Saturday, October 24, 2009

Edward's Syndrome

Well we finally have something concrete to share, good news and bad news. Good news is:
IT'S A GIRL!
Bad news is our baby most likely has

We will know preliminary results from the amniocentesis by Tuesday and final results by Saturday. What we do know is our baby has increased hydrocephalus (fluid on the brain), a missing vessel cord, a deformed right wrist (which she may or may not have her hand or fingers), a clubbed right foot, suspected rocker-bottom left foot, and her nose is still on or near her forehead. That's actually just silly, that's not where your nose belongs. She does however have a strong heart beat and a healthy body weight- just like her parents.

Edward's syndrome has a very high fetal fatality rate. If she does make it to term it's most likely that she will be stillborn. And lastly if she does survive the birth, her life expectancy is a year or less, usually 15 days or less.
We are in the midst of testing, genetic counseling, and processing what all of this means. We have big decisions to make within the next few weeks. If we can ask you to continue to pray for our baby we would really appreciate it. Also, if you wouldn't mind praying for us we would be eternally grateful. We feel very confident that Heavenly Father will answer our prayers in regards to what we need to do.
We are of course devastated and yet we are still proud parents. We choose to believe that our daughter is so righteous that she just needed to come for her body. She's made it 17 weeks so our goal is just to be able to hold our daughter, preferablly in this life, but we can settle for the next. We somewhat feel like dead beat parents knowing that our Grandparents will be babysitting our child in the next life for a while until we get there, but all of our Grandparents are great people so we know she will be well cared for and loved.
Again, thank you for your prayers and concern. We are just going to lay low for a while until we get our feet under us. We'll blog again when we have a complete diagnosis. Until then please know we have absolute faith in our Heavenly Father's plan and feel peaceful knowing that we have been entrusted with such a special girl.

12 comments:

The Wyler Family said...

We will continue to pray for your sweet little family. I wish I lived closer and we could hangout. I miss you!

mckellebmassmemo said...

Thank you for updating, You are ALL still in our prayers. The girls put your names in the Vegas temple when they went there for baptisms last week.

ashley said...

k-dawg,
my heart goes out to you guys. thanks for having an amazing outlook on things and your little girl is so lucky, even if she has to wait a little while to hang with ya. lots of prayers coming your way.
love you.

janeen said...

we'll keep the prayers coming! If there's anythign I can do all the way from Utah, let me know!

Mrs. Mother said...

We lost our little girl last year at almost 21 weeks to Trisomy 18. I am so sorry you are going through this rough time. It was the hardest thing we've ever gone through. It almost seems like there are no good or right choices when it comes to this diagnosis. Please feel free to visit my diagnosis, and I'm going to follow your blog to find out about your diagnosis.

Another good place for info is www.trisomy18.org. It was a lifesaver for us when we were waiting on our diagnosis. Big hugs to you.

jude wolpert said...

our daughter has full trisomy 18 and is 12.5 years old! i have been in your place and just wanted to see if i can lend any support. email me at jfwolpert@gmail.com if you feel like it. when we got out amnio back in 1996 i locked my self in a room for 2 weeks.

Hollands said...

I know that you do not know us well. We love both of you a lot and always have since we have been here. Gavin has done nothing but talk of your baby and how he will be sure to love it a lot. He loves both of you but Travis "a little bit more". Know that our family is here for you to do whatever, even if it is just to hold your hand. We love you both and the kind and gently spririts that you have. I said to Herb on the way home that you both must be just as special as we thought as Heavenly Father has sent you a baby that needs just what she has gotten. all our love.

Grammy Van said...

Congratulations on your precious little one. We will continue to pray for the Lord's will to be done and for you both. You are an inspiration to us. If there is anything we can do, please let us know.

Jennelle said...

Kirsten I dont even have words. What a hard trial...for ALL of you to go through. Your outlook and faith amazes me. God has his reasons for things even if we can't understand them in this life. Probably not what you want to hear. I will continue to pray for you guys and your little girl. Love you!

Shannon said...

We will be praying for you guys!! It's good to hear that your little girl has a nice strong heartbeat and a healthy body weight. I read up a little bit on trisomy 18 and it seems like these factors combined with her being a girl are at least hopeful signs. As hard as it might be to think of positives in this, I'm glad you both know that you'll always have this little girl as a part of your family! We wish you the best!

Lee said...

Kirstin,
All of us will continue to pray for you, Travis, and your baby. I am at a loss for words right now. Please know how much you are loved!
sending a BIG BEAR HUG your way with love.
Aunt Lee

Kristine said...

Hey Travis and Kistin. Just wanted to let you know that we are still praying for you all and thinking of you. We love you guys.