Monday, April 25, 2011

So it's the eve of another hurdle...

We checked in at pre-op at 7:30 this morning, and they proceeded to shuffle us around from room to room, poking at prodding at her till about 4.. She endured fasting, restrained X-rays and at one point today, no less than 7 technicians tried to take blood from our poor screaming Alex, resulting in just enough to coat the tube.. Our little fighter, exhausted and unable to stay awake as she sat on her daddy's lap at the end of the day, is not even nearly done with her battle.. Tomorrow at 7 am we will be forced to bring her back and hand her over to a team of surgeons who will preform the next stage in the surgery, known as the Glen, in which they will redirect some of her blood flow to the lungs in order to lessen the load of her heart. This will, of course, be for the better, as she would not survive another couple months without it, but it will still be very difficult, now that she has been home with us, and as her cardiologist at Children's said, "she's no longer hypothetical,", she is our baby. 

Our very real child who we have grown even more dangerously attached to, making it a heartbreak to give her up to something so scary with only hope to guide us till we see her again. We know she will be okay, we cannot believe any differently than that, and we look forward to bringing her whiny butt home again so that we can trade our exhaustion from traveling, being at the hospital, and watching Alexandra be basically tortured in the name of her health, for a different kind of exhaustion. The kind that comes from round the clock feedings for fussy babies who won't take more than an ounce at a time. That's what we want.. Our picky little princess back at home with her boisterous brother, who between the two of them have Jason and I ready for bed at 10 (only to be up again at 2, of course). Here, on the eve of her second surgery, Jason and I, although terrified for her all the same, have grown to consider our little girl lucky.

Lucky, that she was born into a world with such amazing medical technology and knowledge. Lucky, that she has something somewhat fixable, as opposed to something with no recourse. And lucky, that she was created and put on this earth so vivacious, so determined to live, that no heart condition could ever get her down.

Thanks and Happy Easter!


  1. Thanks so much for the reminder that Alex's Glenn is tomorrow. Will be praying for sure! Life is so much better post-Glenn (although if you got a high maintenance fussy pants kinda kid like we do, I'm afraid the Glenn unfortunately doesn't cure that problem!). Will anxiously await updates tomorrow.

    God Bless,
    Amy, mom to Bodie (14 months, HLHS) and a member of Sisters by Heart.

  2. Hi
    My name is Jenna and i came across your site. Alex is such a courageous, strong and determined fighter. She is a brave warrior, smilen champ and an inspirational hero. I have gone through so much medically during my young life, and I am always sad when other kids have to endure the stuff that I do. I was born with a rare life threatening disease, and love it when people sign my guestbook.