Friday, March 23, 2012

Yesterday

I wanted to first thank you for all of your texts, emails, calls, messages, and even gifts of love and support. There's nothing quite like feeling the warmth of family and friends in a time of need. We love and appreciate every one of you who reached out to us. I will never be able to express how much you mean to us. Our love to you always. 


I didn't get any sleep the night before. We were up at 5 am and were greeted at the hospital by my Mom and Gary at 6 am. We admitted Aviana, and with that came the signing of the papers no mother wants or should have to for the 11th time. Ugh. What came next was yet another of what no parent, or grandparent, should have to experience and that is the watching and wheeling back of your little love. 


Aviana did great. She always does. The doctor went in and the plate and screws were about to come through, as suspected. He removed all and had a new, longer set to install in its place. He ran into a problem though. The bone, which showed thick on the CT Scan, was anything but. As he looked around, he quickly realized, the scan was not accurately reflecting what was happening inside. Her bone was indeed receding. His description hurt our hearts in the worst way. He said, "her bone is like shale. It's in thin layers and is falling into pieces."


According to Wikipedia -

Shale is a fine-grained, clastic sedimentary rock composed of mud that is a mix of flakes of clay minerals and tiny fragments (silt-sized particles) of other minerals, especially quartz and calcite. Shale is characterized by breaks along thin laminae or parallel layering or bedding less than one centimeter in thickness, called fissility.[1] Shale typically exhibits varying degrees of fissility breaking into thin layers, often splintery and usually parallel to the otherwise indistinguishable bedding plane because of parallel orientation of clay mineral flakes.


Yep...that's the state of our baby's skull. So needless to say, her doctor was unable to anchor any sort of screws or new plates into the area. If he did, we would find ourselves in the very same predicament we were just in. 


So what's this mean for our future? Well at this point, it is not absolutely urgent as she is not able to run, jump, play, walk, or move. If she were able to do these things, we would need to act now. Because she is unable, we have some time. 


In time, there will be other hardware coming through her head. So for me ~ I want her to have to endure as few surgeries as possible. There will be a balancing act as to when the hardware begins to present itself, and what the state of the sunken in area looks and feels like. I will be closely monitoring all of this, and we will be making these determinations as we go.


Anyways, back to yesterday. Aviana was under anesthesia for her head and liver biopsy, but sadly, she was awake for five needle sticks. There are no words to describe the way we felt having to see her experience that kind of pain on top of all she had just been through. At the time of the initial accident, we were in shock and going through the motions. We are not in shock now, these moments are truly just plain difficult!


I made sure we were the first on the schedule, so we would be coming home yesterday. We spent a total of 8 hours at the hospital. Once we arrived home, the routine for Aviana was nap, throw up, cry, repeat. It was terribly sad to see her go through this. In those moments, it was hard for me not to curse the brain injury bastard. I was finding it extremely difficult to not picture what she would've been doing had this God forsaken accident not occurred. She would probably have been running around, smiling and playing - not napping, throwing up, and crying with her head cut opened and her liver punctured through.


Anyway, she is doing much better today. This girl is my hero. I can't even come up with a word to accurately describe the way I feel about her. All words I could use - inspiring, amazing, strong, tough, superstar, etc. all pale in comparison to what I feel when I look into those big brown eyes of hers. 


Aviana ~ 

You are indescribable. 

You always have been, and always will be! 






Look who joined us. Lamby has been with Aviana through all of her surgeries except the first two emergency ones. These are pictures from her last trip.




She wasn't happy to have been woken up at 5 am.

We shared in her pain! 




The all too familiar Kaiser gown...




You're going to cut my what opened?




My beautiful Mom...and Gary too ; ) with Avi.





This picture reminded me of another from not too long ago...








This one of Dave and Aviana reminded me of another from a while ago, it was the day they put her bone flaps back on. It's the way she's looking at him. You can find it here.




She loves her Papa.




Really Mom...with this adult sized cap on my head? Really?




She had her Nana and Papa's love in abundance before they wheeled her back. 




Oh Lamby, you sure know how to save a girl. Not just one, but two. You bring comfort to me, knowing you are with her.




I love you sweet baby.




And then, we waited...




Our sweet ~ after she came out of surgery. 

11 comments:

  1. I am so sorry that you guys had to go through all of that and that her head is so fragile. I can't imagine your heartache. I am thankful that she is feeling much better today. At least you don't have to think about that surgery any longer. Now you can breathe. Go bake the "sucky surgery is over" pie. Sending you hugs and lots of love.

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  2. Such a sweet, sweet little girl! I feel sad for her and for the rest of you that you have to
    live this again and again.

    Dixie

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  3. Love from Philadelphia. By the way, the resemblance between your mother and Avi seems to increase in each photo. It is mind boggling.

    -E.

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  4. Oh Jen. I am so happy to hear she was such a trooper! The one's hardest hit always are :) But I am sorry that the "fix-it" surgery turned into new troubles and worries. That BIBastard is just putting his nose where it doesn't belong! I am amazed and shocked and happy that she WENT HOME in 8 hours!! Never heard of that! Thinking and loving you and all from a mile away :)

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  5. Jen, I know you think, no, KNOW, Aviana is a thousand times stronger than any of those words you use to describe her. But what you don't realize is that YOU are ALSO a thousand times stronger than any word that could be used to describe you. I just want to remind you, maybe tonight you're feeling like you can't do anything, that you're helpless, that this #%%$##^&%$ brain injury is too much. I'm here to tell you, RIGHT NOW, that you are the strongest person I know and the kindest person to boot. Aviana has her strength from you. You just do. You both JUST DO. And I, one of hundreds, admire your strength and realize how unbelievably full of love and fight you have in you.

    I love you so very much and I'm so sorry you have to deal with this %#(&^% brain injury every damn second.

    Let me know if there is anything I can do. Albeit I'm just a few miles away but I can make phone calls, arrange food delivery, I can be someones assistant. Feel free to give my number to whoever is taking care of this stuff for you.

    I love you!!!!!!!

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  6. Sending prayers of love and healing you and Avi's way...

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  7. Ah Jen, my heart just breaks for you all. No words, just wishing I could magically make it all better...

    Love you,
    Jess

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  8. I saw this and thought of you.
    http://bites.today.msnbc.msn.com/_news/2012/03/27/10873334-how-pie-saved-my-life

    Dixie

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  9. Praying for Avi and all of you. She is so incredibly strong, and blessed to have such a caring family. Thinking of you. ((HUGS))

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  10. Dear Avi,
    You don't deserve this and neither do your parents or grand parents. I wish it could all just disappear and all I can do is write a comment on your blog and continue to pray and send loving thoughts into the ethers hoping they some how help. You are beautiful Avi!!!

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