Thursday, November 24, 2011


Our family has a lot to be thankful for this year.  As always, God has blessed our family in many ways and despite hard times, he has a plan for everything.  Today the girls got a little taste of Thanksgiving.  As Zack, Grammy, Nana, Pappy, and I gathered around the table, Ava and Reese got to join in.  They tried a little mashed potatoes, cranberry sauce and turkey in their mesh feeders.  Boy did they make a mess!  As the day comes to an end we are so thankful for the family and friends in our lives and pray that everyone had a wonderful day with their loved ones. 

Also wanted to update everyone on our doctor's appointment on Monday.  Once again, Ava was doing so great they lowered her vent settings.  And the most exciting part...we are taking Ava off the vent for 5 minutes three times a day!!!  She is doing well when off the ventilator so we are excited to see how this continues.  However, the doctor says she needs the constant pressure of air to hold her lungs open so if she were off much longer than this she may begin to struggle and work harder to breathe.  We are patient though! 

As far as Reese, she is crawling everywhere, pulling up on things, and has started trying a sippy cup.  Of course she is always talking and wanting attention as usual. 

Here are some fun pictures from the last couple weeks!

Too much fun in the crib during nap time!

Ava loves to bury her head during nap time!
Not too many November days like this left....playtime out on the deck!

Monday, November 21, 2011

Watching Over

They say that sometimes life throws you curveballs.  Well, let's just say that we have experienced a curveball.  Last Wednesday, my dad, a.k.a. "Pepaw", was taken home to be with our Father above.  After having a brain aneurysm rupture, he could not survive the damage the bleeding did to his brain.  The pain in my heart is indescribable.  I am confident that the pain will lessen but never completely leave me.  It breaks my heart to think our girls won't remember their Pepaw but we are determined to teach them what a wonderful person he was.  The smile he could bring to another's face, his friendliness to complete strangers, and his love for his family will never be forgotten.  I can only hope and pray that Ava and Reese will someday touch as many lives as their grandfather did.  And in the meantime we will hold tight to the memories that we have of him, remembering the time he had with the girls and the love he showered upon them in the short time they had together.  We know he will be watching over us even though he isn't with us on Earth anymore.  And as I close this post I urge everyone reading this to cherish the time you have with your loved ones and don't take one minute together for granted. 

Wednesday, November 9, 2011

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.