Brianna Gives Hope: Still Not Well

Wednesday, March 18, 2009

Still Not Well

Two weeks later and still not well. I had to take Brianna back to the pediatrician today. She has been on breathing treatments twice a day but this morning she was wheezing so I took her back in. After a good listen to her chest, Dr. Chaban diagnosed that one lung is clear and the other not so...we are on a second round of antibiotics and more breathing treatments. I'm not worried, yet. I truly believe a lot of this is being caused by pollen and that this too shall pass. Brianna does not have a fever and she is happy as a lark...as usual. It still doesn't hurt to ask for extra prayers.

1 comment:

CathyMarch 19, 2009 at 12:14 AM
Praying her out of this...As you can tell by Annabel's last slide show she begins her days with breathing treatments. I am glad that Bri is happy as can be. I sent you an email so will hope to hear from you. Give her sweet hugs and kisses from Ananbel.
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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

Wednesday, March 18, 2009

Still Not Well

1 comment:

Our Family, Nov 2007

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