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Saturday, January 7, 2012

Upcoming appointments

Poor I is going to have a rough week next week--she has appointments everyday but Thursday. It certainly will keep us on the go!

On Monday we go into The City for her first Synagis shot. I was doing some more reading on it today and a full course (five shots) runs between eight and sixteen thousand dollars. Holy Cow. Since it took us two months to even find somewhere to do it and get her approved, she is only getting three shots instead of five but still. O_o Thank God it is covered or I don't know how we would pay for that.....

On Tuesday, it is off to the outskirts of The City to see her cardiologist. The days leading up to a cardio appointment are anxiety-laden for me. And I am anxious about any news we might get, good or bad. If we get good news, I worry about what that means for her symptoms--if her heart is better but her symptoms are worse, is there something else wrong with her? But then I worry that since her symptoms are worse, it will mean her heart is worse and we will be talking about scheduling her surgery, the thing we desperately want to avoid but also sometimes wish we could just do, if that makes sense. There is always a risk with surgery, even though the prognosis for her conditions is excellent. But the small chance that it could go badly is reason enough to not want to do it. But then again, I hold and cuddle her every day and listen to her struggle to breathe and every week I anxiously wait to see what her weight will be at the per's office. I worry about how much she sweats, even though her is cold to the touch. I worry about the fact that she almost always sounds congested, even though there is no drainage from her nose. I worry that when she turns pale, turning blue is just a few moments away. I worry when she is trying to nurse but has to choose breathing instead and so has to go hungry because she just can't manage to breathe and suck at the same time--up until this point she has always been able to wait a little bit and once her breathing calms down, she can eat but what happens when it doesn't calm down and she can't eat? Surgery could fix all of those things, despite the fact that it terrifies me to even think of them opening up her little heart.

On Wednesday, she sees her ped for her four month well baby visit--more shots, poor thing :(

Thursday we have a day off

Friday she sees the home health nurse.

In other news, poor S was feeling a bit down this afternoon--Baby I was feeling a bit grumpy and usually if S holds her, she cheers right up but today she just started to cry when I put her in his lap. Poor kiddo was just a little heartbroken. I tried to make him feel better by talking to him about how much teething is bothering her and he seemed to accept that but I am hoping she is a bit happier tomorrow so he can hold her and get his usual smiles from her!