Meet 9 month old Robyn…
This little warrior knows her way around a hospital, but right now she’s enjoying life at home. Her mom, Eleanor, and I managed to organize a session at Ronald McDonald House when their whole family would be in Edmonton for a few of Robyn’s regular Stollery appointments.
Robyn’s recent successes include: learning how to sit up, gaining 10 pounds over birth weight and developing faster than expected! Below Eleanor and David describe some of their story,
While pregnant Robyn was diagnosed with CHD (VSD, interrupted aortic arch, and small aorta valve), fluid backup in kidneys and calcium deficiency. After she was born they also found ASD and artery to right arm is connected to wrong part of her heart. At about 3-4 days old she became sick and discovered she had severe infection in her bloodstream. She was sedated and fully paralyzed to help her fight the infection which also delayed her open heart surgery. On December 17th she went into open heart surgery where her two holes (ASD and VSD) and arch was repaired. On January 4th at 9 am during a regular echo they discovered an aneurysm and the arch was compressing from scar tissue. At 4 pm she was in an emergency open heart surgery once again. Recovery after that was long. She had feeding problems and would need oxygen on and off again. The next day she was officially diagnosed with 22q11.2 Deletion Syndrome (aka DiGeorge Syndrome or Velo-cardio Facial Syndrome). On February 21st we made it home for the first time. Since then. We have been back to the stollery 1-2 times per month with most of them being hospitalized due to illness. She was NG Tube fed and when we finally did swallow tests in June we found she was aspirating and therefore would not be able to feed orally. July 27 she had another surgery placing her peg Gtube in hopes to resolves her swallowing issues which caused inflammation in her lungs. She has spent most of her life so far in hospital beds or at least in the city away from home.
Robyn was described by her family as a “fighter, joyful, and a superstar.” And she handled our shoot like a pro!
Jesse was looking for more action!
Oh and I just bought my tickets for the Mighty Millions Lottery in support of the Stollery Children’s Hospital. As a cardiac mom myself I have to put in a little plug ; )