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 for …
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 …
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 …
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 …
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 …
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 personality change we have seen in the last 24 hours is remarkable. Lily has always been a happy, content baby but now she’s smiling all of the time, she let me brush her hair (getting all of the tangles out) and put in the pigtails without a peep and even let the nurse and I do her dressing change (which normally causes a total breakdown) without a single tear. Between stretching out her vein and getting rid of the Ng tube, it feels like we’re bringing home an entirely new kid. She’s amazing.