Brianna Gives Hope: Video Says it All

Sunday, May 4, 2008

Video Says it All

SUNDAY, MAY 04, 2008 10:05 AM, CDT
Hello there. I've added two new photos that you might want to check out. Didn't add any birthday pics because if you went to YouTube and saw her video, it says it all.
Last week we stopped by my former place of employment and the response was very heartwarming. Thank you. Bri didn't dissapoint because she put on her gorgeous smile with her one tooth showing. Oh, did I forget to tell you that her first tooth popped through on her first birthday? It is so itty bitty (just like her) but oh, so cute. It's now in far enough that when she smiles it shows. So cute! She has three more that are working there way in as well.
Brianna is working so hard on her neck muscles. Babies with T18 have weak upper bodies hence it is not unusual for them to never crawl. But our Brianna is trying so hard. She gets her little feet up under her and her arms under her and she just pushs and pushs and pushs. We think she will get there. It's just a matter of time.
Need to go now. Wishing you a great day.

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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

Sunday, May 4, 2008

Video Says it All

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Our Family, Nov 2007

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