I am learning

In the last few days Madden has made a few steps in the right direction. As of tonight one of his blood pressure medications is off, yay! There is the possibility that is goes back on...but for now a step forward. He has also had 3 of his 5 chest tubes removed, these are drains for all the fluid he is retaining. He is also opening both eyes again and is way less puffy. He is smiling a little, making eye contact again and is looking a little more like himself - he isnt the same shade of purple he once was. Madden also had a head ultrasound done today that was normal. Great news.

We have also had a few mis-steps in the last few days: Madden started throwing up and had blood in the vomit. He also had some blood in his stool. He had an episode the other day where he dropped his pressured really low and at the same time his heart rate dropped into the 90s. They had to turn his pacemaker back on briefly but that is now back off again (all kids that come back from open heart surgery are wired to an external pacemaker that drs can adjust). Nobody is quite sure what happened to cause this episode and we are choosing to just be happy it is behind us.

One of the doctors had a conversation with Rocky today and was very happy with where Madden is currently because of the progress he has made. He also mentioned that a few days ago he was very worried about him and that he wasn't sure he would be here now. A few people have said that. The direction of this journey is in Madden's hands. At first that scared me. I didn't feel like he was big enough to have his life in his own little hands. But now I am comforted by the fact that he is fighting to be. This is what he wants and if it is truly up to him, this is what he will get.

I know a lot of people are feeling very sorry for us because we are going through something that no family should have to go through. I am also feeling a little jealous of families that have their baby and get to bring them home. I haven't yet picked up my own baby. I have only held him a number of times and each time nurses have to help move him into my arms because of all the lines. I am not complaining because holding him is a gift but I want the challenging part of holding him to disappear.

This experience, though extremely difficult has taught me so much. I beleive it has made me a stronger person. I am learning to appreciate the little things in life and am reminded daily what really matters. I have been shown love, compassion, friendship and sympathy by people I have never met before. I have learnt how strong my son is and know that he wants to be here. He is fighting to be a part of my family. He is fighting to be in my arsm....do you know how special that makes me feel. I am lucky. I have been given a gift, a very special gift. I have been blessed. I believe I will live my life differently, I will live my life better.

Madden you are a miracle. You are perfect. I love you as big as the sky. xo