Today was one of em's specialist appointments. Cardiology. that one freaks me out. last year when we went i was sure they would find nothing. i mean she had had at least 30 ultrasounds done on her heart before we moved here. all saying the same thing. it's fine. apparently "fine" doesn't mean that same thing to everyone. apparently it can mean "well, your kid wont die right this second". anyway, they found an ASD (hole) and a Bicuspid Aortic Valve. both of which weren't "fine" to me. granted i didn't do my normal freak out when i got this news because my AMAZING cousin Emily also had an ASD and had open heart surgery a few years ago. she is doing great and her hole was pretty darn big. they didn't find hers until adulthood. It probably isn't the best for her but works out great for me. i have someone to go to with all my questions i forget to ask the cardiologist. anyway, she is great. it really calms my nerves. until today.
we were hoping em's hole was closing/closed. it isn't. not at all. :( not only hasn't it closed even a little but the right side of her heart is beginning to swell. it is no longer in normal limits. needless to say, not what we had hoped. we have been moved to a 6 month check up schedule. he was hoping she would make it to 20kg before we needed to do the surgery route. it isn't looking good. i was afraid this would mean we would have to do open heart. thankfully the surgeon is OK with doing the catheter procedure(described on the ASD treatment section) around 15kg so we only have about 4 lbs to go. he also gave me the clear to feed her as much butter and cream as i want without hurting her heart so it shouldn't be to hard to get 4 lbs in 6 months. (as i was typing this i kind of freaked myself out and had to call the nurse. i mean how do you not freak out about your kids heart swelling!)
oddly I'm not becoming overwhelmed by this. don't get me wrong. i am terrified. absolutely terrified. the overwhelmed thing might change as her appointment and eminent surgery grow closer. i expect it to. i just hope i don't have to watch my daughter wasting away before my very eyes like i have had to do in the past. several times. like i said in my previous post though, she is one tough cookie. she can handle herself. i know that. but in the back of my mind i know there are always risks with having surgery. em will have had 7 after her heart repair. 7 probably before she turns 3. statistically that isn't good. lets hope she is to stubborn to deal with statistics.
as a side joke, josh and i decided to test whether or not anyone was reading the paper work they made us fill out. again. so whenever they asked for an explanation of any of her medical problems we just put "hole". no body said anything. this just validates my point that the paper work is just to cover their butts. they don't read it. they just check to see that you signed it. if that.
i promised cute pictures this time around. these i figure cover two bases. seeing what my little trooper goes through on a routine basis and adoring the cuteness. and fat. but hey, we worked hard on that fat.
In a chair just like us.
our chairs are boring.
something way more interesting.
you've got to be kidding me.
fine i'll do it.
ok so i know she looks totally obese in this picture. it's just the perfect angle to show off all the fat we worked so hard on.
pretty cute right?