This sweetie, Lilly was born February 27 with a very rare chromosome abnormality which has resulted in a long stay in the NICU and PICU. Her journey began shortly after birth when she was in respiratory distress and was air lifted to the NICU.
Lilly’s rare chromosome abnormality is an 11 duplication (11q11-q14.3). This chromosome abnormality has never been documented before and is one of the largest duplications that experts have seen covering over 100 different genes. Because it is so rare, the doctors do not know how this will affect Lilly as she gets older, and have very little information to learn from. Along with the chromosome duplication Lilly has congenital heart abnormalities (PDA, ASD, bicuspid aortic valve), restrictive lung disease requiring constant oxygen and low muscle tone that will require physical therapy. A swallow study showed that she had uncoordinated feeding and she was aspirating whenever she ate by mouth. Lilly had another surgery for a GJ tube, heart surgery and a tracheostomy. She is currently on a ventilator and receives continuous feeds through her GJ tube.
Lilly’s mom and dad call her the strongest little girl they know with an incredibly bright smile. Her nickname is Lilly Bug and mom and dad are spending every waking hour trying to get her healthy enough to come home. Despite being the biggest blessing ever, this family has had quite a journey with their little bug. Eden’s Garden was happy to help this family with a financial gift during this journey.