Wednesday, May 6, 2009

Because Sometimes I Just NEED to Be Mad

Yeah, so this really isn't my best week. I'm a big, crabby, assholey mess inside...and I'm not even up for changing my mood. I am, instead, wallowing in my funk. Kind of counter productive. Meh.

So of course part of what's bothering me is what's going on with my Dad. He does seem to be doing well after the surgery and has already passed the "which toe am I pinching" test put before him by some of the surgical staff, a good sign that he's getting the feeling back in his legs, (and thank GOD for that), but, unfortunately, I have one more mountain to climb yet this week and I'm struggling just a wee bit.

Little's quarterly cardiology and pacemaker check-up is scheduled for tomorrow morning at Children's Hospital, and I am all sorts of nervous about it. My pretty girl hasn't had an echocardiogram in nearly 6 months, and tomorrow she will be having one to check on the function and health of her heart in a way that can only be done with an echo. I seriously can hardly breathe in anticipation. And it's silly, really, for me to get so worked up about it, as the last echo she had showed nearly *normal* heart function...which was truly more than we could have hoped for at the time...but 6 months have gone by since that last test, and my head knows that in that amount of time, anything could have changed in there.

It was only a little over a year ago that we originally found out that she was in heart failure in the first place, and less than a year ago that she had her last surgery and things started to improve for her health-wise. All of it recent enough for me to remember every grueling detail of what took place between those two dates, though I suspect that I'll never forget. And while, most days, I'm able to stay really positive about things, reminding myself how truly lucky we are to have a, now, healthy Little with us each. and. every. minute. of. each. day, some days I just can't help but get pissed off about all of it. When I read articles about how Complete Heart Block only occurs in 1-2% of all pregnancies in mothers who have autoimmune issues (so that's an even smaller percentage of the population), and that only a percentage of that 1-2% of babies will require a pacemaker, and only a percentage of those babies will go into heart failure (and it's like, 5% people, not 50%...which makes her, what? Like 1 in a million??) I just can help but get pissy that all of this happened to my otherwise perfect little girl. My beautiful, spunky, sweet little girl.

If only I'd known that I had an autoimmune issue, maybe we could have been under the care of a rheumatologist who would have been on the lookout for the early symptoms of her condition...if only I'd had my ultrasound at 20 weeks instead of 18, maybe we could have caught the heart block sooner and stopped it from becoming so severe...if only we could have fallen into that other 98% of autoimmune pregnancies whose babies turn out healthy and fine...if only so many things. And sometimes, I just NEED to be mad that my little girl is the 1 in a million, because it's really not fair and the sheer bullshit factor of it all just pisses me off...and that's where I am today. Be warned.

So tomorrow we'll begin the routine, that we've come to know so well, of getting Little ready for her sedation and her echo. And we'll take deep breaths as we sit by her bedside, watching the reds and the blues of her blood flow flash up on the ultrasound screen, while the tech. measures and the doctors evaluate, and we'll pray like we've become so accustomed to doing...and we'll wait because that's all we can do. And I'll be hopeful. And I'll stay positive. And I'll take whatever news the doctors give us with as much gusto as I can fathom...tomorrow. But today...I'm just going to wallow and be angry.

1 comment:

Rebecca said...

Big giant hugs! I hope things look wonderful tomorrow!!

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