddle.
Lily was born at 33 weeks gestation weighing 3lb. 8oz. to the most amazing parents, Scott and Heather. Their first baby! What a little miracle to parents who were told it was highly unlikely for them to have a child of their own. I remember Daddy would call to check on his princess on the hour. He was never late. It is scary for anyone to hold a premature baby because of their size. Scott chose to hold Lily and bond with her even though his impaired vision did not allow him to relate the loud ringing of Lily’s monitor to a drop in her heart rate or just a simple malfunction with the equipment. Scott’s kind heart, intelligence, friendliness and motivation for his family impressed me so much.
Lilliana’s Momma is an angel in disguise! She is beautiful, smart, funny, hard working and the most selfless person you will meet. I remember her working so hard to learn everything she could about Lily’s care to do the most she could do to help Lily. Being a NICU parent is very difficult because you have to leave your child at certain times during their care. At this facility, parents were not allowed to spend the night at the hospital. Heather’s heart ached to be with Lily. She felt helpless. The NICU stay for Lily was finally over!
At 3 months old, Lily terrified her parents when she had her first infantile spasm. This was the beginning of a long, scary road full of questions and worry for their sweet daughter.
**Please be patient as we are updating this website. Its entire purpose is to provide extended prayer and financial help to our close friends. Many of you may not know this family but we ask that you please say a prayer for their unique challenges in raising a beautiful daughter with tuberous sclerosis.
Thank you for your support! All donations with will go towards the benefits of Lilliana Grace.
