Brianna Gives Hope: New Eyes

Sunday, August 24, 2008

New Eyes

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SUNDAY, AUGUST 24, 2008 09:08 PM, CDT
Oh my goodness. I can't wait to post some new pictures of the Bre-ster with her "new" eyes. Amazing. She is staring at EVERYTHING like it is the first time she has seen it. Actually, I have to be honest, after seeing her reaction I crossed my eyes and looked around. Heck, that is all it took for me to realize what she is amazed at. And, as you have read in the past where I have written about how happy she is. Even now, when we were told that her eyes would feel like there is sand in them and she would be trying to scratch them. You wouldn't think it by seeing her. She is her usual happy smiley self. God bless this baby girl. Pictures soon...I promise.

FRIDAY, AUGUST 22, 2008 07:47 PM, CDT
Hello everyone. Well, we had a long day at the hospital today. Brianna was scheduled to be at an out-patient facility for her eye surgery (to straighten out her cross-eyes) this morning at 8:30. For those of you who don't know where we live, well, we are here smack dab in the middle of Fay-land (hurricane-speaking). It has been raining non-stop for DAYS. Anyway, we made it to our appointment only to be told by the anesthesiologist (sp?) that she was concerned about performing the surgery at an out-patient facility due to Bri's Trisomy 18 diagnosis and that they would prefer that it be performed at a hospital just in case she ended up needing special care. Lucky for us they were able to squeeze us in at the hospital so....we now have a gorgeous non-crossed eyed little girl. Me, Jerry and Ashley all have to admit though, we miss Brianna's little trademark eyes...they were so darn cute!!!!
She went through the surgery just fine. Waking up from the anesthesia was the time-consuming part. It took her forever. I don't think the doctors were overly worried, although they were concerned because it took her awhile to finally wake up. We are now home and she is, as usual, such a trooper. Oh, how we love this girl!!! Will post pictures soon. I promise. Have to, she is so darn cute!!! (Am I a proud mom or what?!)
Thanks for tuning in.

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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, August 24, 2008

New Eyes

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Our Family, Nov 2007

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