In July of 2008, Sam’s little sister joined him and us in rounding out our little family. Charlotte, aka “Moonpie,” brought us two surprises at her 20 week ultrasound – the first being that she was a girl, and the second that she would be taking us on a very new and unexpected journey.

Charlotte was diagnosed with Hypoplastic Left Heart Syndrome which required her to have one of three open-heart surgeries at three days old. Charlotte, much like her brother, has already shown a stubborn streak. She is our little fighter.

Charlotte’s timeline:
July 7, 2008, born at 38 weeks at Duke University Medical Center

July 10, 2008, Norwood procedure with the Sano shunt
-July 28, 2008, Charlotte was discharged from Duke
-September 27, 2008, officially weaned off the feeding (NG) tube
-February 12, 2009, heart catheterization at Duke
-March 12, 2009, Bi-directional Glenn procedure at Duke

-March 16, 2009, discharged from Duke
-July 7, 2009, Charlotte celebrated her first birthday

-July  7, 2010, Charlotte celebrated her second birthday

-February 25, 2011, heart catheterization at Duke.

-April 20, 2011,
Fontan procedure at Duke

April 28, 2011 discharged from Duke for the LAST TIME!

If you would like to know more about Charlotte’s condition, please feel free to email me at jtousey(at)gmail(dot)com.


7 thoughts on “Charlotte

  1. Hi there! I came across your blog and hope you don’t mind me following?? My daughter Kylie also has HLHS, Charlotte and Kylie a just a few months apart and are almost the same timeline. Kylie was born 9-2-08 had her glenn 1-13-09 and is most likely fontan ready this year some time. We go in a couple weeks for her sedated echo to see where she is at. You little girl is so beautiful!! :0)

  2. Hello! Thought I would comment as well. I have a son named Austin who has HLHS. He is nine monthes now and we are still in the beginning workings of this adventure. Your blogs have given us hope and excitement! Your family is precious. Thank you for sharing!

  3. I just found your site and wanted to say THANK YOU for all your links and advocacy for CHD.

    THis year we had a baby who was born with a severe heart defect and it has been a scary journey. I was told by the pediatric cardiologist NOT to google “heart defects” and spend hours on the internet reading about it. Although he was trying to protect me from worrying, I am JUST NOW realizing the heart community that exists out here.

    Thank you for being a part of that community!

  4. I came across your blog from another HLHS family blog. Your daughter is beautiful and looks like she’s doing very well :)I’m 26 yrs old and also have HLHS. I would love to communicate back and forth with you. Feel free to email/Facebook me at anytime. Looking forward to hearing from you soon!

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  6. Hello Jenn… you and your family are so beautiful. I loved meeting you and hearing your story about your Charlotte. I can’t imagine the journey God has you on….but I could plainly see how HE IS THERE for you. Hope to stay in touch. ;-D

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