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.
Do Not Worry
8 years ago