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Emily, 2005

Emily, born 2005

Our story starts when I was 20 weeks pregnant.  We were so excited to find out if we were having a boy or a girl, but it never crossed our minds that there would be a problem.  Then they told us that they saw something wrong with the baby's heart. At first we didn't know what to think. They didn't really tell us anything except that they wanted us to see a specialist the next day.  When we saw the specialist they told us there that she had Hypoplastic Left Heart Syndrome. We did some research on our own but nothing could quite prepare us for everything that we would be faced with.


When she was born she was immediately taken to Seattle Children's Hospital.  Emily had her first surgery, the Hybrid Norwood procedure when she was just three days old.  She did pretty well with that procedure but was in the hospital for five weeks. She had to come home with a NG feeding tube, which we didn't expect.  Then at about five months old she had her Glenn procedure which she didn't do so well as they expected. She had a hard time coming off the ventilator, but she just needed a little more time than they expected.  


She has always needed to do everything at her own pace.  Later at about ten months old she had to have a G-tube placed, then had it removed at about 14 months old.  Emily has been in physical therapy since about nine months old to help with her gross motor skills. At the age of three, she has been placed on oxygen because of her low saturation levels.  On May 28, 2008, she had the Fontan procedure and later had a pacemaker placed.    

Through everything so far that Emily has been through, she has been able to over come every obstacle with great stride.  We couldn't ask for a happier little girl and count our blessing every day for having her in our lives. We love her so much.

Story by Emily's mom, Amy - Washington 

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