Julia was born by repeat csection Dec. 5th 2008, she was our second daughter, an early christmas gift! we were told prior to her birth that it seemed as though there may be some extra fluid on her brain and i was moved to high risk care. Little did we know, the extra fluid on her brain would be the least of our worries. very shortly after birth Julia required oxygen to help her breathe and was taken to the NICU. she was born with a head full of beautiful hair!
4 days after her birth we were told that Julia has CHARGE syndrome, something we never heard of and never imagined. our lives were turned upside down and our emotions were like a rollercoaster. some of the first issues noticed were julia's problem with breathing, she had trouble swallowing, and had a hole in her heart (ASD and VSD). we later learned that with Charge Syndrome these were typical signs. Julia had a gtube placed on Dec 14th, and had open heart surgery to fix her holes when she was just 3 months old. she also had her trach surgery 3 weeks after that. another 4 weeks in the NICU and julia came home, just in time for her daddy to leave to iraq again. she was home for 2 weeks before being taken to the PICU for 2 weeks due to a cold. Julia is doing much better now and we are so happy to have her home! her heart is doing wonderful and the cardiologist is very pleased.she has been weaned off some of her medications, and recently weaned off oxygen during the day only requiring it at night with her humidifier. Julia had her vision tested and so far we arent entirely sure what she can see, i know she can see light and we think she may have some vision in the lower area of her eyes. she had a hearing test done, but it wasnt done completely, the test showed she was deaf, and she was fitted for pearly pink hearing aids, however thru therapy and play at home we believe she is able to hear at least some. during her open heart surgery one of her vocal cords was nicked and it is now paralyzed. sometimes the vocal cords will return to normal and sometimes not, time will tell. we are hoping to have the trach removed next spring and begin teaching her to eat by mouth! so far she is doing great with dum-dums :) along with Charge syndrome can come many visual affects, the only one that effects her is the CHARGE ears, her ears look a bit like elf ears,...considering she was a december baby its appropriate. Julia has enriched our lives in so many ways, we have grown, learned, and felt such love! she went from a early christmas gift to a TRUE Christmas MIRACLE!! she is OUR snowflake:)