Brianna Gives Hope: Good Morning

Sunday, July 26, 2009

Good Morning

We hope to be discharged today. Brianna has not had any breathing issues since our stay although her oxygen saturation level tends to be in the low 90's. This morning the OS alarm has been going off because it has been fluctuating between 86 and 93. Yesterday she had an EEG (the first) to check her brain waves and to see if the breathing issues are being caused by seizures. No report back yet on that one. They also performed another EKG and it appeared the same as the one that was performed in Florida Hospital two weeks ago.

I posted a new video yesterday of Brianna taken by Jerry on his iPhone on our YouTube channel, BSBotts. As usual Brianna has been happy-go-lucky the entire time.

Thank you to Grandmother, Aunt Sonya and Uncle Joe, Aunt Judy and Uncle Paul for coming to visit little Bri while in the hospital.

I haven't been crying as much, the good Lord has reassured me that she is in his hands, the best care of all.

Thank you God for one more day.

1 comment:

CathyJuly 26, 2009 at 1:05 PM
I am so happy that you may go home but so concerned that you have no more information than when you arrived. Wow, you have to be on pins and needles,constantly. Praying, Brenda that answers and peace will come. When you get out will you head back home.
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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, July 26, 2009

Good Morning

1 comment:

Our Family, Nov 2007

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