Baby K did not have a great day and her parents had an even worse day than she did. It was not so long ago that we were sitting and watching the numbers praying for them to change or to stay and seeing settings go up and go down. It is torture. We are really lucky - our journey has not been nearly as trying or as challenging as it could have been. There is no denying that there have been ups and downs, but it could be far worse.
There are so many CDH families who have are who are currently fighting a tougher battle than we have had. There was a baby girl - Addison - at another hospital who lost her battle yesterday and "chose wings over feet". I cannot imagine the pain that mother must have felt to take her baby girl in her arms for probably the first time ever knowing that in just moments her life would slip away from her. That is a pain no one should ever have to feel and it hurts me to just think about it. I never thought it would be possible to feel such strong emotions for people I have never met, but so many of you were strangers before we started this journey and have helped us so much along the way. It is amazing how such horrible experiences can bring people so close. We are praying tonight for all CDH families and everyone who supports them and in thanks for being blessed with Charlie and all his special ways.