Wednesday, August 14, 2013

Teaching doctors/ changing lives

58 hours and no SVT.  She is doing it. The medication is working.  Holding her, she is so happy.  She's not in pain anymore.  She smiles and coos and grasps on to my fingers.  My dad came to Salt Lake today for a few hours and got to hold Capri for the first time.  I am so glad he was able to come and be with her.  My dad makes everything better.  If he holds her maybe he will make her better too.

Dr. Good came with his class today to teach them about Capri.  They all got to listen to her heart and feel her liver.  They talked about what Ebstein's is and the different types of heart failure conditions.  We showed them her X-rays and talked about her odds of surviving.  It was a great feeling to help teach future doctors.  Before this happened I had 0 knowledge of anything medical.  Today though, as the professor was asking his students questions I knew all of the answers.  I have learned so much in this last month I feel like my brain is going to explode.  Watching all of the students faces inspired me.  You could see the eagerness in there eyes.  They were soaking in everything the teacher was saying.  Absorbing all that information.  Looking at them though, you could see the sadness they felt as they looked at Capri.  They know the odds.  They know the scientific side of things and the scary road we have ahead of us.  We know the odds she has already beaten though and the miracles we have witnessed.  We will never know how long we have with Capri.  It might be 2 months it might be 50 years.  Because we know this everyday is precious.  Every kiss, every hug, every touch.  I will never know when its the last so I hold on to each of them.  Leaving the hospital gets harder and harder everyday.  Every night I look at her crib and my heart aches because she's not in there.  She is alone in the hospital without her mom there to hold her.  We missed out on the first month of her life, and most likely the second.  By the time we get to bring her home she wont be a newborn anymore.  She needs to get better, this isn't fair.

This little girl has changed so many lives.  A blog that I started to just help me cope and get through day to day has been read by thousands of people.  When I logged on today it showed that we have had 76,000 views in just over a month.  This is amazing to me.  At walmart the other day I had a women come up to me and ask if I was Kendra, Capris mom.  She told me about her family and how she reads my blog everyday and how it has changed the way she interacts with her family.  My dad has told me several times that every single store, restaurant and business he goes into he has at least one person stop him to ask about Capri and our family.  A local LDS church in our town has mowed our lawn, cleaned our house and helped us pay our bills.  They are setting up a fundraiser around our town selling cupcakes to help raise money for a gas card to get us to and from the hospital.  My sister set up a donation page to help us with medical bills where we have had so many people contribute to our expenses.  I have never in my life been in a situation where I needed to accept charity.  It is not something that is easy.  I want to be able to fix everything myself but I cant here.  I cant make it all better.  Having so many people help lessen the burden of financial issues has been such a tremendous blessing.  This is something we will always be grateful for and as soon as we are in a more stable spot we will pay it forward.  We will help another family in need and help lessen there burden.  I can not wait until that day is here.