I had no idea I would be this exhausted- having someone else take care of your children is supposed to be more restful, right? Kidding... I know that I'm exhausted emotionally because of our roller-coaster ride that we endure on a daily, sometimes hourly basis. Grace had a good day today- but it does come down to a daily basis. At any given moment, Grace could take a turn for the worse- we have been told that we are not out of the woods, and it doesn't appear that we ever will be until she's had her next surgery. This surgery is a temporary fix- the shunt she'll grow out of, but it's so that she can grow big and strong before an even more intense surgery. To this I ask- more intense?!? Seriously??? I don't know how much more intense I can take. I have officially seen my daughter's heart beat, while looking through her chest. While some man may have her heart someday, they'll never see it like I did. :) Poor humor...
But, Grace is strong. The goal today was for her to burn off some of her fluids. The surgery makes her about 5x her size with swelling, mostly fluids from the surgery. Today's goal was 100 cc's within 24 hours and within 12 hours she had already hit 91! Unfortunately, that means she'll probably burn more than she should, more quickly than she should, and they'll have to add more fluids back to reach an even balance.
Grace is pretty high each time we see her- I would want to be too. They cut through and broke her sternum, separated her rib cage, pushed aside her lungs and heart and sewed a piece of plastic to an artery. When that wasn't big enough, they cut the artery, sewed stuff to it, then sewed more stuff to it and attached all of that to the heart. Then they pushed her ribs back together, wired her sternum and stitched her up. 12 hours later, they put a catheter up her groin (after poking her 5+ times) and shot dye into her heart. Then they ripped her stitches back out, unwired her sternum, separated the rib cage and put a stint in place to keep her chest open. Then they let her wake up- sounds like a scary torture film, right? But she had her eyes open today for a good portion of the day. She grips our fingers and responds to our voices- the lights are definitely on, but unfortunately Grace is only halfway home. The surgeon thinks he'll close her back up on Monday- and then hopefully, hopefully, hopefully she'll heal quickly and we can go home in the next 3 weeks or so.
I've picked Grace's official song- I find myself singing it to her multiple times throughout the day, and often times I'll sit down and listen to it just before dozing off for the night- it never fails to bring tears to my eyes. The song is Gracie, by Ben Folds. He apparently wrote the song for his daughter, Gracie.
I'm exhausted and nodding off for the night- I'll add more tomorrow. Each day is a journey, a sometimes painful yet beautiful adventure. Grace is such a gift- I love you Gracie girl! XOXO