Brianna Gives Hope: All is Well...at the moment.

Thursday, August 27, 2009

All is Well...at the moment.

We all had a good night last night. Brianna's pulse oximeter didn't alarm not one time...yippee!!! We actually heard her playing with the sweet seahorse light up toy that her friend Maddie brought over to her earlier in the evening. It's the kind of thing that wakes you up from sleeping but ever so lightly and makes you smile with delight because your sweet baby is enjoying life. Thank you Kristen and Maddie for making that possible : ) Hubby is in bed, Grandmother is in Bri's room watching over her and I am waiting for all to go to sleep so I can go to sleep. Thank you to everyone for the many thoughts, prayers and food!!!! I have never been in this position and it feels kinda ackward but at the same time, feels so good not to have to think about meal planning, shopping and cooking. I have new pics but too tired to upload them now. Tomorrow I will attempt that. God has been so good to us. As for a prayer request, pray for no pain for sweet Brianna.

5 comments:

christinaAugust 28, 2009 at 12:05 AM
oh i am so all over that! My husband and I just carry you in our prayers all day and thoughts are consumed with you and bri! (p.s. yes, would love to be a link on your site!)

makes my heart so happy to hear you are getting these memories AND peace in the moments! I wish my words here could express the joy i have of seeing her sweet sweet face. I DO see my cana in there...it's blessing me all over the place! not even a "bittersweet" but full on joy! love it love it love it!

i just want to cover you in this, may you find rest tonight, may our Bri find peace and rest and sweet sweet dreams, free from pain, free from fear, with a heart full of the knowledge that she is so loved.

you guys are always in our thoughts.
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Yin MayAugust 28, 2009 at 1:43 AM
thankful for the good night Bri had. Great to hear you've got support around you right now.
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kimAugust 28, 2009 at 11:03 AM
I an sooo happy that Bri had a good night. You are always in our toughts and prayers. We aren't that far away if you need anything.

All our love
Kim, Katie, Justin and David
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lost--for--wordsAugust 28, 2009 at 2:35 PM
I wish that I lived closer so I could help you somehow. I so understand the difficulty of trying to balance everything... and most importantly, trying to push aside the things that don't urgently need to be done to allow you to enjoy quality time with your precious child.
So glad to hear that Brianna is going much better today. I know how hard it is to watch a child struggle, I wish nothing but comfort for your sweet girl.
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AnonymousAugust 28, 2009 at 10:17 PM
We are so happy Brianna is enjoying her gift! Maddie and I both enjoyed spending some time with you and Brianna the other night and I got some great video I will send you =)
Saying prayers sweet Bri has no pain tonight.

Love,
Kristin and Maddie
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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, August 27, 2009

All is Well...at the moment.

5 comments:

Our Family, Nov 2007

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