Wednesday, September 10, 2008

Autopsy Results...

Today we talked to the doctor that was on when Ava passed away. He had the final autopsy results in. We have been waiting for quite awhile, but talked to him about a week after Ava passed with the initial report. The autopsy showed that Ava passed away from the shunt in her heart being totally clotted off. Incase you were not aware, the norwood surgery Ava underwent included the shunt being placed in her heart to allow blood flow to the lungs as the surgeons were begining their re-wiring of her heart. With the blood clot in the shunt, blood was not able to get to her heart which in turn stopped the flow of oxygen in her body. The doctor stated tonight that in the six years he has been at CMH this is the first time that he has seen a norwood baby whose death was a result of the shunt totally clotting off.

After speaking with him tonight, the doctor stated that he believes that the reason for the clotting was because of the large amount of drainage exiting her chest tubes. This drainage coming out was also protein that her body needed (which I guess helps with blood not clotting). He went on to say that if he could have done anything differently that he would have increased the amount of "protein" (he used a different term) she would have gotten.

Ava had a cathedar done about three weeks prior to her passing to look at her heart and it showed everything looking fine, including the shunt. There was no worries. They feel like the shunt began to clot about two weeks prior to her death. I asked if that could have been the reason her O2 sats were decreasing...he said that could have certainly been the case, but at the time she also had a lot of fluid around her lungs which they thought was contributing to the low sats (which was probably part of the problem). I know that Nate and I were concerned about the shunt occluding being a cause of her low sats but was reassured because the cath looked fine. It is amazing how fast it clotted off, especially because she was getting a daily dose of aspirin to help keep her blood a little thinner.

At this time, I do not feel differently towards how caring the nurses, doctors and surgeons were to our family and Ava. I do wish though that we all would have been a little more opened minded to what the cause of her low sats were, and did more to find a solution, instead of accepting it. I hope that I fought hard enough, but know doubt myself. Was I too accepting of answers the doctors gave us? I don't know if I will ever know the answer to that one.

After talking to the doctor it has flooded my mind and heart with all the emotions of that day. I just pray that she wasn't in pain...I couldn't even imagine what it would feel like to not be able to breathe. The more I type about it the more I start wondering what if...what if we found the clot would Ava still be her today? Would she be happy? Would she be doing good? Would she be at home with us? I know that these are answers that we will never have, and to dwell on them will do us no good. I try to remember that Ava is in a better place, whether or not I was ready to let her go. My biggest fear is that she was in pain and that she was scared. To not be able to do anything to help her, to sit there and watch the doctors work on her and just cry. To hold her and tell her goodbye was the hardest thing that I ever had to do in my life but I am thankful that I was there to do it. I know that God has his plan and we may never understand it, maybe never accept it but I can not do anything to change it. I feel blessed to have been a part of Ava's life and I know that she is watching over us right now. I owe it to her, to Kaden and to this new little one to keep living, to keep smiling, to keep loving. I owe it to her to keep her memory alive and to remind Kaden and teach the baby everything about Ava and her strength. I want her to look down from Heaven and see the mommy she knew while she was here with us. I want Kaden to know that he makes me just as happy and that I enjoy ever last bit of time I have with him and I want the baby to know a happy mommy and that he is so wanted in our family. All three deserve the best, I want to be that best for them.

Sorry for all the mixed emotions, I am sure a lot of this might be confusing, but that is how my brain is working right now.


BiLlY, sAm, AnD bOyS!!! said...

I know all to well about dwelling on the "what if's" but it's life- NOBODY can say they don't think "what if..." I can't imagine the hurt you feel about Ava not being in your arms. I am not a religious person but I believe she chose you to be her mom and that is because you were the BEST for her and her for you! I don't know if I'm making any sense so I'll just continue to say that you, Nate, Kaden and Ava are an inspiration to us! You are amazing! My heart goes out to you and I wish there was a way I could help with the pain. Thinking of you!

My Three Sons said...

You cannot consume yourself with the "what ifs" That will never do any good. As hard as it is to accept what has happened, you have to let that part go. You must believe that the doctors really did give her excellent care. I have seen so many different doctors at Children's and really feel like our kids are their best interest. Holding on to your precious memories of Ava is a wonderful thing. The saying if I only knew then what I know now is not a rule to follow. It only makes you stir crazy. Please focus on Kaden and your little peanut. Your right, Ava wants to see the best mommy in the world be able to live, smile, and have peace. That is why she helped you out with your new addition. I trully believe that. I was leaving a comment on Elli's blog and came across this poem. You may or may not have seen this but it sure hits the spot.

"God saw you"

God saw you getting tired
when a cure was not to be
so he wrapped his arms around you
and whispered "come with me"
you didn't deserve what you went though
so he gave you a rest
God's garden must be beautiful
he only takes the best
and when I saw you sleeping
so peaceful and free from pain
I could not wish you back
to suffer like that again

God took your precious little angel to help her even though it wasn't best for you and Nate. Remember she is breathing so easily, her heart doesn't ache. She is looking down at you and I'm sure she is already teaching your little one so much about how special you are. I think Ava has hand picked this baby just for you.

Now stop tearing up and be happy. You deserve that.

Give Kaden a hug and kiss for me and Carson :-)

We love you Amy and don't forget what a wonderful mother you are!!

Regan said...

Don't beat yourself up over what might have been or if you could have done something better. Ava was blessed to have you and Nate as parents. You gave her a chance at life even when you knew she would have medical problems, not everyone would have done that. That makes you an amazing mom!

The Bryant Family said...

That is the same surgery Tucker had. It is good to know the cause but yes it would definately make you wonder the what ifs all over again.
I am so sorry about your loss. I dont think I could ever come to grip with a loss as big as yours. I would crawl in a whole I think.
You are a strong women and did all you could do....God just had a different plan.
Hugs to you....

Kyle, Aimee and Ava said...

Please do not doubt yourself. Angel Ava is so lucky to have you as her mommy. Sweet Angel Ava is resting peacefully with the angels watching over you, daddy, bubby and her soon to be baby brother.


Rachel said...

You know what??? You do not have to explain how you speak in your blog...You have EVERY right to have mixed emotions and every right to be sad and question What If!

I am glad that you know what the cause of death was, but it will Never change your hurt. And nobody can expect your hurt to change from this diagnosis!

You are one spectacular woman and are doing the best you can given the circumstances you were given.

I know Kaden knows you love him...I know that Ava knows that you love her and I know that this new little guy will too.

You are a hero to me and I look up to you with how well you have coped.

I am here for you always and praying everyday for your family.


CrackerJacks said...

I am at a loss for words...I really cannot imagine how you feel.

I do know that Ava is happy and healthy now and that should be a positive feeling in your heart.

Let me know if you need anything.

Isabella said...

Amy my heart aches for you and Nate. You guys are truely amazing people. I think Ava will always be smiling down on you knowing that she has the best parents in the world.
Love and Prayers Always

Amie said...

Please do not doubt yourself for your actions in Ava's final days. I know that it is impossible though. I do it too. WHAT IF... It seems you did everything in your power and then some! As for the answer to the not being able to breath, well, our hospice nurse and the doctors at Primary Children's Hospital all told us that dying from lack of oxygen is very peaceful. You basically just fall asleep and never wake up. And, well, when I saw Brody die from just that, I believe it to be true. So, Ava probably went peacefully with minimal pain. Please try to find some comfort in that. You didn't do anything wrong. Its all in God's plan...although we don't understand it now. We will one day. I hope you can see that! (but I'm a hyporcrit because I find myself in your shoes more often than not). Good luck to you! I think of you often and wish you and your family all the best!


Mary B. said...

Oh Amy. I'm so glad Bruce got the results and you finally got to talk to him about it. It doesn't make anything easier, but at least there is an answer to one question. I am sorry. I am living in the world of what-if right next to you. I love you all.

Anonymous said...

i do vot know you but i followed a link from elli's and I read our journey. I just wanted to say that she was a perfect little angel. You did everything you could and showed Ava just what love means. I know its hard but try not to beat yourself up about it. If Ava is at peace with God and God just loved Ava soo much he could not bare to be without her.

Anonymous said...

I know how this info on the autopsy has had to bring up all those feelings for you. You did all you could do. I can recall a blog entry that you made about being frustrated with the doctor and you had spoken to them. How could you possible know and when the doctors even did not know to check.... God sent her to this world for a reason and I can see the effect she has had on so many in the family and from comments from friends. She inspired and so did you and Nate.

I cannot even begin to express my happiness over your little baby boy! Wonderful. Know you are loved and God has wonderful plans for you because of the love you have in your heart.


Pam said...

I would be doing the same thing if I were in your situation.

I have done it with Rhett's overdose. I do it everyday. I keep thinking what if I had asked to have his nurse changed when I walked into the PICU that morning and had an uneasy feeling.

It's hard to not wonder if you could have done something differently so that your child wouldn't have had to suffer.

I have always wondered if Rhett was scared too when the affects of the medication took affect and his heart slowed down and he stopped breathing.

It's nothing that any of us should ever have to go through. I know that our outcomes were different Amy, but I want you to know that it's normal to beat yourself up. I'm not saying it's healthy, but it's what we as parents do when we love them so much and something traumatic happens to them that is out of our control.

I love you guys and we think of you so much. Hang in there okay? If you need to talk you can email me and we can swap phone numbers.


Carey said...

Amy, I hope you can find peace in your heart. I wish I could tell you not to rack your brain with the what if's, but I'm the queen of worrying, so I'm sure I would feel the same way. I know you're an amazing mommy and you will show your new little baby boy the same love and happiness you've given Kaden and Ava.

Hugs my friend, Carey