Post Surgery Day 20

I walked in on Ellie today as she was kicking her legs, trying to swing the toys on the play gym.  The nurses were starting to notice that she was acting like she was bored and the new toys certainly did the trick.  She saw me, gave me a smile, starting kicking her legs even more and starting babbling.  It's so nice to see her in such a happy state.

Ellie's drainage from her chest tube has decreased about 50% but it is still draining.  They are going to hold off on surgery for now in hopes that it will keep decreasing.  If the flow does not decrease by Friday she will have the ligation done that afternoon.  The blood cultures have been negative and there has been no recent growth with the infection that she had so they are placing another picc line in her leg today.  Ellie's special anatomy poses a problem with central lines.  Because she has the occluders in her heart on the left side and the picc line on the right side was just pulled out on Monday, they are going to go after her leg.  Due to the difficulty of seeing the veins in that area, she has to go to radiology to have it placed.  This new picc line will allow them to give her the higher concentration of nutrients that she needs.  The flolan is coming off today and they will start weaning the milrinone tomorrow.  In talking with the nurse it seems like once she is done with these medications she can move up to the regular surgical floor.  But she still has a long way to go - beginning tube feeds on non-fat formula once the chest tube is completely dry which could be 2-3 or more days, and then trying to get used to bottle feeds again. 

Ellie started music therapy today and I was able to sit in. She had just barely woken up and was a little grumpy but after a while she got a little more in to it.  The therapist put bells on her feet and hands and tied a maraca to one hand to let her make some music.  At one point she started to sing a bit too.  She also put Ellie's feet on her guitar as she played it to let her feel the vibrations and she even did a few strums with her toes.  It was actually very interesting and taught me a lot of things that I would never have thought of.  One thing she noticed was that Ellie's auditory response is very delayed for her age.  The therapist mentioned that babies that are in the hospital as frequently as Ellie has been have this auditory delay.  She is better on the right side than the left and it's probably because all the monitors and pumps with all the bells and alarms that are on her right side. 
Ellie is getting closer to coming home but it still seems like things are going to take a while before we get her here.  I remember feeling this way when she was born and in the NICU for 3 weeks.  There was so much criteria that she had to meet that it almost seemed impossible for her.  I don't think I will get my wish to have her home for Mother's day.  That would be the best gift ever.