Along For the Ride...with Ryder's Heart

Saturday, March 8, 2014

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Happy Birthday to Ryder James!

Happy Birthday to Ryder James!
February 28, 2012

Ryder's Heart Story

Ryder James was diagnosed with HLHS at his 20 week ultrasound. He was found to have IAS (intact atrial septum) at his first fetal ECHO. He traveled to Boston Children's hospital and at 24 weeks underwent a fetal atrial septostomy. Though his atrial septal stent dislodged, a balloon septostomy created the desired opening in the atrial septum. He was born at 40 weeks at Children's Mercy Hospital in Kansas City where he had his Norwood surgery at age 1 week. He was a fighter, and survived ECMO, renal failure, a CNS hemorrhage, several clots, endocarditis, and worst of all, tummy time. He sailed through his Glenn surgery and then a g-tube placement to get ready to come home but got a cold and developed more respiratory issues. Then he had a chylothorax. While we prayed for him to come home for Christmas, he was taken "home" to heaven on November 30, 2012.



Our Beautiful Little Princess

Our Beautiful Little Princess
Adelyn Rae
"For you formed my inward parts; You wove me in my mother's womb. I will give thanks to you for I am fearfully and wonderfully made; Wonderful are your works, And my soul knows it very well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be."

-Psalm 139:13-16

Congenital Heart Disease

*The incidence of moderate-severe congenital heart disease is 6/1000 babies born.

*The incidence of Hypoplastic left heart is about 2/10,000 babies.

*6% of these babies will have an intact or highly restrictive atrial septum.



Links

  • CHOP - What is Hypoplastic Left Heart Syndrome (HLHS)?
  • More on what is HLHS?
  • Boston Children's Fetal Cardiology Program
  • Emedicine - HLHS
  • Little Hearts
Without faith a man can do nothing; with it all things are possible.
- Sir William Osler

Half of An Angel's Heart

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work." But the little angel is still a little scared. He asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help out, and you will be fine."

Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh every day. When its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

--Author Unknown



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Our little warrior

About Us

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The Newmans
Ross, Jessica and Addy live in KC, MO and Addy's baby brother Ryder (HLHS/IAS) became heaven's sweetest angel November 30th, 2012 after an amazing 9 months and 2 days here on Earth.
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Heart Stories

  • Hope for Baby Bennett
    Life on the Struggle Bus
    2 months ago
  • Ella's Journey
    A Golden Birthday
    5 years ago
  • Hope for Emma's Heart
    Quick Recap
    7 years ago
  • The Lihn Family
    The Normal Life
    9 years ago
  • Aly Jean's Special Heart
    5 years!!
    10 years ago
  • Jacob's Journey
    New Year... New Updates!
    10 years ago
  • Baby Abby's Heart-Our Journey with HLHS
    Happy Heart Day - 3 Years since her last surgery
    12 years ago
  • ..Life With Zoe..
    8 Months Old!
    13 years ago
  • Bowen's Heart

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"The road of life twists and turns and no two directions are ever the same. Yet our lessons come from the journey, not the destination."
- Don Williams, Jr.

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