Just Chillin'

It's been a few days since I wrote, but that's because there haven't been the crazy ups and downs that we experienced last week.  We are all exhausted!

Jolene was officially removed from the ECMO machine on Wednesday.  The surgeons came in and removed those horrible, huge cannulas and tubes in the afternoon and our baby girl hasn't looked back since.  We are like a mini cheerleading team at her bedside, telling her how good she is doing and to keep it up. :)  Since being removed from ECMO Jolene is steadily improving.  Her blood gas levels are improving little by little, and her x-rays show that her lungs are starting to grow.  The doctors started to decrease the pressure on her ventilator yesterday and so far she has responded well.  The catheter is out, sedation and pain meds are being reduced a little each day, the arterial line in the umbilical cord was removed today, and an OG tube has replaced the old tube that was in, meaning that Jolene might be able to begin "eating" in the next few days.  Each task is little, but it all adds up...baby steps!  Below is a Jolene's "just chillin'" pose - a comfy moment in between the hard work of trying to grow lungs and fight tubes!

There have been some excellent family moments this week too...Jason finally got to hold Jolene yesterday and I was able to be there with him to witness such a priceless moment.  That girl burrowed into her daddy's arms and couldn't have been happier.  It was so hard to put her back into that bed by herself.  Right after that we were getting ready to leave and she opened her eyes up big and wide and was "talking" to us...who could leave then??  She just looked and looked at us, following our movements and voices.  I'm pretty sure she was looking at Jason and then at her tubes - back and forth - telling him "Daddy, see these?  I don't like them and I need you to get rid of them please!"  I truly believe that us being able to be with her as much as possible, giving her reassuring touch and voice makes all the difference in the world.  

Emery also got to come to the hospital today and finally meet her little sister.  She was so excited all week.  The tubes and wires didn't intimidate her at all - it's like they weren't even there!  She asked lots of questions about how things worked and talked to Jolene and held her little hand.  Then she asked if she could read her a story.  There are no words to describe our melting hearts.  To be blessed with such wonderful children is absolutely priceless and indescribable. 

We now wait (not so) patiently for things to progress, and are trying to get into a new "normal."  While there isn't really such a thing and this whole process is so, so very hard, it's doable.  With all of your support and prayer and with strength given us by the Big Guy upstairs, it's doable.