Brianna Gives Hope: Ahhhhh.....help is on the way.

Thursday, August 20, 2009

Ahhhhh.....help is on the way.

Oh, I am so looking forward to tomorrow, or should I say later today since it is 1:27 am. Why am I still awake? Because Bri is and she threw up not to long ago so I want to make sure she is asleep before I crash. Anyway, back to later today....I have TWO, yes TWO volunteers coming to watch Brianna. One is a volunteer from our church, Cassie is her name. She has pediatric nursing experience and is going back to school for her masters degree. The other volunteer is from Hospice, she is also a nurse or actually a retired nurse. Either way, I'll take both of them. It was coincidence that they both were available only on Thursday this week but heck, I didn't want to miss the opportunity. What will I do with my time? Hmmmm.......will let you know later.

6 comments:

KathrynAugust 20, 2009 at 6:13 AM
Happy you will get a little break, I suggest some rest so you can recharge. Sometimes I would only just lay down and not sleep, but it was comforting to know that a professional was watching my baby. You deserve this!

Kathryn
ReplyDelete
Replies
CathyAugust 20, 2009 at 6:50 PM
Oh do tell, please. I hope you took lotzzz of Brenda time.
ReplyDelete
Replies
UnknownAugust 20, 2009 at 7:40 PM
I hope you do something fun and relaxing and don't spend the time sleeping like I would do because I still haven't caught up on my sleep! Have a good day!
ReplyDelete
Replies
Yin MayAugust 20, 2009 at 10:52 PM
great to have some respite doesn't it? time out is so important when caring for a child with special needs. Mommy needs to take care of her own special needs too!
ReplyDelete
Replies
JaniceAugust 21, 2009 at 3:07 PM
Thinking of you Brenda. Hope you had a relaxing day out.
ReplyDelete
Replies
UnknownAugust 22, 2009 at 12:00 AM
does the word SLEEP sound familar? Enjoy your break!!
ReplyDelete
Replies

Add comment

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 20, 2009

Ahhhhh.....help is on the way.

6 comments:

Our Family, Nov 2007

Blog Archive