Crazy Comparison

Over the past few days, we've had a number of discussions with doctors regarding Madeleine's medical conditions and her long-term outlook. We haven't learned anything new: we know that Madeleine has some serious medical issues to address-- most notably her pulmonary hypertension-- and we have reason to believe that if she grows and develops, these medical issues will be resolved. However, the conversations have underscored just how fragile Madeleine is and re-emphasizes how lucky we are and how careful we have to be in the future when we bring Madeleine home. We're obviously elated that Madeleine is doing so well but its a difficult reality to accept.

The title "crazy comparison" comes from the fact that I spent much of the day holding Madeleine while talking with doctors and then reflecting on these various conversations. By the time Kirsten showed up yesterday evening at HSC, I was really focused on thinking through all of the various medical challenges when I handed Madeleine over to her mom. I continued reflecting as Kirsten began playing with Madeleine when I was suddenly jarred out of my thoughts as I watched Kirsten bounce Madeleine up and down. I was shocked to see my daughter-- the same daughter that I'd held all day and fretted over-- was nearly squealing in joy with her mouth wide open in a smile and her hand shoved into her mouth (Madeleine was in prime hand sucking mode yesterday-- its her version of a pacifier...) Kirsten was smiling as she bounced Madeleine up and down on her lap and then swung her from side to side. I've been so busy working on our kitchen that I haven't spent much time at the hospital the last few weeks and I learned that this is a new routine that Kirsten and Madeleine have developed together-- they both looked like they were having a great time.

The scene was extremely moving for me as it has been quite some time since I've seen my daughter and wife both this happy. I guess I'm writing this out right now as Kirsten and I are preparing to bring Madeleine home in the near-term (possibly next week but we're not getting our hopes up.) On the one hand, we will serve as Madeleine's primary health care providers and must be vigilant to ensure that Madeleine's health challenges are addressed. On the other hand, we simply want to be parents. I want to walk in from work, throuw my briefcase in a corner, rip off my tie, and play with my daughter without letting her health issues complicate our play-time. Obviously, we can play both roles--- its just a complicated situation that we'll need to learn all over again.

That's all for now. Madeleine continues to do well at HSC. As we reported yesterday, the goal is to get to 7 consecutive days with no medical interventions needed. For those keeping score at home, today is day 3 unless something changes. I've already promised everyone that "Charlie Brown isn't lining up to kick the football again" so I'm not putting in writing a date for discharge until I'm buckling Madeleine into her car seat.

Have a great weekend-- Kirsten and I will do our best to take pictures and get them posted soon.