Many of my close friends and family know I am superstitious.  I never used to be this way but I sweat Mike (who used to have a"flying suit" because he was so scared to fly) got me this way.  Needless to say I have typically been pretty tight lipped about Finley's discharges for fear I would jinx us.  The one time I publicly said she was getting discharged (even posted it on Facebook) not only did Finley end up NOT getting discharged, she ended up staying in the hospital for almost another month!  So I always try not to say anything.  Well, I stupidly made the mistake of mentioning that Finley was supposed to be released yesterday.  I sort of beat around the bush on this blog, but had told a few people that yesterday was supposed to be the day.  I called up to the hospital in the morning, all signs seemed to indicate it was a go - I packed up all of her things, I got so excited.....and then Mike called me on my way to drop Nate off at Grammy's and told me that our nurse had called - Finley was running a small fever!  WHAT?????

As has become the case quite often with Finley, she had other plans yesterday and thought she wanted to stick around for a while longer.  Apparently she had been fine in the morning, until the guy came to do her echo.  Apparently during her echo she became VERY agitated - to the point that the technician called the nurse and said he couldn't continue because she was so upset.  When the nurse came in, Finley was pretty much inconsolable, and so the nurse assessed her, noticed she seemed a little clammy and took her temperature rectally and found that her temp was slightly elevated ("technically" they didn't consider it to be a fever because a 'fever' is 38.5 degrees celsius and she was 38.2).  One thing we have learned about Finley this hospitalization is that we can't rely on the anxillary temperature - her rectal temperature is more of a true picture of where her temp is.  The doctors weren't super concerned about her temp, but they asked the nurse not to give Tylenol immediately and instead watch her to see if it climbed.  Tylenol would otherwise mask it if it continued to climb.  The other theory was that she was in pain or uncomfortably from the technician doing the echo (geez - I don't see why someone applying direct pressure to a fresh open heart surgical wound would be uncomfortable - do you?). Needless to say, after a while, her temp began to drop and the nurse gave her some Tylenol to help her feel more comfortable.  That didn't immediately help - when I got there she was still very cranky, didn't want to be held, couldn't get comfortable, etc. so the nurse gave her a little Motrin, she fell asleep for literally 5 minutes and she woke a different baby!

The rest of the day went well.  She was in a good mood all day and then at the end of the day - poof - she conked out on my chest and proceeded to get so sweaty that she soaked my sweater!  It must have been quite the slumber though because I left the hospital just before 6 pm - I called at 10 pm and she was still asleep and I called again at 1:30 am and she was STILL sleeping!  How much do you want to bet she woke up right after that and was up the rest of the night?  Hahaha.  Hopefully not!  In any event, we have no idea when she is coming home.  And even if we do - WE AREN'T SAYING!

And Nate, he continues to amaze me every day with the things he knows, observes and communicates.  A couple of the things he said to me yesterday - "Mom - can I go see Grammy?  I want to see if she got her purse back" and "Mom, how is Grammy going to take me to McDonald's or Burger King if she doesn't have any money?  That bad man stole her purse".  The other thing is that he just has such a big heart and he is so thoughtful.  When I was getting his juice out of the refrigerator yesterday he took out a bottle of Finley's breastmilk and he said, "Mom.  You need to take this to the hossible for Finny".  And I said, no sweetie, I don't need to bring that today (thinking she was coming home) and he said, "No mom.  Finny needs her milk".  And then he proceeded to give me two of his loveys (his "bunnies) and put them in my bag and told me to bring them up to the hossible for Finny.  I am just loving that he is calling her Finny.  He is also really funny about having his picture taken - if he is with Finley - he is THE biggest ham - if he's by himself, this is the sort of thing I get...

This is him trying to hide under the table because I was snapping his picture (note the delicious french toast I made him in the foreground!). And although he is going to again kill me someday for this next picture, I just cannot help but take these pictures because this makes me laugh so hard.  This kid just LOVES his potty chair because he can pick it up and move it to where ever he wants it to be.

The last thing I wanted to share with you today is the link to a blog of another CHARGE family.  I don't know the Sharbaugh's personally - I first became familiar with them from the CHARGE Foundation's listserv (message board) and I remember very vividly the first time Marissa posted because it was only about two months after Finley was born and so we were in the thick of everything with Finley and I had responded to one of her posts just to let her know that we were very much in the same place as them and that if she needed anything to let me know.  I have followed her blog a bit because the link is always in her posts and sometimes, like today, when another family is going through a hard time, other parents will post links from other family's blogs on the listserv and ask for prayers.  We are reminded every day how fortunate we are - whether it be during our time at the hospital being in the company of other families who are going through much harder things than we are, or when reading the Sharbaugh's blog and being reminded of how much different our situation could be.  Through our journey, there have been numerous times when the uncertainty of our situation has brought the overwhelming fear of what would happen if we lost Finley but I can only barely begin to understand what this family is going through.  Please say an extra prayer for them tonight.

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