Brianna Gives Hope: 2011

Wednesday, August 31, 2011

Caleb, Sweet Caleb

I go through the day with a weak smile on my face. Sweet baby boy Caleb has been touched by the realities of Trisomy 18 and died. Such a harsh word...but I learned that it is one of those words that holds reality, true life, finality. Caleb was here 29 amazing months, so was Brianna. Caleb's death was caused by pulmonary hypertention, so was Brianna's....Caleb gave hope to so many people with babies born with Trisomy 18....so did Brianna.

The pain never goes away, it just softens a little bit with time. God was so good to have shared Caleb, Jeannette, Steven and Caleb's family with all of us, may he continue to bless them during this very difficult time.

Wednesday, August 24, 2011

Brianna, Brianna, Brianna

I can see the date on my calendar and my heart breaks. Sept. 3rd will be two years since I kissed your sweet face. It feels like you have been gone for longer than that. Oh how I miss your morning snuggles. Love and miss you so very much baby girl. Forever in my heart.

Tuesday, April 12, 2011

Happy Birthday Sweet Bri

What of my favorite pictures...

Today you turn 4 years old....and I can only imagine the birthday party you are having in heaven. How difficult this path of grief is to follow. Right now your daddy is in the Dominican Republic on his second (men's) mission trip. Your sister is in Fort Worth, Texas living with her brother, wife and little girl, who is 15 months old, and helping her heal her broken heart. My plans are to go on a mission trip later this summer to visit several orphanages. The message sent to us through you from Christ continues to change our lives for the better. Oh how we miss your silly, happy smile and morning snuggly hugs.

Here are some pics from Bri's short life here with us. Many of them make me smile with such happiness. As I have said at least a hundred times, she was the happiest child I have ever known.

Me and my Daddy in Chicago

My Favorite Chair

Bri's visit with Annabel

Halloween....Chicken Little

Reading with my Sissy

Bri Loved being outside in her swing.

Getting Lots of Love..It was Her 2nd Birthday With Us

Ashley babysitting (!!) in Chicago...Isn't it the cutest!

Chillin' With My Dad

Bri was always a determined little girl...out to prove that T-18 babies CAN learn and deserve a chance just like every other child on this earth.

"Death leaves a heartache that no one can heal.
Loves leaves a memory that no one can steal."

Forever in our hearts.

Friday, April 1, 2011

Thinking of you Bri

It's almost your birthday....I bet Ms Debbie will be throwing a big one for you in heaven. Miss you sweet baby girl.

Ma Ma

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