Not Taken For Granted

This past weekend Zack and I were reminded of how thankful we are for our night nurses.  Some may wonder why a night nurse is such a big deal so let me tell you why... With Ava's trach and being on the ventilator, the air she breathes in and out bypasses the vocal cords so you are unable to hear her unless air is leaking around the trach and up through her throat to her mouth or nose.  Therefore, if Ava is crying because something is wrong, she has secretions that need suctioned, or she spits up from her 2:30am tube feed, we are completely oblivious unless we are physically watching her.  With her crib set up on the main floor, our upstairs bedroom seems miles away.  Even though we don't got to sleep right when the nurse gets here at 10pm, we are up before she leaves at 6am, and I get up once in the middle of the night to check on Ava, the peace of mind we have to get a reasonable amount of sleep each night is a true blessing.  In saying that, this past Saturday and Sunday night our primary night nurse and the other two night nurses we have that work a night or two a week were all unable to work.  So Zack and I each took a night to make a bed on the floor in front of Ava's crib and have a slumber party.  Needless to say we didn't sleep nearly as well as we do in our beds but it undoubtedly made us even more thankful for our night nurses come Monday night! 

Now about the girls...

Ava went to PT and the vent clinic today and once again had a fantastic report from the medical staff.  She is getting stronger and stronger at sitting up alone, rolling over to her belly, and lifting up her torso and head when on her belly.  She still needs a little support when she is sitting up but a little nudge will get her to rebalance for the most part.  When she is in her crib she is always flipping over to her belly regardless of her tubes.  I've been trying to get a video clip of this but of course every time she flips I'm not prepared with the camera and every time I have the camera she doesn't feel like flipping.  Go figure.  As far as her vent settings, they moved her pressure control from 26 to 24 and her pressure support from 23 to 22.  And we are proud to announce that the plan is now for Ava to be completely off steroids (prednisolone)!!!  She was getting such an extremely small amount that we anticipate this to be a smooth wean completely off but prayers are welcome!

Reese is busy crawling around now and always wanting to pull on Ava's tubes and cords.  (Poor Ava)  In the last couple days she has been extremely interested in finding out how loud she can scream.  Not because she's upset but because she thinks everyone should hear her.  Boy does she have a lot to learn.  Ava just looks at her like "Who is this crazy baby?".  Reese is also loving different kinds of fruits and vegetables with some of her favorites being apples, peaches, squash and green beans. 

Here are a few pictures to capture our busy, happy girls.