Mommy's Turn for Surgery

I hesitate to use Keira's blog as a platform to discuss my own health concerns, but seeing as they will imminently be affecting Keira, and I'll be calling on you fans for help, it seems as good a place as any to get the word out. 

So, yah, I'll be having open-heart surgery 2 weeks from today. Honestly, Jeff and I keep using pointed obscenities and laughing. It seems preposterous. 

I've always hated running and have never been very good at it, but at the urging of friends, I decided last December to give it a good college try. I agreed to run the Ragnar relay in June with the idea that I could be free of running forever if I didn't enjoy it by then. I ran every other day religiously for months. I was not progressing. At. All. And I was frustrated by my shortness of breath. When I started having frequent dizzy spells in conjunction with running, I decided to check it out with my doctor. My doc sent me to a cardiologist who sent me to a pulmonologist who sent me to a lot of expensive tests and today I met with the cardiothoracic surgeon. 

Apparently I have a condition that I've had since birth that involves a hole between two chambers that isn't supposed to be there and one vein that's draining entirely into the wrong part of the heart. He said there is 2.6 times the amount of blood pumping through my lungs as there's supposed to be and all that extra blood is supposed to be going to the rest if my body. 

Weirdly, my first response to finding out I had a heart condition was a rise in my self-esteem. A good reason for always having been the dancer that sweat the most. A good explanation for eternally needing naps. I've forever pretended that these things don't bother me when they've perpetually made me wonder whether I'm just out of shape and/or lazy. My body's been working hard! 

Being a congenital condition, this surgery is by no means an emergency. However, I will be forbidden to lift anything (read: Keira) for 3 MONTHS post-op. For this reason, Jeff and I agreed that the sooner this gets done, the better. Keira is rapidly gaining weight and she's relatively healthy at this point in time. So here we go. 

I'm excited about the idea of having considerably more stamina and energy in the not too distant future. And, once again, I'm thankful to have all of you rooting for us. 

I Made Pie!

It's the little things that indicate that I'm feeling a little more normal. I find myself listening to the radio in the car. I invite extra boys over to play at our house rather than sending my boys off to someone elses'. I clean out my closet. 

My first clue, about a week and a half ago, was that I made pie. What an extravagent use of my time and energy! To engage in a "project" that had so many steps (going to the store, requiring my full attention for a bit, dirtying the kitchen, 90 minutes to bake, 2 hours to cool) and wasn't directly related to the well-being of one of my children seemed like a wild and crazy thing to do that hadn't happened in ages. A friend came over and held Keira while I rolled out the crusts. It was a blessed day.

Keira has bounced back after surgery so much better than any of us expected. Like a newborn, she's gained an ounce a day since the surgery- nearly 2 pounds last time we checked. The GI doc and I practically did a dance when the scale read 19 1/2 pounds. In fact, he put her on a "diet," of all things, saying she couldn't continue to gain that fast. 

Everyone is noticing that K is more alert and interactive since surgery. She moves her head back and forth much more and uses her arms, in particular, with more volition. It's been a lot of fun using her stander because she seems to like it too. First, we put on her AFOs (ankle/foot orthotic) to hold her feet steady, then we strap her into the stander. I've tried to take pictures of her in it, but I think it's a had-to-be-there sort of a thing. The photos tend to look like she's in some old torture device. But most of you probably saw the video I posted recently on Facebook (Not sure why I can't get the videos to upload directly in my blog) and it's incredible. As opposed to sitting on her high chair or stroller, in the stander, she's able to muster strength all the way from her feet and we see her moving her head and arms like we'd never seen before. It is so encouraging to see her purposefully knock down a tower if blocks. I really didn't think those blocks, bought for Liam and used by Ronin, would ever be played with again. Moreover, the facility with which she's moving her head and arms allows for so much communication. She's making it clear that she understands some basic turn-taking, and that she recognizes words of things she likes (bath, shower, stander, swimming, brother, grandma). These little miracles bring lots of hope and possibility. 

My biggest struggle with Keira lately is the wrestling/juggling/drowning in her therapies. I'm pretty sure it is either impossible OR would take a robot of a parent to do all the therapeutic appointments, exercises, and equipment use at their therapeutic levels. I imagine my brother could draw a pretty funny illustration of K sporting all of her devices at once: the theratogs, the hand splints, hip brace, AFO's, and stander, while swinging on the trampoline and listening to music. Ben? 

The current solution? Well, the theratogs and hip brace are on hiatus because it's HOT. Hopefully we'll get back to that later. 

We're also happy that one by one, doctors are going by the wayside. No more ongoing appointments with the surgeon or endocrinologist. She doesn't have to see the audiologist or opthomology at for a year! She'll still have as many, actually more, therapy appointments (OT, PT, speech, feeding, and swimming) but 3-5 appointments per week is much more manageable than 6-8. 

With 2 weeks until school starts, the  boys have just finally started having some downtime. Some opportunities to be bored. I worked pretty hard to make arrangements for them all summer so that they wouldn't have to go to doctor appointment with K and me. It was a valient effort with mixed results. The boys missed me and vice versa. The extended time away from parents took its toll. I'll be ready for the school schedule to return. 

In sum, we're happy to be on the upside again. And my apricot pie with coconut crumble was delicious!