Tags archives: Surgery

  • 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[...]
  • No More Tears

  • Today was the first of the two eye surgeries that Lily needs to have done. We, mistakenly, thought that they were going to do both procedures at once but since that is not the plan we went ahead with the first one today - a simple tear duct probing. Lily, along with a ton of other kids, has had an issue of blocked tear[...]
  • Head and Shoulders...

  • I sometimes feel as though that as a whole, we need to look at our calendars and start thinking about adopting Rosh Hashanah as the new year for everyone.  I don't think that I'm alone in thinking that September always feels more like the new year than January does.  Be it the years of school starting, the fresh winds [...]
  • 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[...]
  • A Rare Face...

  • A mom post tonight.  They were able to pull the temporary Ng tube yesterday because our Lily is doing so well with her G-tube feeds.  It's a gorgeous face that's been lurking behind that tube.  A tube, that we're now seeing must have been far more irritating and uncomfortable then we had ever thought because the perso[...]
  • Lily - the (Ng) Tubeless Wonder!

  • I have had a really great week.  I was worried about saying that because it seems that I sometimes manage to jinx myself and say that things are going well and then something happens and then I'm stuck telling you about something crappy.  But so far this week is pretty good - I mean it is only Tuesday, but we take the [...]
  • Another Week End, Another Surgical Adventure Begins...

  • The general consensus seems to be that I look really really good for someone who has so many things wrong with me.  I've been eating like a champ this week and more importantly, eating like a champ from a bottle.  My OT Lisa, says that it's safe for me to try 3 meals a day from a bottle and at each of them I'm getting [...]