Waiting and more waiting

I am feeling very frustrated and a little angry today. It seems like all we do is wait. Wait for results. Wait for tests. Wait for Ava to get better. Wait for Ava to die. It's horrible to read. It's horrible to wait.


The implications of her probable mitochondrial disease are mind blowing. I find that I do some research and all I read are hypothesis and genetic mumbo-jumbo. There are think tank doctors and Neurologists. The result is a whole bunch of vitamins that don't really do a lot of good for a deficiency in Complex IV of the electron transport chain. Other complexes the vitamin cocktail works. Eric's deficiency was in Complex IV. It seems that people don't live too long with a deficiency there. This is exactly why we are so desperate for Ava to not have what Eric had. With that deficiency the road is different but the destination the same.


I wonder how long it will be before we don't have Ava anymore. I wonder what toll it will take on each of us and our family. I shudder at the prospect of feeling that level of pain and anguish again. I tire in fighting for Ava. I think to myself, "what am I fighting for?" but the answer is "For Ava".


I will never understand this road we are on and why we get to carry this heavy burden. I hold tight to the fact that God created Ava and therefore she is good. God can only create good. A broken person does not mean bad. In our humanness, we are all broken on some level. Whether it's mainly physical or mental brokenness we are broken. Only He is perfect. He loves all of us despite our brokenness.


Therefore, God created Ava. She is good and she is broken. But God loves Ava. She is on loan to us from Him. It is our job to love her too. He has a plan for her little life, no matter how long it should be. We know that. But we hurt so very much. And we just plain want a miracle that she is a keeper and does not have what Eric had.

We are drained today. There is an ebb and flow in a long hospitalization. I hope we are on an upswing tomorrow. Ava was admitted because she didn't have any reserve. We now don't have any left. We need to fill our tank to keep on going. Tonight my heart aches and is screaming for this nightmare to end. For it all not to be true. Then Ava tried to open her eyes a peak.

I look at her lying so helpless in that bed. I wish I could fight her fight for her. I can't. It's not mine to fight. I would do anything if I could be the one who had the tube in my throat and 2 in my nose. I would gladly boast 2 IV sights and a million blood draws and accuchecks. Instead I keep vigil at her bedside, longing to trade places.

I fantasize that there is a miracle cure in feeding her. That maybe they would uncover another reason that she is so compromised. I know we don't have a definitive diagnosis yet. Whatever it is, it will be a long way off. Today I just can't see past the tubes, the bed, and the edema.

Ava is on hold for vent weaning. She's developed some more atalectasis in her right upper lobe. She is very swollen tonight as well. Her protein level is low. Her Neurologist thinks that we need to see how she does with her nutrition as that should help. The Intensivitst agrees. (Tonight is our first night with him and so far we are impressed with him). They are going to give her some lasics, collect a urine sample and some more blood work. Ava may also need another transfusion as well. All this medical tweaking and balancing act is enough to drive anyone crazy. We are constantly waiting for the other shoe to drop. Each time something crops up we brace ourselves for what we feel is inevitable.

It happened to Eric, so we wait for it to happen to Ava. We know that Ava is not Eric. We know that God is in control. We know that His plan is just and good. We hope that Ava's story will be long and we will have her in our home with her sisters.

We came home and got to kiss the bigger ladybugs tonight. They were full of hugs, smiles, stories of their day. I look into their beautiful faces and am overwhelmed with how much I love them. How much I hurt for what they are going through. I look at our kids at home and our one in the hospital and wonder when and if we will all be together as a family. It seems so far away and so impossible. This morning I made pancakes, sausage, and eggs. We sat at the table and I thought I heard Ava. That was the first time through all this that happened. It gave me pause in my moments of feeling like a "normal" Mommy. I still am greatful for the breakfast and the snuggles. Even the fight over my lap (which usually bugs me to no end).


We are so tired of the intervention, the blood draws, the waiting for results we don't want to know about. We are tired of being separated from our children. We tired of waiting. We are suspended in time as the world goes on around us.

We have no idea why we are asked to do this again. But we do it. We feel it. We are living it. We are surrounded by the love of the Lord and an extensive support system. We are so grateful for that. Each prayer lifts a piece of our burden, our heartache, are praises, our hope, our sorrow, our request for a miracle. We would never be able to manage if it weren't for all of the prayer support, financial support, emotional support. The letters of encouragement. The meals. The snacks. The hugs. The socks, Yankees shirts, the bears and little somethings for our daughters. God is working we know it, we see it, we feel it.