Tuesday, November 9, 2010


It's 5am and I am awake...ugh.  I have been awake since 3am thanks to a little man who hardly sleeps anymore, a back that just won't get better and quit hurting and anxiety over a cardiology check-up.

Will's last cardio appointment went really well.  So well, that he was taken off his last medication and we were moved to 8 week appointments instead of 6 week ones.  I am praying that today's appointment goes as well, but I am worried.  Yeah, I have the normal (can you call any of these feelings normal????) anxiety for just wanting a good report, but we also have some concerns since his last appointment with Dr Awesome.

Will hasn't ever been a "pink" baby.  He's always had a slightly blue tint to him, but unless you see him next to a "pink" kiddo, you don't really notice it.  When he would eat or get really tired, his hands and feet would get even more blue, almost purple.  But lately we've noticed a lot more blue.  Not just when he's eating or tired, but when we're holding him, or sometimes when he's sleeping, really just random times.

We've also noticed major differences in the temperature of his hands.  Where his coarc was (and still somewhat is), is after the blood flows to his right arm & head.  That was one of the reasons he had blood pressure differences (high in the right arm, low in the left arm and legs).  Lately his right hand & arm have been keeping very warm, but his left hand will be ice cold.  This is new.  We've never noticed temperature difference before in his hands.  This really worries me.

One of his still trouble spots is his aorta.  They were not able to completely repair his coarc and it hasn't been growing as well as it should.  It has grown, which is good, just not as much as it should have.  I am terrified that these new symptoms are a sign that his aorta hasn't grown enough.  Or that his coarc has recurred (about 20% of babies with a coarc repair have that happen).

So if y'all could say an extra prayer for him today, we would really appreciate it.  And now on a lighter note....he's some pics of the kiddos :o)

Isn't he looking so grown up!  I can't believe we have less than 5 months until he's a year old!  And you gotta love the puff stuck to his cheek...haha!

Julianna drew her pumpkin face again this year and we carved it, but she did an awesome job!  I love the crooked smile!  She is doing so well cognitively her teacher said she has run out of activities from school for her to do!!

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