Not Again.

Throughout the day yesterday Avelyn continued to put out large volumes from her chest tubes, much of it chylous. Her surgeon became concerned and ordered an echocardiogram. Sean and I received the potentially devastating news later last night. Her pulmonary arteries could not be seen at all, this coupled with right atrial and ventricular pressures at three times normal. Her tricuspid valve is also leaking terribly again. Her surgeon believes her right pulmonary artery has narrowed to near occlusion and likely has some left sided narrowing too. She goes for a heart cathertization in just a matter of hours. They may be able to do some interventions in the cath lab but it's not likely. She is not far enough out from surgery to have much done via heart cath. Interventions could pop her delicate suture lines. 

So what does all this mean? 

While we don't know for sure yet, it likely means Avelyn will need another open heart surgery to re-correct the tricuspid valve that the increased pressures have likely torn, and to re-patch and open her pulmonary arteries. I don't know how going back in rehashing everything and allowing more scar tissue to form on top of that she already has will affect her, because it has to. I don't know how we'll be able to trust sending her under the scalpel again. We almost didn't get her back last time. 

I have spent so much time dreaming of her future. I have so many wishes for her. Simple things like nursing her, watching her grow, seeing her experience all her "firsts". My wishes for her aren't huge, but they are everything to me. She is everything to Sean and I. We want so eagerly for our baby to survive and thrive. I have prayed so earnestly and continuously. I don't know why these things keep happening and threatening her survival. I wish I did. I don't know why she is in this state to begin with.

My logical mind tells me it's not my fault. 1 in 100 babies are born with CHD. Some with more serious defects than others, mine with MAPCAs. I did all I could to create a healthy prenatal environment for her. I know that. I know that it's not any one person's fault that she got endocarditis. I know that we have gotten more time with her than many parents of children born with similar defects do. 

Yet still, I am angry. I find myself searching for a source of blame. I know it's not productive but I can't help it. We question everyday whether she'll see the outside of this hospital. She may not. Thinking about it makes me want to bundle her up and take her away. Take her somewhere I can protect her. But that's the thing, Sean and I can't protect her. There's nothing we can do for her. We have made decisions that have put her through hell. If she doesn't survive, I don't know how I'll live with myself. We have tortured our baby in hopes it will provide her with life. We have put her through painful procedure after painful procedure. I sincerely believe she will make it. That I will one day be reading her bedtime stories while smelling her freshly washed hair. I believe that someday I'll tuck her into bed and watch her sweet face while she sleeps and dreams comfortably. 

I have to believe that. But why? Is it for my own selfish reasons or for her benefit? I really don't know. I don't know much anymore. 

This morning Sean looked up from her bedside with more love in his eyes than I have ever seen and said, "She looked at me, like really looked at me. That's the first time in weeks." Her antipsychotic medication seems to be bringing her back to us through her withdrawal induced delirium. 

We are cherishing these moments. I have found myself trying to memorize her warmth, the length of her eye lashes, the roundness of her nose, the rich blue of her eyes. She's so beautiful. More beautiful than I could have ever imagined. She is so loved. She is such a wonder. 

Please pray we will be bless d enough to keep her.