Along For the Ride...with Ryder's Heart: We made it!

Tuesday, November 15, 2011

We made it!

We arrived safely in Boston and with the aid of our mad-mass transit navigating skills (iphone gps) managed to make it to our hotel via the MBTA!

Our first appt is at 8 am tomorrow (the fetal ECHO w/Dr. Tworetzky) - then apparently there is 4 or 5 more to follow...we will keep you updated on any new news.

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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.

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

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

Tuesday, November 15, 2011

We made it!

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