Little windows of happiness....

As I talked about in my last post, most of yesterday was a major down day.  She wasn't up for doing anything we suggested and was just feeling down in the dumps.  Fortunately, last night things started to take a little turn for the better for a bit and some windows of happiness opened up and our happy girl was shining through.

She got up and walked to the potty across the room.  We started talking about how good it felt to stretch her legs and convinced her to go on a little walk outside our room and around the unit halls.  She started out really slow, and we had to help balance her, but it was very sweet that as we walked around, almost all the nurses and doctors in the halls would talk to her, compliment her shoes or her hair, and I could tell it was really helping her feel good.  We looking out the windows for a while and talked about all we could see.

She put her hands up against the cold window at one point and noticed the steam from her clammy hands left a print on the glass.  She then started drawing lines and things, just making a mess of their clean glass, and then she drew a very big smiley face.  Despite all she is going through, the first real thing she drew was a smiley face.... She is so amazing and such an incredible example to me.

Several more times that night we would go back and forth between our room and walking the halls.  Over time she got really fast and we even had fun trying to skip and hop down the halls.  She even walked up to a random nurse at one point and started shaking her hand which is totally unusual for her.  

In between our walks she was more interested in doing some fun activities.  She has decorated her window with a few little stained glass butterflies and flowers.

And then the best part of the night was the dance party.  It had to of been close to midnight.  Brad was asleep but we were doing some stretching after getting up to go potty again and then some dancing ensued.  I turned on some music and we probably went through four or five songs before she was worn out.  We smiled and laughed, and she did some amazing robot moves.  It was so fun and made me feel so happy seeing my sweet girl and her funny personality shining through.  Overall though I was so glad that those dark feelings she had been feeling most the day weren't permanent.

I had other very happy and mood uplifting moments yesterday when I left this place for a couple hours and went to see Bentley and Olivia.  Eden was sad I was leaving, but she gave me her blessing and the go ahead so out I went.  With bags if dirty laundry and pumped breast milk, I broke out of here with a little skip in my step.  I got in the car, turned the music up loud and sang horribly as I drove back to Parker feeling like life at the moment was completely normal.  

The drive felt like it took forever, but the reunion with my babies was sweet.  We got to play toys, jump on the trampoline, eat lunch and just hug and kiss a lot.  I snuggled with Bentley as he feel asleep at nap time, and I even drifted in and out for about 30 minutes. It was blissful.  Saying goodbye to them after a couple hours was really hard, I dreaded going back really, but at the same time I was completely ready feeling like I had the perfect emotional boost to keep on going.

And now, as I type this, Brad is back in Parker wrestling and loving on these two, Eden is watching "Frozen" for the first time today, but probably the fifth or sixth time since we have been here. She is a little tired right now, but as soon as she is feeling up for it we are planning to play "spa day" and wash her hair, have a sponge bath, and of course a pedicure and manicure.  It should be lots of fun, and hopefully feeling refreshed will boost her spirits too.

As far as practical matters, unfortunately this morning they did not remove the drain tube in her neck incision.  The gauze they removed still had some bloody leakage so they felt it was probably best to give it one more day.  Also, she is having some issues with really thick mucus that is causing problems.  Last night and this morning she was trying to cough and clear the mucus and both times it turned into vomiting which is obviously a huge concern for aspiration.  Unfortunately it's a vicious cycle we are in- she won't eat because it's so difficult to swallow, so she is getting a formula milk diet.  Milk makes mucus worse so she is just getting some gross, really thick mucus that is difficult for her to clear.  Hopefully we won't have any aspirating and maybe with more suctioning throughout the day we can keep it from getting too thick and sitting too long down in that tube.