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.

Thursday, October 1, 2009

We Need a Miracle

I have quite literally had years to think about how we would announce this to all of our friends and family, but it never occurred to me it would be this way. So...you guessed it.

WE'RE PREGNANT!

We were ready to begin fertility treatments in the fall and it turned out that our "vacation insemination" aka trip to Europe worked. You can only imagine how thrilled we were after trying for so long. We thought our only hurdle would be hearing a heartbeat due to miscarrying in the past. We never even considered there might be other things to worry about.

As it turns out our baby has some abnormalities that are very concerning to the Doctors and us. It has too much fluid on the brain which isn't draining. Right now the specialist has said it is too early to know anything conclusively. In 3 weeks the baby's brain and skull will have developed enough to have a better picture of exactly what's going on. However if the fluid does not drain, this could be very detrimental to the development of the baby's brain and spinal cord.

We are very hopeful with the Doctors reassurance that this may still rectify itself and the fluid may drain. This is probably really bad but if not, our house came with a great wheel chair ramp. Sorry, we really have to keep a sense of humor about some of this.We are just asking people to pray on behalf of our baby, that the fluid will drain and that the baby can have the best quality of life possible. On the 10th of October we will be fasting for our baby's health and would really appreciate it if you could join us.

Thank you again. We are so blessed to have friends and family we can count on when we need them.