Tags archives: Organ Donation

  • 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[...]
  • What is Lily Looking For?

  • She's looking for number 100! 100 what, you may ask yourself? A while ago, we asked the people we love to take a few minutes out of their lives to register to become organ donors.  Originally we set our goal at getting 25 people to register.  We reached that goal and then decided to double it.  Before I knew it, ou[...]
  • Tomorrow and Tomorrow and Tomorrow

  • Today I was, once again, reminded that life can sometimes throw you incredible curves and that within mere moments everything can change.  While I'm at home tonight feeling very grateful that our scariest moments with Lily ended happily, my heart is with other people and hoping that, for them, tomorrow is a better day.[...]
  • 60% is a Passing Grade

  • That's a pretty amazing number.  It wasn't some big amazing goal to start with, but we're at 60% and I'm proud and grateful! So please keep sharing this page, please keep telling people you know....because think about the difference that 50 people will make.... 1. For each donor, up to 8 people's lives can be saved [...]
  • 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[...]