Brianna Gives Hope: Not Going Home Today

Friday, April 10, 2009

Not Going Home Today

Just a short note to say Bri is not going home today. Throwing up again and not tolerating her feeds. They are putting in an iv as I type or trying to put one it. Her veins are so small it takes someone really, really good and lucky. They have tried both feet, both hands, her neck and her head. Gave up and called in someone else to try. Last resort is a central line in her groin. Will see. Right now I think we will be here until Sunday. That is ok. God has a plan and if that's it then that's it.

Jerry is staying tonight with Bri and I plan on going home and getting some sleep, if I can sleep.

Wanted to attach this silly pic taken by Jerry with his phone. She got the glasses in an Easter Basket today. Crissy looks pretty fancy in her red glasses (BabyBeBlessedDolls.com) too.

2 comments:

CathyApril 10, 2009 at 10:21 PM
Well I am sorry she is still in the hospital but so glad she is being watched. Praying for the IV. they are such a hard stick! Jerry, I hope you get some rest and Brenda I am praying that when you get home you can relax and rest. Give Brianna a sweet hug from Annabel.
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Yin MayApril 11, 2009 at 3:32 AM
know how hard it is to see her getting poked all over...pray for Brianna to be strong and for them to find a vein without going to the central line.
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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

Friday, April 10, 2009

Not Going Home Today

2 comments:

Our Family, Nov 2007

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