Brianna Gives Hope: Sweet

Monday, November 2, 2009

Sweet

Just a sweet iphone video that should make you smile and perhaps cry. The red light is the O2 monitor on Bri's toe.

4 comments:

AnonymousNovember 2, 2009 at 10:13 AM
DEAR BRENDA,
WOW HOW ADDORABLE. I LOVE SEEING BRIANNAS BEAUTIFUL SMILE. YES IT DID MAKE ME CRY , BUT THAT IS OKAY. IT IS SO NICE TO HAVE THOSE MEMORIES CAUGHT ON VIDEO! I DO NOT KNOW WHAT I WOULD DO WITH OUT MY VIDEOS .
I WANT TELL YOU HOW MUCH I RELATE TO YOUR PREVIOUS POST ABOUT HOW DIFFERENT IT IS IN THE BEGINNING. I FEEL MY GRIEVING GOES UP AND DOWN LIKE WAVES. I REMEMBER HOW HAPPY I WAS WHEN I BROUGHT SHANE HOME FROM THE HOSPITAL. HOW MUCH JOY SHE BROUGHT TO MY LIFE. ALTHOUGH WORDS COULD NEVER DESCRIBE HOW MUCH I MISS HER, HOW MUCH I LONG TO HOLD HER.I FEEL LIKE I HAVE TO TRY TO BALANCE MY SADDNESS FOR MISSING SHANE WITH REMBERING THE JOY AND LOVE SHANE BROUGHT INTO MY LIFE. THEY SAY GREIVING IS HARD WORK AND THAT IS DEFINITELY TRUE. THEY SAY IT WILL GET EASIER.. I THINK IT IS SOMETHING YOU JUST LEARN TO LIVE WITH BY CHANNELING OUR GRIEF INTO POSITIVE ENERGY AND HONORING OUR BABYS MEMORIES.

STAY STRONG , MUCH LOVE TO YOU AND YOUR FAMILY,

MEGHAN SHANE
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KathyNovember 2, 2009 at 11:33 AM
Precious.
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Susan OloierNovember 2, 2009 at 1:36 PM
The video is so sweet, Brenda. Thank you for continuing to share Brianna with all of us.
Susan
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CathyNovember 2, 2009 at 2:56 PM
Oh my how I know you wish you could kiss each and every toe on those precious feet. Thank you Brenda for sharing with us. I love, love, love to come here and see a new post. Prayers to you and your family...
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Definition of Trisomy 18

Edwards Syndrome : Edwards Syndrome (Trisomy 18) is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where “the more the merrier” is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Sadly, this condition is considered "not compatible with life". Just like with Down's Syndrome (Trisomy 21), there is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Unfortunately because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down's Syndrome. Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Children who live can be an important part of their family and community, but are profoundly developmentally delayed.

But oh, how we love these special little babies. When Brianna was born we were told she would probably leave this earth within 24 hours...but look at her now. 24 months old, healthy, adorable and amazing. God has been so good. Brenda

Bri's Medical Condition

Brianna was full-term born on April 12, 2007, weighing 5 lb 18 oz and 18" long. Her Apgar scores at birth were 8 and 9. Approximately 15 hours after her birth we were advised of the tentative Trisomy 18 diagnosis.

Immediate health issues had to do with her heart: Mainly, a VSD (Ventricular Septal Defect); PDA (Patent Ductus Arteriosus) ; and a PFO.

Open Heart Surgery at 4 months and

G-tube placement before we came home.

Eye surgery in Spring of '08 to correct cross-eyes.

Tubes placed in ears in Fall of '08 hoping to quash the numerous ear infections.

Scan of abdominal section in Dec. '08. Everthing appears normal.

Brianna takes formula by g-tube but eats baby food by mouth. She can hear, see, is rolling over, sitting up, trying to crawl, playing with toys, says "da da"; "do it, do it, do it" and various other sounds. She is the happiest child we have ever known.

We are so very blessed.

Brianna Gives Hope

Monday, November 2, 2009

Sweet

4 comments:

Our Family, Nov 2007

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