What a difference a week makes

Let's see, where did I leave off....Lucy was recovering well from surgery, she was still sporting the breathig tube, catheter and chest tube along with the pic line for any medicine.  On Wednesday night the breathing tube was removed and replaced with just oxygen.  Here's Lucy without the breathing tube. It's the first time we were able to see her mouth and hear her make sounds.  Her cry was so precious (even though she sounds like a duck).

  

  They waited a day to take out the catheter to make sure she was peeing enough and that all the excess fluids were being removed.  She was still a little puffy, but that was mostly in the abdomen.  While her recovery is going very well, her coping skills need work.  Anytime she is unwrapped for a diaper change or assessment she goes nuts.  She cries hysterically, her heartrate jumps to over 200 beats per minute and she gets bright red.  The physical therapist said she is over sensitive and showed Mike and I some things we could do for positive touching to encourage her to calm herself.  Some of the exercises are just touching her face with a finger for five seconds in multiple places around her mouth and chin.  Another is unswaddling her partially so she gets used to it without the negative impact.  Wednesday, Thursday and Friday she was pretty agitated so they put her back on some sedation medicine and added some pain medicine as well.  She mostly slept, which is fine as that will help her not expend any extra calories.  Mike and I were both able to hold her again.  This time with less blankets and we were able to finally get a sense of how little she is.  Mike can almost support her whole body and head with one hand and part of his forearm.  I mean a normal size pacifier is almost half her head!

Sunday night we were back at the hospital and to our surprise the oxygen and chest tube has been removed.  It was like she was a different baby, the agitation had disappeared.  We unswaddled her and changed her diaper and she didn't make a peep. She just layed there looking around.  Nurses said the chest tube could have had something to do with it.  

Anyway, with the oxygen gone, they started her on breast milk.  Right now she is getting it through an NG tube (which is a tube that goes through her nose straight to her stomach).  This allows her to get all the calories without exerting any though the eating process.  The cardiologist also told us they will be sending her back the to the NICU because she no longer has a cardiac issue and the NICU is best suited to help her grow.  We still don't have a discharge date, but with all the tubes out and most medication stopped we're hoping to see a light at the end of the tunnel.  Here's one more picture with only the NG tube.