Monday, June 15, 2009

My story

I am not much of a blogger, I am still learning. I wanted to share my story because I need to have some way of sharing my feelings and thoughts of what I am going through.

I am currently 18 weeks pregnant with my little Sami. I knew from the start it was going to be a baby girl. A few bad mornings but all in all a good pregnancy. I was asked if I wanted to take this new test offered to see if there are any chromosome abnormalities or any defects. It was simple, go draw blood, go get an ultrasound and another blood test a few weeks later. I was like OK, an extra sneak peek at our little one, why wouldn't I do it? Well now that I look back maybe I shouldn't have!!! At 12 weeks I had the ultrasound done at the Parinatologist office (I have never even heard of that or been there). I was excited, I went alone because my husband had to work but I assured him I would come home with pictures to share.

This was a Nuchal Translucency, they measure the fluid on the back of the neck. I believe it supposed to be around 2.5mm, well my measurement was 7.5mm. A big indication that something was not going right. The parinatologist said it was a big indication for a chromosome abnormality or a heart defect. I was alone at this ultrasound trying to comprehend what was just said to me without breaking down right then and there, I was thinking in my head Lord, please help me!!!
I spoke to the genetic counselor who suggested I go in for the CVS test. I did that at 14 weeks (05/18/09), a tad bit more painful than I anticipated however, I survived. Waiting for the results was horrible. I wasn't able to sleep well, my mind was just consumed with "what if's".


On May 29Th, we finally got a call back. No chromosome abnormalities, however they did that chromosome #2 is inverted but wasn't something to be worried about and by the way... It's a girl!! I knew it! Since it was late Friday we had to go in on Monday to speak the genetic counselor again to go over everything.

We were told that the inverted chromosome is carried by either parent. We had to get tested for that just to make sure their findings were correct. They said since we are physically OK then there is no big reason for concern. Now the next step is to do another ultrasound to measure the fluid again. She said it could go away on it's own or still be there because of another reason. At this point, I was so happy and I was finally able to sleep well. I still had reason to worry but at this point I really believed it was going to be OK.

Well on June 9Th my world came crashing down on me. I went in thinking nothing of it, another photo shoot for my baby. I was really looking forward to this visit because I thought it was going to go well. Well the Dr. measured and snapped photos while being very quiet, not a good sign. She sat me up and told me that the cystic hygroma had increased and moved into her chest cavity. She did find a heart defect but wasn't able to pin point it because it wasn't too visible because her tummy was covering it, a diaphragmatic hernia. Her organs were all over the place. Then on top of that she has a large encephalocele, her skull didn't close right so her brain is on the outside. She was talking and I was trying to hold it together. No mother to be should ever hear that there is no hope for their child. A few minutes later I spoke to the counselor again and she pretty much told me what the Dr had just said. She will probably not make it through the delivery and that now their main concern was me!!! What? What about her? She is my concern. Now my options. terminate or continue with the pregnancy????

Well didn't take too long before my mind was made up, we are moving forward with this pregnancy. I am worried about my health of course, I have a 19Th month old to care for too. My son and my husband are my world and they need me. Lord, please gives us both the strength to get through this, if in the end I get to hold my little Sami in my arms then it will all be worth it. I know that God is testing me, something good will come of this, I really believe it will.

6 comments:

Hope's Blog said...

I am so glad you decided to start a blog. I am sorry you are having to go through the heartache of hearing about your little girl...it is hard and it takes a lot of courage knowing how sick she is and knowing there is nothing you can do. I know the news doesn't sound good right now, but God would never give us anything in our lives that we cannot handle. Take care of yourself and enjoy your pregnancy!

RMoran said...

Hi Sweets, I love you dearly.

R

RMoran said...

Hi Sweets,

I love you dearly!

mnward said...

Hi Lizette,
Matthew and I want you to know that your family is in our prayers daily. Let us know if there is anything we can do to help.
Love to you all, Matthew & Nancy Ward

Kelly @ The Beauty of Sufficient Grace said...

Someone emailed me about your family's current journey...so I came to read the story of your Sami. I am so sorry for the difficult path you are walking as a family right now as you wait to meet your Sami, wait to see what tomorrow holds, and rest in the arms of the One who carries you through each day. Many years ago, I waited and prayed as well, continuing a pregnancy with a (in my situation) fatal diagnosis. One of my closest friends lost a daughter to emphalocele. And another friend of mine has a child who survived and is functioning well. Please know that we are praying for you...praying for His continued comfort and sufficient grace for all of you...and praying for His healing and loving care for your Sami. Please let us know if there is anything we can do... to pray specifically or offer support as you walk this path.

In His Grace,
Kelly Gerken
Sufficient Grace Ministries

Holly said...

It's so hard getting a diagnosis like this. I am so glad that you chose to carry on for your little girl.

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