Tags archives: AVSD

  • Jax's World

  • Shortly after Lily came home, Jess was talking to a woman who said to her, "I've heard about people like you."  A little taken aback, for a moment Jess wasn't entirely sure which of the "like you" categories the woman was referring to - lesbians or parents who had chosen a child with Down Syndrome.  The woman was refer[...]
  • The Faces of PVS

  • The moment that Lily's surgeon started talking is captured like a snapshot in my mind.  For me, it's the line in the sand that defined "before" and "after".  We, unlike so many parents of children with Congenital Heart Defects (CHD), knew of Lily's original heart issues, AVSD and Coarctation of Aorta; we were prepared [...]
  • #500 for 5

  • 5 years.  Since just after that horrible day 4 years ago, the goal has been 5 years.  "Take her home and grow her," they told us, "if the day comes when she needs a heart-lung transplant, the success rate improves dramatically once a child is 5."  It seemed impossible.  5 years felt more like a lifetime, especially whe[...]
  • The Amazing Constant Chaos

  • When you parent a child with special needs and any type of medical needs, you often hear people say, "I don't know how you do it."  Most of the time I just shrug it off because I don't always know either, but as a parent, you don't think about it, you just do it. However, in the past two weeks, I've started to quest[...]
  • Saying Thank You

  • On July 14, 2011 at 7:30am, 2 men became our family’s heroes. From that moment on it seemed incredible to me that we had barely spoken to them, didn’t know their names and never had the chance to say thank you. How was it possible that there were people just out there that had played such a huge role in our lives and w[...]
  • Cardiac Kids

  • By being a, "heart mom", we get to see a lot of amazing things that happen on the 4th floor of Sick Kids.  The staff - doctors, nurses, OT's, dieticians, child life specialists - they all play such a huge role in making incredibly scary situations actually seem managable.  Luckily, behind them, is a group called Cardia[...]
  • A Post Full of Heart...

  • February is Heart Month - the month that celebrates love also takes a little time to bring awareness about CHD (Congential Heart Disease) to the forefront of people's minds.  Yesterday my Facebook page, twitter feed and blogrolls were all filled with people sharing their experiences - hopeful experiences.  I struggled [...]
  • Fierce

  • If, fifteen years ago, you had told me that I would be able to sit in a room, reading medical records and understand the following sentence, "loss of grey-white differentiation consistent with Hypoxic Ischemic Encephalopthy; insult occurring in the bilateral parietal, temporal, occipital lobes and occurring the the pos[...]
  • Happy Heart, Happy Birthday

  • Cardiology came and went.  They sedated, they scanned, they saw, they pronounced her heart strong and her lung pressures stable.  They said to come back in a year.  It was music to our ears. There was a moment, one breath-holding, heart stopping moment.  While Lily was conked out from the sedation (which was rare in[...]
  • "Today"

  • A mom post today.... We were driving to the zoo on Sunday morning and Jess turned to me "Do you know what today is?  It's today." Such simple words but ones with so much meaning between the two of us - it's almost like a secret language.  "Today" was the day that we almost lost Lily; the day that our lives stopped i[...]
  • Can You See the Difference?

  • Guys, do you remember what you were doing one year ago today? Because I do...well, kind of.  At this time, one whole year ago, I was actually pretty out of it because I had just come out of my second open heart surgery.  You see, when I was born there were some big time problems with my heart - I had something called a[...]
  • By The Numbers

  • 98582827495: the number of people in line at the Starbucks at Sick Kids today. 189: the number of days before I need to see my cardiologist again. 99: the highest my oxygen saturation levels were at today (does anyone else remember when we were happy when it was 77?) 30: the number of seconds it takes for the tech[...]