Ava

Our dear little baby is still fighting. Tonight, though her eye lids are so very heavy to her, she tried to open her eyes while in her Daddy's arms. With a lactate of 14 she grasped my finger and pulled against gravity.

After some temper tantrums and some choice phrases on my part, the Attending came in to speak with us about Ava's plan of care. (For example treating her unbalanced PH with bicarb. Not responding to critical results quickly, not knowing how high the lactate actually was. Not informing us of Ava's acidic state. Talking about why they stopped the bicarb. We weren't sure when they did and neither are they.) I did make certain that I informed the doctor that I am tired of thinking for them and I would like to be Ava's Mommy now. I am just fed up with the whole flawed hospital system. No one is responsible. There are too many cooks in the soup, per se. There is a lack of communication and a willingness to take responsibility for actions. "That wasn't on my shift." "That's not anything I can control." These are notions that frustrate me in my professional life as well. They are not something that only AI has issues with either. It makes me sad that you have to kick and scream to get heard. Your care is only as good as those who are willing to advocate for you. I simply want for them to communicate with us, advocate for Ava, keep us apprised of changes and write in the chart that we can hold our baby and have her sisters visit. But no, with every shift change comes a new approach and red tape.

I spoke with CHOP today. There is no argument amongst anyone that Ava has mitochondrial disease. There is discussion that Ava is putting this world into a whole new realm. She is the kid who has not yet been reported. (I made certain that the Attending at AI knew that so that I could remind him that Ava is here so they can learn from her. I also reminded him that Eric was another kid they could have learned from but he doesn't remember that he took care of him). I am hoping that we gently care for Ava and see what she needs. It is not my goal to let her camp out with a high heart rate, ignore copious sweat and salty taste. They did "make note of it", because of course that will help. They did listen to my suggestion of a sweat test. ( I'm not that smart, the idea stemmed from one of her nurses). I think the information is important to have.

There is less than a 1 percent chance for the general population to have the 2 mito babies we had. This makes them so very special. God called Allan and I to marriage. This is part of His plan for our family. We are blessed to actually have the living children we do. Ava is still living. She is still fighting and we are blessed to have her too.

Last night Emmy was sad and was missing Ava. I told her that she did not go to God yet. Emmy asked me if I thought she would. I told her that I thought so. Alexa asked why. I told her it seems that Ava has a lot more things broken in her body like Eric did. Alexa asked if Ava was born like that and if she was made that way. I told her yes. I told her that God loves Ava even if she's broken and He loves all of us too. She said, "Then why did we get her?" I told her I didn't know why God made her this way but we have her so we can love her. (love her we most certainly do!)

I have often said that although I would never want to relive Eric's life and death again I would to have him again. And to have him was to live through that experience. Eric never would have been who he was if he weren't "broken". As much as my heart is broken, I know that Ava is the special, sweet (well actually salty), tough little girl she is because God made her that way; broken and perfect. I am so glad that I've had the chance to love her, and know her and allow for all of you to know her too. It is my honor to be the mother to two very special and broken babies and to three very healthy and vibrant little girls.

I am sometimes ready to give up on Ava. I wonder if today is that day. I was actually convinced that it was. I've been convinced about that before as well. But today was not the day. Ava is refusing to let me give up on her. God is not done with our little baby girl, our tiniest ladybug. We, of course, will not give up the hope that God could restore her and keep her on this earth. As long as there is breath there is hope. I do know that there is no human or medical way that this child should live. I still don't know what God's plan is for Ava but I do know that I hope that she is restored and with us. God wants us to express our hopes and tell Him what we want He understands that and our need to do it. We need to understand that our life is not our own, no matter how hard we try to hold onto that "thing" or control it.