It's a bird! It's a plane! It's TinySuperhero Rebekah!!

Tuesday, July 30, 2013

It's a bird! It's a plane! It's TinySuperhero Rebekah!!

I can not even begin to formulate the words for the amount of love and admiration I have for my daughter Rebekah. From my pregnancy, to her first day on earth, to 6 weeks old when she was trached, to all her hospitalizations, and through each of her health challenges...there has never been any doubt that this little fighter was sent on earth to share a message of hope and faith. She has been a warrior through it all. There is no doubt in my mind that Rebekah is a Tiny Superhero! And we received her official TinySuperheroes cape to prove it!

Rebekah looked ready to take off and continue her official job changing hearts and proving she is more than an "incompatible with life" label!

From TinySuperheroes.com:

TinySuperheroes seeks to empower Extraordinary kids — one cape at a time. We donate capes to Extraordinary TinySuperheroes who exemplify strength and determination as they overcome illness or disability. Once these Extraordinary TinySuperheroes are comfortable in their new capes, we feature them on our blog, in hopes of giving them a voice, their illness or disability a face, and the world the opportunity to stretch.

What an amazing way to inspire others and bring a little hope and fun into the life of a child facing great challenges! A huge THANK YOU to Robyn for creating this program for all the TinySuperheroes out there! Please consider supporting their efforts!

I have to brag on Robyn for a moment about the quality of her capes too. It is obvious that love and care go into the making of each personalized cape! I was expecting just a little cape, but this one can make anyone fly! It was soft, and thick, and beautiful! Even the inside of the cape is designed.

It even came with a personalized message just for Rebekah!

I think Robyn deserves her own superhero cape for all of her efforts! For more information on Tiny Superheroes, please visit their website or Facebook page.

Rebekah has always been our hero, but now she can wear her official cape and show the world what we've known all along. Rebekah can also now be a TinySuperhero ambassador for Trisomy 18 Awareness! Yay!

Thank you TinySuperheroes for making a difference!

Rebekah Faith - Our TinySuperhero for Trisomy 18 Awareness!

3 comments:

Ms. KrissyJuly 30, 2013 at 2:58 PM
Love it!! That is precious!
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UnknownJuly 31, 2013 at 6:11 PM
Dear Susan, Super Rebekah, and all of your Super Sidekicks,

It is truly an honor to send you your TinySuperhero cape and have you on our TinySuperhero Squad. There is no doubt that everything your mom knows about you is true and we can feel it, even from afar! The world is lucky to have you, and we're even luckier to have you on our Squad!

We are proud of you and cannot wait to watch your journey!

Thank you for sharing it with us!

Love,
Robyn
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Pamela ParrishJuly 31, 2013 at 7:03 PM
She is a hero! Tiny Superherows ROCKS! Your daughter is a fighter and a hero... <3
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Trisomy 18 and Rebekah

Our life changed drastically in December 2008 when our baby girl, Rebekah, was diagnosed through amniocentesis around 20 weeks gestation as having ‘full’ Trisomy 18.

Trisomy 18 (T18) or Edwards Syndrome is a genetic disorder caused by the presence of an extra 18th chromosome. The syndrome has a very low rate of survival, and babies with T-18 typically have complex medication problems resulting from heart abnormalities, brain defects, kidney malformations, spinal cord defects, and other internal organ disorders. Cleft lips and palates are also more common in babies with trisomy 18. They may have hand and foot anomalies. Babies with trisomy 18 may have difficulty regulating their breathing and temperature. T-18 babies typically have severe mental deficiencies and tend to grow/mature at an extremely slow pace. They may also be unable to feed properly and often require G-tubes. Neurological defects cause many problems with these children – the brain simply ‘forgets’ to tell the heart to beat or the lungs to breathe and seizures are not uncommon. The body often just ‘gives out’ after a period of growth and progress.

Because of the large number of potential medical problems, babies with trisomy 18 are usually considered “medically fragile” and the medical community likes to use the phrase "Incompatible With Life". About 95% die in utero. Of liveborn infants, only 50% live to 2 months, and only 5–10% will survive their first year of life. The median life span is five to fifteen days. One percent of children born with this syndrome live to age ten, typically in cases of the less severe mosaic Edwards syndrome. Major causes of death include apnea and heart abnormalities. It is impossible to predict the exact prognosis of an Edwards Syndrome child. Because major medical interventions are routinely withheld from these children, it is difficult to determine what the survival rate or prognosis would be with aggressive medical treatment.

Our Rebekah Faith was born at 38 weeks by induction on 4/21/09, weighed 4lb 6oz, and was 17” long. After 7 days in NICU to establish feeding, address jaundice, and assess her health, she came home with us on an apnea monitor and with a N/G tube for feeding. She weighed 4lb 1oz. An oxygen monitor was then added to the entourage of medical accessories. At the 2 week mark, she was 1 ounce past her birth weight and appears to be doing well overall except for several bouts of bradycardia (low heart rate), and apnea (stop breathing) during each day that requires physical stimulation to reverse. Those episodes got worse, and she was admitted to the PICU at 6 weeks old. At about 7 weeks, it was determined that she had severe obstructive apnea and the easiest and most effective treatment would be a tracheostomy. She got a trach and g-tube, and we haven't looked back since!

Every day with Rebekah is a blessing from God. In utero, she was diagnosed with a VSD hole in the heart, only one kidney was ever seen, brain abnormalities, and she has two rocker-bottom feet with one twisted to the side from malformation of the bone. Once she was born, it was verified that her VSD had closed in her heart, and a renal ultrasound showed TWO kidneys (she has a horseshoe kidney)! She actually fed exceptionally well by bottle, another exception to most T-18 kids. But once she was trached, she was unable to suck as strong as she needed to keep feeding exclusively by mouth.

Our children adore their baby sister and she brings much joy and love to our household. We thank God for this precious child and the path we are on with her.

Rebekah Faith is 'Redefining Incompatible With Life' everyday!

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Tuesday, July 30, 2013

It's a bird! It's a plane! It's TinySuperhero Rebekah!!

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