Brianna Gives Hope: Still With Us

Thursday, September 3, 2009

Still With Us

Bri is still with us. We are all wiped out. Last night was so bad that we were praying for Jesus to take her in his arms. There was no comforting her, even with medication. But once again our God showed mercy and opened up a room at the Hospice House (less than 5 miles down the road) and we were welcomed into the facility after midnight. This is a hotel-type facility complete with nurses and doctors who are here to offer comfort care not only to Brianna but to us as well. Everyone has been so kind. Bri is sleeping right now, so is Ashley. Jerry ran home to take care of our sweet puppy dog Belina and I am sitting in Bri's bed at the foot just watching her sleep peacefully.

5 comments:

UnknownSeptember 3, 2009 at 9:41 AM
Thanking God for His mercies...praying for His continued care over Brianna and you all.
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KrystalSeptember 3, 2009 at 10:48 AM
My heart is breaking for you. I am beseeching God now for further grace, strength, and comfort for all of you today and especially peace and comfort for Brianna.
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KathrynSeptember 3, 2009 at 12:01 PM
Dearest Brenda,

I am praying for comfort for your family and Brianna. My heart is breaking for you. I am happy to hear that you are in the Hospice House, those people, in my opinion, are ANGELS on earth. I know that no words will comfort you and the tug-of-war of emotions from, Lord please take her now and end her suffering to, Lord please give her more time, are exhausting. I have never experienced a deeper more numbing ache than having to let my daughter go, and for me there was no comfort. So I will keep praying, that somehow you will find some peace and comfort in the small stillness that surrounds Brianna and your family. You have inspired many, including myself, your writing is so honest and expressive. Thank you endlessly for sharing your beautiful daughter and her story. I know my life is forever changed.
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CathySeptember 3, 2009 at 12:33 PM
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CathySeptember 3, 2009 at 12:39 PM
I cannot begin to say I understand what you are going through. The picture of you sitting on the foot of her bed just watching her bring me to tears. Praying for you, Brianna, Ashley and Jerry as you sit, wait in a place you had hoped you'd never be. I am praying that when God calls her to her Heavenly home, it is quick, painless and peaceful. But for me, I am selfish and I want more time for Brianna here on Earth. Love to you dear friend.
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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

Thursday, September 3, 2009

Still With Us

5 comments:

Our Family, Nov 2007

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