So today we took Lil' Bit to the cardiologist for another echocardiogram. Although her pressures were slightly elevated from earlier, it was generally the same--in December Dr. S got 42 and Dr. R got 48 and today Dr. S got 49. Still better than the 60s she was at, but 20 is normal. So, what does that mean? I asked what purpose the meds served if the pressures weren't going down. The answer was that they may be what's keeping her pressures at the level they are currently at. So, instead of her having a heart cath this November and getting weaned off her meds, she's going to get a full-sedation echo this December and a heart cath next November when she's three. That means we have to keep medicating her 6 times a day for at least the next 18 months.
The difficulty is that it's extremely hard to do anything when your child needs meds at 5, 6, 10, 2, 5 and 6, and it's extremely hard to find babysitters who you trust to medicate your child properly and timely. It makes scheduling trips and just figuring out how to get in nap time and meal times really difficult. Although we still plan to make our scheduled trips this year, it's going to take a lot more planning.
Don't get me wrong. The fact that her pressures haven't increased is great news, and I'm lucky that there are meds that keep her healthy. I just had thought the light at the end of the tunnel was this November and now it's been pushed out a year, with no guarantee that that's the end either.
And so, as I drove home today from the doctor's office, I asked myself several questions to which there are no easy answers. We had attempted to schedule my pregnancy with Oliver so that I would be due after everything was done with Lil' Bit. Now that the end won't come until almost 2014--if at all--are we willing to try having another child in the midst of all this craziness? Can I take the risk of having another child knowing that, at least currently, I lack the capacity to cope if the next one also has medical issues? How long do I have the patience and ability to wait while we try and figure out the answer to these questions? The longer we wait, the older I get; the more we pay for embryo storage fees; the longer we make our child-raising years; and the longer we delay my hysterectomy.
I know that I don't have to (and shouldn't) make any decisions today. But if I had to, I would say that I've hit my squeal point. I think Lil' Bit will have to be enough. I just don't have it in me right now to cope with pregnancy and Lil' Bit's meds and the lack of a guarantee on the health of any subsequent baby. And that makes me even more sad. Because I feel like I've lost everything all over again. I am overwhelmed. I am tired. I feel like a complete failure. I feel like I just can't catch a break and the world is dumping on me and I don't know why. It sucks. And all I can do, is just keep going. Because really, at some point, I have to reach a tomorrow that is better. I just hope it's sooner rather than later.
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