Brianna Gives Hope: Our Sweet Angel Pie

Thursday, September 3, 2009

Our Sweet Angel Pie

Oh how life can change in the blink of an eye. I took this picture late yesterday afternoon.

Earlier today, resting comfortably at the Hospice House.

Please continue to pray for comfort for sweet baby Bri please.

8 comments:

ElySeptember 3, 2009 at 1:25 PM
Brenda, she's the sweetest thing ever.
ReplyDelete
Replies
lausSeptember 3, 2009 at 2:03 PM
Praying for you all ... wish there was more I could do. My heart aches for you ... xoxo

Laurie
ReplyDelete
Replies
LauraSeptember 3, 2009 at 2:49 PM
Prayers from Philadelphia are being sent your way to your whole family. God bless her heart.
ReplyDelete
Replies
CathySeptember 3, 2009 at 3:36 PM
Melts my heart, she looks so peaceful. Praying that she will have peace and comfort. Whisper sweet Angel kisses in her ears. Thank you for the updates. I can't wait to run my errand, run back by the house just to check for news. Showering you will continuous prayers...
ReplyDelete
Replies
AnonymousSeptember 3, 2009 at 3:51 PM
Aunt Brenda...we are praying for your comfort, since our cousin is in Gods loving arms now. Love from Panama City~
ReplyDelete
Replies
AnonymousSeptember 3, 2009 at 3:53 PM
What a beautiful girl with a big, sweet smile! I will be thinking of your family and praying for you during this difficult time.
ReplyDelete
Replies
AnonymousSeptember 3, 2009 at 3:56 PM
Would love to smother her with kisses, so please do so for John & me. Our prayers are being said for your whole family.
ReplyDelete
Replies
AnonymousSeptember 3, 2009 at 9:16 PM
I am so sorry for your loss. My best friend, Amy, was Brianna's hospice nurse. There is nothing I can say to ease your loss, but I have to say that your daughter was beautiful, and that I sit here in awe of your family's strength and capacity for love. My family prays for peace for yours, bless you.
ReplyDelete
Replies

Add comment

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

Our Sweet Angel Pie

8 comments:

Our Family, Nov 2007

Blog Archive