A Bit of a Rough 2 Days

"I love to play with my animals, but I get camera shy when Mommy gets close to me..."

"So she has to hide behind the couch and I pretend I don't see her so she can get a cute picture of me!"
So, I started blogging yesterday but then it was just really late and I was very sleepy so I shirked my duty and went to bed! So pretend it's last night for the first half of this post:

Well, the morning started out with a bang, or should I stay a scratch, today. After Haley woke up, had a bottle and a diaper change, she was laying in her crib and playing with Sophie le giraffe while I performed some morning ablutions. Suddenly she started crying very loud and when I rushed into her she had both of her eyes closed and lots of tears coming from her right eye. For probably 10 or 15 minutes after that I carried her around and she did stop crying but wouldn't open her eyes. I finally tricked her into opening her eyes by playing with one of her toys that makes noise, and I thought it looked like their was a hair on her right eye. After a while, when she would open her eyes wider and I had some better lighting, I could see that she had a little divot/scratch on the cornea of her right eye just over her pupil. :( Luckily I had this realization at 11:55 am as her pediatrician's office closes at noon on Wednesdays, and we managed to catch them at the last minute and have them prescribe her some eye drops. Poor little Bug, what bad timing to go and hurt herself!

So, she was pretty much a crab pickle for the rest of the day because whenever she would get sleepy and rub her eye, etc it would hurt again and she would get all upset and hold both her eyes closed. It was a bummer. We were glad we had Grandma, Grandpoppy, and Mimi for crabby-baby-entertaining support all day. (Daddy had class.)

As for today, (real today - Thursday) she was a much happier baby! We had to be up at Children's Hospital for Pre-Admission Testing at 9:30 am so we were all pretty sleepy since she wouldn't go to bed until one. The upside to this was that she slept until they got to her which was around 10 am. Then she was the picture of perfection the whole time we were at the hospital, which really mostly involved a physical and a chest x-ray for her, and lots of talking to doctors, anesthesiologists, nurses, etc for us. One nurse told us that he'd been working there for a year and that Haley was by far the best, quietest, and happy baby he'd seen so far! :) I did confess that she's not ALWAYS quite so perfect...

Tomorrow we have to be back at the hospital at 6 am and they will take her for surgery at 8 am. The first 1.5-2 hours will just be getting her anesthetized, prepped, draped, and IV's placed, and then the actual surgery will start. They said to expect the whole thing to take 8-9 hours, so we will hope she's out of surgery and recovering around 4-5 pm. It's a full day event, and it is actually the only surgery Dr. Galantowicz will do tomorrow - I can't imagine what that will cost our insurance company! This surgery is obviously much bigger than any of Haley's other surgeries, and she will be sedated for at least 24 hours afterward and have much more intense pain management. She will also have 1-3 chest drainage tubes placed along with two temporary pace maker wires in case she has arrhythmias post-op - then they could hook her up to an external pace maker temporarily. They said even if this happens it doesn't mean that she would necessarily have to have a permanent pacer placed, that sometimes it just happens initially post-op or can be managed with anti-arrhythmic medication. If all goes well, the tubes and wires could be pulled as early as 24 hours post-op. There is also a risk that with being on the Heart-Lung machine, getting blood transfusions, and fluids that she will be so swollen that they will have to bring her out of surgery intubated, on the ventilator and with her chest open (but covered with a bandage of course), and wait for her to urinate out all the excess fluids. That would probably take a couple of days and then they would take her back into surgery and close her chest. Dr. G says this happens in approximately 1/4 of patients, and it terrifies me. I suppose I should find some comfort in the fact that it is so 'common', because that makes it less of a big deal some how, but it scares me to death. But lets not dwell on that and continue with more post-op possibilities: There's something called Superior Vena Cava Syndrome, which is when they disconnect her SVC her from her heart (which she actually has 2 instead of the usual one - more work for the surgeons!) and they graft it to her lungs, that instead of the heart sucking the blood from the upper half of her body like normal, that it will flow by gravity into the lungs. Obviously this is a slightly slower process, so for the first few days it may take the body awhile to adjust. They said you may be able to see a clear demarcation across her chest where the upper half of her body will look swollen and larger than normal, until the congestion subsides and the blood flow adjusts. Then she'll go back to normal. But during this time there are some very painful headaches associated with this, and they will be making a point to manage that pain. As for the surgery as a whole, there is a 5% chance of death, heart attack, stroke, permanent kidney or liver damage. I know that means a 95% chance that all will be well - at least eventually - but somehow 5% seems like unacceptably high odds for my little Love-Bug.

On a happier note, after Children's we had to go down to Katy K's office to pick up keys so we could get into their house, and while we were there we had a tasty lunch of Potbelly's in her office. It's a very pretty office and she has quite a view. We also got to meet one of her fellow first year lawyer friends, Guy, so now he believes Katy's 'one friend' is real! I still think we should count for at least 3 friends since there are 3 of us!

Now we're spending the evening eating tasty dinner, getting fat on ice cream, drinking beer, and watching the Olympics. Perhaps we will just move in here and skip going to the hospital tomorrow...

I so much wish I could go through all of this for her. Last night I prayed to God to trade our hearts. I asked him to give me her heart and to give her mine, and that I would gladly go through all of this for her. And while I know in my heart that this is not possible, I so desperately wish that it could be.