Friday, May 7, 2010

The Start

This is called Journey of Faith for a reason. I am currently 24 weeks pregnant and got a bad report. We are having a girl. When we found out we are having a girl we were going to name her Beth. After all this testing we had endured we decided to change her name to Faith. Faith means "Belief" and "Confidence". At that time we thought we were only dealing with Ventricular Septal Defect. Two days later after finding out even more heartbreaking news.

December 2009:

Great news! Will and I found out our precious child is on the way. A week before Christmas. Now that is a Christmas present. We were so happy. You know the "rule", "Shhhhh.... to wait for the first 3 months.". It was totally thrown out the window. I have known a few people who have suffered miscarriages at 4th and 5th month of their pregnancy. I couldn't contain myself.

February 2010:

I went for my 12 week ultrasound. I got a call from the doctor shortly after. The nuchel translucency was 6mm. At 12 weeks of pregnancy it should only be 3mm. An increased nuchel translucency is a possible sign of Down Syndrome. We could live with that. Those children are special and I melt every time I see them. I cannot help but smile.

March 2010:

I went for an Amniocentisis to find out exactley what is wrong. If you can avoid one of those, go for it. It hurt when that needle went in. When we got the results we were so happy. Chromosone count was normal, and it is a girl!

April 2010:

I was sent for a Fetal EKG. They were checking the heart cause with a high nuchel translucency result also could be heart condition. We learned that day her left ventrical was smaller than the right. The blood was flowing to the right side but not the left. That is fixable by surgery. A couple days later, I went for my 20 week ultrasound. They noticed that her limbs and rib cage are smaller than what it should be. It was a sign of dwarfism. That I can handle. The form that they were talking is called Thanatophoric Dysplasia. Which is fatal. They saved some amnio fluid from my amniocentsis and sent it off for further testing.

May 2010:

We got the offical results. Faith has been diagnosed with Thanatophoric Dysplasia. We are totally devasted by this news. We were sent to Mt. Sinai hospital for a second opinion. They also confirmed that is what she has and there is no hope for survival after she is born.

What is Thantophoric Dysplasia?

It is a fatal form of dwarfism. The rib cage and chest is too small and the lungs cannot develop and she cannot breathe on her own. She would require a breathing tube to help her breathe.

We have been advised to terminate but we won't. I don't believe in, and I refuse to play God. Will and I have placed Faith in God's hands and if chooses for her to live great! If not that is his choice. This is a difficult journey to be on.

We are relying on God for a miracle. I also accept His decision for Faith's life no matter what.

This is my blog, my journey of Faith. Hope this offers hope and healing to someone going through the same thing as I am.


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