Brianna Gives Hope: A Day to Give Thanks

Sunday, August 30, 2009

A Day to Give Thanks

A day to give thanks because we are enjoying yet another day with our little miracle baby girl, our older daughter Ashley and Grandmother. Bri's first venture out in a week to church this morning and we enjoyed every minute of it. Oh, to look at Brianna is so deceiving. She presents so healthy and happy yet it is her heart and lungs that are giving out. Thank you a hundred times over to our spiritual family at FPCO. Your support has been life-saving, really.

Brenda

8 comments:

AnonymousAugust 30, 2009 at 8:36 PM
I am so glad to hear you all went to church this morning. We thought of you when on our way to church too. Brianna is amazing! Thank you Lord for another good day.

With Love,
The Hendricks family
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CathyAugust 30, 2009 at 8:44 PM
Brenda, Thank you for the call today. I got to talk to you and Michele (Rhyder's mom) all in one day. What a blessing. I am going to try to find a flight to come that way and just hang out. Promise not to overstay my welcome. What airport do I need to fly into??
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CharAugust 30, 2009 at 10:35 PM
Hi Brenda,
I'm still praying for sweet Brianna, you, and family.

Big Hugs!
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JessicaAugust 30, 2009 at 10:57 PM
Hi Brenda,
I found this site through the T18 grapevine. I wanted to let you know that I think of you ond your sweet girl often. You are doing good things with Brianna and have touched many lives. I will be praying peace and comfort for you and your family.
With Love,
Jessica
Mommy to Eva (T18, 4 del)
caringbridge.org/visit/clearfield
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UnknownAugust 30, 2009 at 11:26 PM
Brenda,

You don't know me. I've been following your blog by suggestion of Kelly from the trisomy listserv.

Thank you for sharing this deeply emotional time with us. I've been following your blog for a few weeks now, and tracking the changes in Brianna's health.

We are sending to you all the strength and prayers we can to help you through the coming days, weeks and months. I just wanted you to know that this stanger is touched by your family. And if that's all there is to this life, then you have succeeded.

Just remember how many times your baby has defied what her doctors said would happen...

Colleen, momma to Angel Rowan Margaret and her sweet baby sister, Laurel Eliza.
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SarahAugust 30, 2009 at 11:40 PM
Hi Brenda: This is Sarah, Rachaels mom. You all are always in my thoughts and prayers. Keep on trusting in God and keep your faith up. He continues to work miracles and wonders. Brianna is special an is Gods child he knows best! Thank God for strength!

Rachael is babaing now and is able to roll from side to side. She is able to sit up longer now.

Remain Blessed.....
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kimAugust 31, 2009 at 7:10 AM
You are always in our toughts and in our hearts. Give her a wild kiss from me.
All our love part of your Niceville family

Kim David Justin and Katie
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AnonymousAugust 31, 2009 at 10:47 AM
Brenda,
It was so good to see all of you at church yesterday and to meet your mom. I loved Brianna's sunflower outfit. She truly is a miracle and we are blessed to know her and her family. You're in our thoughts and prayers. Let us know if you need anything. We are close by.

Jan & David
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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 30, 2009

A Day to Give Thanks

8 comments:

Our Family, Nov 2007

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