Tuesday, September 11, 2012

Birthday approaching....

So many emotions, so many tears and still so many fears. My sweet baby girl is about to turn ONE in two days. Here are a few facts....

  • Congenital Heart Defects are the #1 birth defect worldwide
  • Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
  • Each year worldwide 100,000 babies (under one year old) will not live to celebrate their FIRST birthday
  • Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their FIRST birthday
 So as you read that and take that in. Understand  this is what we( as heart moms ) FEAR EVERYDAY this is what we LIVE for every day as well. We go to sleep each night not knowing if our babies will wake up the next morning. Hoping and praying we are blessed with another day with our babies.  One year ago today I was not sure  what my future held as Ella was just about to be born , would she live or die would she survive her first open hear surgery??...  today I still don't know. But TODAY I do know she is still here, she is living life, thriving and beating the odds!!!  My daughter does have a uncertain life expectancy, but that does not change how any of us feel about our heart babies. We choose to live life to the fullest, we choose to give them every chance in the world to live a "normal" life,  a full life! These babies WILL surprise you all, they are FIGHTERS they are WARRIORS! The have shocked us all! Anyone that ever tells you these babies have no "quality of life" are full of SHIT!  sorry ;) but its true. Ella May is AMAZING and doing much more than I had ever expected even a heart healthy baby could do!  She is a miracle, she is our miracle. 
     That being said, there is still not a night that goes by that I don't fear my daughter may not wake up. Infact nighttime's in general scare me still . I hate to be alone. I cry a lot . My mind still goes to bad places. I very rarely relax at night, I have not slept in quite some time... but every bit of it it 100 percent worth it!! So THIS is ALL why this 1st birthday is SOOOO huge for us!! This is a day we were never sure would come! But how lucky are we?!?!? how Blessed are WE!??! She is still here, she is still thriving, she beating ALL odds and we are so than full to all of you for being apart of this journey with us!! Here is too MANY MANY more years with our miracle! THANK you ALL from the bottom of our 2 1/2 hearts!!  I have a feeling this blog will continue a lot thought the next few days... my emotions are running crazy!!  Thank you to all our supporters for everything!! <3 The Beckstead Three!! <3