22.2.13

VISITING LAUREN'S HOME AWAY FROM HOME

On Wednesday we packed Lauren up and headed to Children's to drop off some cookies. I love the pick me up that cookies give and I figure that doctors and nurses can always use a pick me up they work such long shifts and there are so many constant demands on them. Honestly, I don't know how they do it!



I love bringing Lauren to visit the ICU because it is exciting both for me and for the staff (and I get to dress her up). I like to show off how well she is doing and they like to see it. From what I gather, the staff had a hard summer with some children who didn't make it and then Lauren showed up. For awhile it looked like she may also fall into that same category but then she defied it all and miracles happened. Today ECMO baby / our ALCAPA / Lauren showed the staff how she can walk assisted through the ICU. She did lots of happy screaming (which was not good in that setting but brought smiles to the faces of some of the parents in there knowing that she was a success story of that very place) and lots of smiling at anyone and everyone.

Visiting was also wonderful because Lauren's cardiac surgeon, Dr. Campbell, was there and I was able to chat with him about the findings of Lauren's last appointment. He is so wonderful. Without hesitating, Dr. Campbell opened up her latest echo on the computer and called up her file to find out what the cardiologists had discovered. I will be honest - every time that Lauren doesn't want to eat or sleep, I feel tightening anxiety in my chest wondering if it is heart related. Thinking that everything at her last appointment would be wonderful and then being hit with a complication was not what I expected at all. So now I question everything. Dr. Campbell helped to put my mind at ease. He didn't tell me that the complication is not there but he let me know that it wouldn't be like last time when there was a narrowing and then her heart stopped in the CT Scan. Apparently, with patches on the heart, sometimes when the heart grows, the patch doesn't grow with it so it ends up creating a spot of tension that pulls. Correcting this does mean another surgery but we are not for sure there. We may get there but I appreciate the clarification that he gave me that this would not suddenly compromise her life.



What a crazy thing to have to worry about. It is a sobering thought but it has totally changed how I look at my life and how I can appreciate so many things that I never appreciated before. Even when things get tough, they could always be harder and living with this belief makes me so much more thankful for everything.

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