Little's Life

Little's Life

Tuesday, September 3, 2013

Totally Emma

Since the tone of my last post was less than upbeat, I thought I'd switch gears with this one.  I can't think of a better topic to make everyone smile and cheer than one incredible little miss;
 Emma Wasson 




Emma is the daughter of an old high school friend of mine, Kenny, and his wife Jerilyn.  This may sound familiar to some of you, since I have talked about her and asked for prayers on her behalf before on Facebook.  For the folks who don't know much about her, I'll give a little background.

This is from her CaringBridge page (http://www.caringbridge.org/visit/emmawasson)

Emma Wasson was born Saturday, August 25 2012 at 4:12 a.m. She was induced at 38 weeks due to some heart rate decreases. Everything on ultrasound looked fine, but my doctor still had a "gut feeling" something was wrong. The doctor said it would probably lead to c-section because inductions at 0 cm dialated are not usually successful. Emma surprised us all! Mom went 0-10 cm dialated in less than 7 hours, pushed for an hour, and she was here! It was a stressful delivery because her heart rate kept dropping and it went so fast. She weighed 5 lbs 3 oz, 18 3/4 inches long, and had an apgar of 7.9. She appeared to be a healthy newborn. Two hours later while in the nursery getting her bath, she turned blue. They called in a pediatrician. The pediatrician said oxygen levels were not good and she heard a heart murmur. Emma was transferred to Arkansas Children's Hospital. Mom and Dad were released an hour later (6 hours after birth) to follow her. She was diagnosed with Pulmonary Atresia with Intact Ventricular Septum (PA-IVS). This particular type of heart defect is rare. This heart defect (present at birth) made her a candidate for a genetic disorder. Three weeks later she was diagnosed with Turner Syndrome, a genetic disorder affecting girls only due to a missing X sex chromosome. Only 1% of fetuses live to term with this genetic disorder. Only two people in medical journal history have had the above combination of disorders. Emma also had a coarctation of the aorta. This is rare because children usually do not live with disease on both sides of the heart. Emma developed chylous effusion soon after birth and the drainage tube caused a perforation in her bowel. This led to abdominal surgery. Emma has had 4 heart catheter procedures, one open heart surgery, and one abdominal surgery.

Emma's odds of survival were slim - very slim.  On more than one occasion, the Wassons had to make heart wrenching end of life care decisions.  But every time the doctors have said "There is nothing more we can do", Emma has dug her heels in and won.  She is one determined tot!  To everyone's amazement, Emma grew stronger, beat infections and pneumonia, her kidneys, lungs, and heart began to heal, she started tolerating her feeds, and fought her way not only off of the "palliative care" list, but out of the hospital completely after 254 consecutive days.  She has been home for 4 months now, with only a few short stays in the hospital since coming home! 

She (and her parents) has SO many people in her corner. Emma is a beautiful, miraculous proof of the power of prayer.  This defiant little girl refused to follow the path that so many others with complicated genetic disorders sadly must follow and just celebrated her very first birthday. 

 

I have been praying for this girl her whole life.  Something about her story and the way her mother pushes forward each and every day - even in the darkest of hours - with her faith in God and hope in her heart just absolutely struck a chord in me.  The way she writes about her journey is so real and raw and I am so grateful she has chosen to allow all of us into this world that she could have kept private.  I am so inspired by Jerilyn and Kenny and the way they have soldiered through this incredible roller coaster ride Emma has taken them on this past year.  They make me want to do better and be better for Andrew, whose medical care at the moment pales in comparison to Emma's. 


Emma's parents have asked that everyone who can, consider donating one of two Tiny Love Mobiles to Arkansas Children's Hospital CVICU in honor of Emma's 1st birthday.  There is a pink version and a green version.


Emma has the pink one and loves it.  It has been with her through every hospital stay.  You can find them for just over $20 at Target and I've even made it super easy for you, just click on a color for a direct link (pink or green).  They are also available at BabiesRUs, Albee Baby, Amazon, and Diapers.com.
You can have them shipped to the hospital at:
Arkansas Children's Hospital 
Attn: Volunteer Services
1 Children's Way, Slot 108 
Little Rock, AR 72202 
The hospital is excited to see how many will be donated!

I just wanted to publicly wish sweet Emma a very VERY  happy birthday and thank all of you who have also been praying for her and her parents.  Please don't stop!  The challenges for Emma, Kenny, and Jerilyn are not in the past.  Emma continues to keep her parents and doctors on their toes with her medical conditions.  But they've all learned to expect nothing less from their girl.

Please keep Emma and Andrew both in your thoughts on Thursday, as they both have cardiology appointments that day.  Prayers for good scans that show strong hearts for both of these precious babes!

*If you'd like to follow Emma on Facebook, her url is https://www.facebook.com/TotallyEmma and her CaringBridge link is toward the beginning of this post.  To learn more about Turner Syndrome, check out http://www.turnersyndrome.org/ and to learn more about Pulmonary Atresia, you can find information on it at http://www.mayoclinic.org/pulmonary-atresia/ .

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