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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Friday, September 28, 2012

September 26th

We just passed a very important anniversary. September 26th.

September 26th 2011 we woke up, got ready and headed off to the doctor to find out if our baby was a boy or a girl. I just knew it was a girl, Greg was convinced it was a boy.

I was right, baby was a girl! We knew her name would be Lauren since before she was born. We didn't expect to find out that she had Down syndrome. The tech was very quiet and then brought it the MFM (maternal fetal medicine aka high risk) doctor. As soon as he came in I started crying. He said, "The ultrasound findings show a few markers that make us concerned. We see a thickened nuchal fold,a shortened nasal bone, shortened long bones, a bright spot on the heart and a hole in the heart."

I immediately said, "You think our baby has Down syndrome." The complete shock I felt is indescribable. It felt like an out of body experience. When I think back to that day I still feel like I watched it happen rather than actually being a part of the conversation. It is the weirdest thing, I wish I had words for it.

I had recently graduated from nursing school and we learned about Down syndrome in school. I actually had an adorable patient with Down syndrome. Funny thing? I was pregnant with Lauren at that point and didn't know it yet. Feel free to think I'm crazy but I think God was preparing my heart.

The doctor said we would have the option of having an amniocentesis (obtaining a sample of amniotic fluid with a large needle and testing it for chromosomal anomalies) but that we would meet with a genetic counselor first. We could get FISH (don't know what that actually stands for, but it means rapid results) results in 48 hours and a full report in 10 days.

Then he said that with those results we could "make our decision". Wow. I understand presenting the option, I do. Studies have shown that the vast majority of women in that same situation would make the decision to terminate.

Greg and I looked at each other and then I very calmly replied "Termination is not an option for us and I don't want it brought up again." It wasn't.

I used Carrie's office to call my twin sister at work. A decision like having a huge needle go through my belly was not a decision I could make without her. As soon as she answered, she knew something was wrong. I was crying. I said, "Amanda, they think our baby has Down syndrome and they want to do an amnio. What am I supposed to do?" I couldn't have made it through those moments without her. Greg is my husband, my rock. But Amanda is literally the other half of me. We're identical twins. She told me that she loved Lauren more than anything in the world and she would support our decision to find out for sure and she would also support us if we decided to wait it out.

We called our parents on the way home. I felt so defeated that Greg had to literally support me when we walked to the car. It was one of the very few times I have seen my husband cry. I know he was trying to stay strong for me.

They said we certainly didn't have to have the amnio. Our chances of having a baby with Down syndrome once all of the ultrasound findings were applied was "Upwards of 80%". We were pretty confident that she would have it. But we needed to know for sure. So I had the procedure. We found out 2 days later for sure. But September 26th is the day I knew in my heart.

I wish I could go back to that day and hug myself. I wish I could've seen into the future and known how much our lives would change for the better. While I totally understand that all the feelings of grief, worry, despair, sadness and confusion are totally normal and even necessary, I still can't believe I was sad about Lauren.

My Lauren. I felt like I was grieving the Lauren I wasn't having and had to love a completely different baby.

I thought Ryan would resent her:
 
 
I worried that I wouldn't be able to connect with her:
 
 
 
Embarrassingly, I worried that she wouldn't be pretty:
 
 
Or happy:
 
 
Or be able to play with toys:
 
 
I was afraid she wouldn't have a sense of humor:
 
 
I worried that Greg wouldn't bond with her:
 






 
I worried that she wouldn't be fashionable:

As you can see, I was worried for nothing. I was afraid of the unknown. I am so glad that I've had a year to look back and realize what a gift we've been given. I love my kids more than anything on this plant and I wouldn't change a single thing about either one of them.

Happy September everybody.

2 comments:

  1. I can totally connect with your experience with Down syndrome. While I didn't have a prenatal diagnosis, all those same emotions--fear of the unknown, worry, uncertainty--come with the unexpected diagnosis pre- or -post-natally.

    You are in for A LOT of fun! You're just discovering all of Lauren's secret weapons of beauty, silliness and willfulness. All of these will take her beyond what your imagination can conceive.

    Ha! I love that you have a "big glasses" picture of your sweet one too!

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