I am also calling in the troops again as Ella will be having surgery at Sick Kids on September 13th. We need your prayers and positive energy to help this little angel get through some of the struggles ahead. I wholeheartedly believe that sharing Hazel's experience with you all was one of the best decisions we have made. Your constant and unconditional love and support for our baby while going through such a tough time was an insurmountable relief. Reading your thoughtful and encouraging comments nightly reminded us that there is something larger at work here and you are all a part of it. Ella needs you now and I know that she will be loved and encouraged just as Hazel was...THANK YOU!!!
Ella's mom heard about Hazel through a mutual friend and the nurses in the London NICU. Ella is facing some of the similar challenges that Hazel had to face at such a young age. She is another tiny fighter who is determined to beat the odds with a smile on her face. Here is her story...
Ella was born on March 22nd, 2012 at 36 weeks 4 days, weighing 4 lbs 15oz. She spent her first 4 weeks in the NICU where Hazel stayed. She was born with Down Syndrome and a heart condition called an AVSD. This heart condition is similar to the VSD that Hazel had. The challenge for Ella, like Hazel, is that she burns too many calories while she eats, which makes it difficult for her to gain weight. The challenge for her mommy and daddy is that they must feed her every 3 hours round the clock even though she is probably old enough to sleep through the night. As a parent who has gone through this exact situation, you do it gladly for your child because you know that is what is best for them, but you secretly pray for a solid night sleep. Although Ella is doing a fantastic job eating as much as she can, she is still not putting on enough weight. As a result she had to get an NG (feeding tube) until her surgery. She apparently doesn't like it and tries to pull it out all the time. Sound like anybody else you know?? Another feisty one...love it!!!
Ella is a VERY happy baby who enjoys playing on her play mat, having the occasional conversation with her toys and loves to be with people. She is impressing her parents and community daily by developing with flying colours despite her heart condition. According to the "Ages and Stages" developmental assessment for typical 4 month old children, Ella, when she was 4 months old, was in the normal to high range for social skills, fine motor, communication, and problem solving. She was in the mid range for gross motor, which is expected as she has low muscle tone and a heart condition. At a more recent appointment she impressed again. She chatted away and smiled at everyone, demonstrated her tummy time, rolling-over and fine motor skills. What an amazing little girl...great job Ella!!!
I think it is important to note that Ella's mom and dad knew about the challenges that Ella would face while she was growing in her mom's belly. They anxiously awaited the arrival of their little miracle, knowing she was a little different than other babies. Knowing she was going to need a little extra care and attention because of her heart condition. Embracing all that their daughter was going to offer them...and the offerings have been endless. She brings laughter, joy and tenacity to them everyday. Ella's parents encourage the education and advocacy of those with Down Syndrome or heart defects just as we do and are happy to be on the path to raising awareness and knowledge for all those with Trisomy 21.
Although we have not yet had the pleasure of meeting little Ella or her parents we are huge supporters of this family and one day hope that our little miracles will join hands and grow together. We will be praying for Ella and keeping everyone updated with her progress as she continues her fight and impresses all that she meets.
Good Luck Ella we will all be praying and sending positive energy your way as your surgery approaches....from your friend Hazel