4/12/18 - 7 Weeks
Thursdays are always hard for my Mom and Dad. I get a week older on Thursdays. This Thursday I turn 7 weeks old. I can't believe I've already been in this world almost two months! What a journey I have been thru. I've nearly died three times and been saved three times by amazing people. I've been on and off of ECMO. Successfully off ECMO for now. Please pray I never have to go back onto that or a VAD before my heart gift comes and I have my transplant done. I need to stay just as I am now...stable-ish and strong-ish. I've been to three hospitals. The Sauk Prairie Hospital, UW Madison's American Family Children's Hospital and now am currently addmited at the Children's Hospital of Wisconsin. I have had a ventilator breathing for and with me my entire life so far. I have been on strong sedatives, paralytics and pain killers, heart medicines and diuretics, antibiotics and steroids. I've had IV's and PIC lines, EKG and EEG lines, catheters and temperature probes hanging off my body since the day I was born. My normal day consists of laying in my hospital bed until nurses come in to tend to me, sleeping, doing therapy and visiting with Mom and Dad. I can sit up with help. I can lay on my tummy and push myself up with my arms. I can move my head by myself now, too. I like to hold things in my hands and punch and kick the air. I wiggle around in my bed. I still love my mobile and am starting to see colours more clearly: red, green and yellow are my favorites so far and catch my attention. I like to listen to what's going on in my room and try to see where sounds come from. I like people reading to me. I think I recognize Mom and Dad a little more now. I am starting to grow and get stronger. I wonder how tall I will be? Will my eyes stay blue? Will I always like music? Do my toes do anything? What are fingers for? I want to explore! I am doing a lot of learning. I'm going to be very smart. Mom and Dad joke that my first word will be something like "echo-cardiogram" or "cardiomyopathy" instead of "Momma", "Dadda" or "spoon". I'm around so many smart people and fancy things all day...maybe I'll learn a bunch and be a cardiologist some day? That would be really kool!