This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Monday, August 23, 2010

Eye Twitching

Needless to say, I've been under a little bit of stress lately. And by lately, I mean ever since Dr. Pophal told me that Scarlett has a moderately leaky heart valve. I was flipping out the day he told me, but I tried to play it cool, But within a week, I was losing focus at work, unable to concentrate, flaking on things I normally don't flake on... and according to my co-workers, I wasn't acting like myself.

Which lead me to write the email to Dr. Pophal and Beth. The email basically said that I'm uber stressed out about her leaky heart valve and I'm literally losing sleep over it.  That's when Dr. P said that he wanted to see her back in a month to check for an echocardiogram. If the echo was the same or worse, he wanted to do balloon angioplasty to try to help her LPA increase bloodflow and decrease the regurgitation (leak).

But as we all know, despite the heart cath (balloon angioplasty), the leak remains.  So, then it was stress wondering how much it's leaking, and how much pressure is on her right ventricle, which we were told we'd know after an MRI.  Well, if you've been following me, you know that her MRI did not give us the answers we had hoped. (Then of course to add insult to injury, she ended up in the Emergency Room as a result!).

Well, now, we have to rely on echo's and weight checks to determine when Scarlett is in heart failure. WHICH TOTALLY SUCKS! I was so hoping that the MRI would give us some sort of time frame. A time frame as to how much time she has until her next surgery. 3 months? 6 months? 9 months? one year?... But now, we have to take her to the cardiologist every 6 weeks for weight checks. Because when she starts to plateau (no weight gain at all), that means her heart is in distress. And we also have to take her for echocardiograms (which Scarlett hates!), to see the leak and the pressure. An echo can tell us whether the leak is mild, moderate or severe, but an MRI would have been so much better. An MRI would have told us HOW MUCH it's leaking and HOW MUCH pressure its causing on the right ventricle.

So, for the last month off-and-on, my left eye has been twitching. It's basically unnoticeable to anyone other than me, but it's there. I googled "eye twitching", and it said it's caused by severe fatigue, or STRESS.  Hmmm...really? I can't imagine why I'd be tired, or under stress? Can you?

This is Scarlett doing Itsy Bitsy Spider. It's her favorite song. : )

She loves Doritos.

The hospital gave her this shirt last November at the C.H.I.E.F. graduation. It says "St. Joseph's Fixed My Heart". It fits her kind of small, but it still fits her because she is kind of small... underweight that is. But she's still growing and still gaining, so I just have to pray that she continues to grow and gain, because when she stops gaining weight, then it's time for surgery number 3. : (


  1. U guys are in my thoughts and prayers <3 and just so u know ur not alone with the whole eye thing mine hasnt stopped for 16 mos now. =/
    Lots of Love

  2. I can understand the anxiety when your child shows ilhealth and sometimes we are unable to handle the stress and show bad symptoms.But keep good hope there is good medication today and all will be well very soon.