Tags archives: PVS

  • Sick Kids Mom PTSD

  • We're back home and on the mend. It was a bit of a tough transistion, getting nursing care arranged for both at home and at school and so Lily was away from school longer than we had hoped, but she went back late last week and has been as happy as they come ever since. She's had some rough moments where she has to ride[...]
  • 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[...]
  • Million Dollar Day

  • There are absolutely no words to describe the day we had...but of course I'm going to try. Today was Lily's playground build - an incredible gift granted to her by the Million Dollar Smiles foundation and sponsored by the Bank of Montreal.  The volunteers were all in place by 9am this morning, and after a few wo[...]
  • 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[...]
  • The Many Adventures of February 26th and Beyond

  • This last month has been totally and completely unreal and I barely know where to begin.  I think it's easiest to start telling you all about the crazy day of February 26th and then I'll fill in the rest. I think I told you all in a different post that the people at Momma C's work were nice enough to name the tot po[...]
  • 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[...]