Tuesday, March 31, 2015

Heart!

I must  share this little tidbit. Tehilla has learned where her head, nose, teeth, tongue, hands, tummy, feet and toes are. For the first time ever, she noticed her scar. She pointed to it and said, "This?" I told her, "That's your heart. Heart." Then I took her hand and put it over her scar so she could feel her heart beat. She felt it and started laughing. We did this a few times.

Then I said, "You have a very special heart, Tehilla." It kind of made me tear up as I remembered my first blog post. I was pregnant and we were just finding out the details of HLHS and trying to understand the diagnosis and making a choice whether to go ahead with the pregnancy.This is what I wrote:

"This blog is a little secret, for now.  We'll see if I ever get a chance to open it to the public.  It's about a little girl, named Tehilla.  She's still a fetus right now.  That's why this has to be secret.

Right now, I'm 20 weeks pregnant with her.  I can feel her kicks and I've seen her little heart beat on the ultrasounds.  Her heart is what has gotten me here in the first place.  It's quite unique, and special, I imagine we'll tell her when she's older.  Tehilla has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a rare and severe heart defect.  We just had that diagnosis confirmed yesterday.  My heart broke, as the doctor described a very sad and scary future for her.

We've been given an unimaginable burden to decide whether to terminate this pregnancy.  We are so overwhelmed with this decision.  We have an appointment with a genetic counselor on Tuesday, to help us understand the big question of "quality of life."

Well, I got to tell her! This has been one crazy ride, but I repeatedly thank G-d that it has led us here.

2 comments:

  1. crying as I read this post in ny - may you always see nachas from tehilla and the rest of your special family

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