Did you know that 1 in 100 babies in the U.S. are born with a congenital heart defect? CHD's are the leading cause of infant death, and the #1 birth defect of live infants. The cause of most congenital heart defects are unknown, yet funding for research vastly lags behind childhood cancer and other genetic diseases.

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Thursday, July 14, 2011

Still in CVICU

Nic tossing and turning as he sleeps.
It is about 1 p.m. and I just got a text from Beau asking if I have updated the blog yet, so I figure I better get typing!  We are still in the CVICU.  Nicholas has had his round of tests today....chest x-ray, bloodwork, echo....and we have heard that we will possibly transfer upstairs either this afternoon or tomorrow morning.  The team explained to us that usually with PA banding the LV will show signs of stress after 48-72 hours post op, so even though Nic is doing well, that doesn't guarantee a move upstairs.  Lorenzo and I have been sharing a parent's room to sleep in just down the hall from Nicholas' room, so that has been really nice to have a comfortable, quiet, dark place to sleep.  If we move upstairs, only one of us can stay with him overnight, and it is much busier up there.  So I wouldn't really mind just staying put for another night down here in CVICU.

I think a little bit of his personality is starting to come out.  He is pretty much terrified of anyone who wears so much as scrubs and a stethascope.  He needs either me or Lorenzo very nearby whenever they even need to listen to his heart or flush his lines.  He would probably be happy as a clam (well almost) if I could just climb up in bed and snuggle him 24 hours a day.  He has started to say that he is done with this, that he really just wants to get out of this place and go home.  I quote, "let's sail this ship and get out of here".  That's my Nicholas.

Sleeping soundly, for the moment....
One thing that is new is that he woke up twice with night terrors last night and even as he is sleeping now, he is shaking in his sleep.  I remember he did this for weeks following his last surgery and that is how he became a permanent fixture in our bed for the last 6 months.  So I'm going to presume that when we do go home, that our queen size bed will be a crowded one because I'm sure he's going to want to be in there with us, and I bet Sienna will have some serious seperation anxiety after being away from us for so long.  Maybe we should just go get a king???  Ha ha, I wish!

I will let you know when I know more....
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1 comment:

  1. Cindy PierceJuly 16, 2011 at 7:27 AM

    prayers are with you, little Nicholas and the entire family. Love ya, Cindy

    ReplyDelete

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