Brianna Gives Hope: I can hear, I can hear

Thursday, December 4, 2008

I can hear, I can hear

THURSDAY, DECEMBER 04, 2008 09:09 PM, EST
Bri has been having such problems with her ears. When she was in the hospital in June, it took 4 days to figure out that the problem was fluid in her ears. Problem is that her ears are so tiny that the doctor can't see inside of them. Looking back, we believe she has had a chronic ear infection since April. One that antibiotics couldn't clear up 100%. So off to the Ear Nose and Throat Doc. Thank goodness for experienced doctors here in Orlando. We decided to attempt to have tubes placed in her ears for drainage. I say attempt because even the highly experienced doc wasn't sure if he would be able to place the tubes in her ears. The procedure day came and Praise be to God that yes, he was able to place the tubes in her ears. (That was about 6 weeks ago). The doctor said that she could probably hear 30 decibels higher. We noticed a change in her immediately. Interesting thing is that she used to be startled easily, now she's not. Hmmm.

1 comment:

Lacey FowlerMarch 21, 2022 at 11:43 PM
Great reading your blog poost
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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

Thursday, December 4, 2008

I can hear, I can hear

1 comment:

Our Family, Nov 2007

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