Tradition

We decided to take a little break yesterday. We spent most of the day at home and only a few hours at the hospital. It was an emotional day for all of our family. I was at home with the bigger bugs and my heart was aching. We came to see Ava and my heart was at home.


While we visited her, we observed her getting weighed. It was quite a production. I have to say that it was very telling for me, personally. She is so frail, so weak, so limp. My soul ached as I left last night. Reality came crashing down around me. I have not been able to hold our daughter for 16 days. I didn't know. I could only see her in the bed.


I'm fearful that I know now. That I don't need labs, test results and whatever else they throw Ava's way. I want to not fell this way. I want it to be wrong. I know that Ava can live if it's God's plan for her. He can heal her. I don't know if He will. I don't know if it's His plan.


I put Elaina to bed last night. She was having a hard time. I was worried that she was getting an ear infection as well. We chatted and I discovered that she is confused about what is happening in her world right now. She was able to tell me what she heard. That Ava is sick "lots" and that she may have to die, but we don't know yet. She then looked at me and said, "Mommy, I don't want Ava to die". I told her that I didn't either. She then asked me to sing "Little Rabbit FuFu" and some crazy Elaina version of "Itsy Bitsy Spider" that had a pig sliding down with it's feet out. Sure, I could do that, why not?


After the girls we all tucked in we had our traditional after Thanksgiving snack at 10pm (Turkey sandwiches). We then decided to enter the mayhem of Black Friday Shopping. We decided that no matter what happens with Ava we have to try and keep our family traditions the same. We of course never went out at midnight, or together, but we wanted a train for the base of the tree. We got to Toys R Us and the line was HOURS long. For the life of us we could not figure out what the hub-bub was about. We packed it in and went home. So much for our sense of adventure. I was pretty sure that Toys R Us wouldn't have enough toys to support the line.

My Dad and I got up and did some early AM shopping. I don't think either of us felt like it. But it's tradition. I found a train for the base of the tree. The smiles made it all worth while. We got ready and back to the hospital.

I didn't know what we were going to see when we got here as is true every day. Today Ava was not acting right. She was uncomfortable. She her sats weren't great. Not too bad, but not Ava. She was sweaty. She didn't do well with her C-PAP trial. She didn't gain much weight. Some, but not enough. She just didn't look good.

So it was time for x-rays, labs, and to go on full support of the vent. Ava's lactate is up, higher than it has been. Most likely due to working hard, burning all the extra calories she's given and now burning more muscle.

This points to what what we have been concerned about. Ava is most likely never going to be able to come off the vent. We are going to be faced with some decisions that we have been dreading. We feel inadequate to make. But we see how well is is now doing on the vent. She is more responsive, more comfortable. This is telling. Telling what we are not sure, but it is speaking to us.

We are headed out earlier tonight so that we can Fa La La La and decorate the Christmas Tree. (We don't feel like fa la la la laing, but the other bugs do and it's tradition.) We do need a reminder as to why we can live this life we are living, why we can have hope and why we can put one foot in front of the other. Even through our anger, our grief, our exhaustion. We can carry on not because of that baby in the manger. But because of what He did on the cross. We will never know why. We will never be able to understand why our family is called to this path. We are. We walk it. We accept it. We don't like it. We just will have to do it.