Hope for Rori - A Heart for Aurora

The holidays are a time of celebration for many. Good food, lots of parties, gift giving, making memories with family and friends but not for my friends Jennifer & James. For the 2nd year in a row they are spending the holidays in the hospital while anxiously waiting for a new heart to save their daughters life. 

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On July 8th of last year the universe got a little sweeter when Aurora Hope Shane came into the world. Aurora, or Rori as we lovingly call her was not named after the Disney princess oh no, thats not good enough for OUR princess. The meaning behind this little warrior's name is from old English, hope of a new dawn.  A name fitting as she very much brought a new dawn for Jen & James. She made them parents. 

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Although we all knew Rori was special, shes SO special that she was born with only one pumping heart chamber, not the 4 she should have. From the day she was born she has been surrounded with tubes, nurses & Doctors. Aside from a brief stint at home she has lived her entire life in the hospital. 17 long months full of pokes, jabs, injections, feeding tubes, casts, central lines, strangers, painful procedures.. the list is endless but all very scary things not only for Rori but her newly made parents, family and friends. 
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The plan to save Rori was devised by her doctors both in Kentucky and California. When she was a little stronger she would travel to California for the first of 3 surgeries to repair her heart. Although she had been getting bigger it seemed like a constant battle to keep her stable and by mid March she was in decline. One evening her oxygen saturation delved extremely low and she was rushed to the hospital where after a seizure she was stabilized. The decision was made to fly her to California earlier than expected and she along with her parents arrived in Stanford March 24th to receive the first surgery. 
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At first the doctors said that the surgery had been a success but happiness was short lived when the next day she started a fever and went into heart block and coded for 45 minutes! She was stabilized, sedated and intubated while she went through an unplanned second surgery to install a pacemaker at only 8 months old! She remained sedated through early June and although she still had fevers she was flown back home to again get a little bigger and stronger in preparation for the 2nd surgery of the 3 needed to repair her heart.  
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Rori landed at the hospital back in Kentucky and immediately coded for 12 minutes. They stabilized her and started running tests to get a clearer idea of why she still had fevers and was still in decline. A CT scan revealed she had a brain bleed and was immediately sedated and intubated again to install drain tubes to relieve the pressure on her brain caused by the bleed. Again the feeling relief was short lived when the Doctors dropped another bomb that although she was put on a very high dose of medication in an attempt to regain function in her heart her last attack was so damaging it wasnt working and Rori would now need a full heart transplant. She has since declined rapidly.
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At 17 months old Aurora Hope has had her 1st birthday in a hospital and is about to have her 2nd Christmas in there too. She has been on the heart transplant list for over 200 days now. Despite all of this and with the help of her parents and hospital staff to help her get through every poke and procedure, she still smiles but she needs a heart NOW. 
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For 17 months her parents have virtually lived in the hospital with Rori. It has been a very tough time, suddenly having to rush months earlier than planned and spending 2 months away in California. Now back to Kentucky they are down to one income. Her mom Jennifer is with Rori in the hospital fulltime while her dad James works all day then drives the long 80 miles from work to the hospital every night to spend with his little family before going the 80 miles back to work the next morning. Its been a long up and down 17 months and when my friend asks me how much longer? When can she and James take her baby home and start their real life it kills me that I cant give her an answer. 
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 You can imagine how much the family expenses have expanded past the norm and continue to rise the longer she waits for a heart. Not to mention the hope that a heart can come at any minute and both parents are needed at the hospital, at each appointment or at home for an indeterminate period of time is very real.  Infant heart transplants and the fact Rori has been in the hospital for her whole life not allowed to roll over, learn to walk, eat or drink aside from a feeding tube, learn and play as other children her age do mean recovery isnt just the heart, its catching up on the entire life of learning & growing she has had to miss. This has been so stressful for Jennifer and James. They are physically, emotionally, financially & spiritually drained and I just want to try and give them one less thing to worry about. 
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Thank you so much for reading her story,

Follow Rori's journey on Facebook here. 

See a video of Rori's story here. 

Thank you to WAVE3 for posting about Rori. See the article here. 

Thank you to LEX18 for posting about Rori, see the article here. 


If you have not already considered organ donation please allow her story to inspire you. Say yes, sign the back of your license and let your friends and family know of your wishes to donate.

Kentucky Organ Donor Registry 

Kentucky Organ Donor Affiliates 
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Donations

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  • Christi Turner 
    • $25 
    • 16 mos
  • Anonymous 
    • $20 
    • 16 mos
  • Tia Gaston  
    • $25 
    • 18 mos
  • Adam Zientek 
    • $300 
    • 18 mos
  • Anonymous 
    • $900 
    • 18 mos
See all

Organizer

Kayte Shaw 
Organizer
Louisville, KY
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