Wednesday, March 2, 2016

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.


  1. Praying so hard for your beautiful, beautiful Masterpiece...everyday. And for your, her parents, who love her more than words could ever express...for hope and a future, and strength and miracles.

  2. You wish & dream of nothing more than you deserve my precious Somer. You & Sean are the most loving & courageous parents I have ever encountered. I am angry too. I don't understand why this is happening to our Avie. I have found myself screaming & crying-questioning Gods purpose in this trial by fire. All I know is this: you have done everything humanly possible to give Avie life. It is now up to God and as much as I hate to say it or hear it, I know it to be true. He gave her to us for a reason and we may never know what that reason entails. But she is and always will be His first and ours 2nd. He created her the way she is and has given us the blessing of loving this beautiful amazing creature. She has more love/prayers/support surrounding her than 100s of people could experience in a lifetime. You must never regret doing all you can to give her life baby. She has no idea what is going on moment to moment but I assure you that the God who created every cell in her body speaks to her in her sleep. He comforts her and surrounds her body with comfort that we cannot give her. Every single moment she is away from you she is watched over by Angels. I believe these things with all that's in me baby. I ask God every morning to speak to you through me because I have no words of comfort for you anymore-I don't understand His plan and I want to desperately. Just know that He knows how weak we are. He knows how much we love Avie. We have to trust that He loves us more than we can understand. He promises in the Bible that He will NEVER HARM US OR FORSAKE US even tho it feels that way at times. He only has good plans for us even when we can't see it. You are such a wonderful Mother and He knows that too. That's why He gave her to you. He knew long before you did that Avie was yours & Sean's and that you would die for her. He's entrusted you 2 with this wonderful creation and He NEVER makes a mistake. Keep putting one foot in front of the other...before long you'll be looking back on these days of torment and thanking Him for carrying you through them. In the meantime love every single moment with our girl and know that my love is with you every step of the way. Praying for Peace & Comfort again today as I prayed for last night...loving the 3 of you so...Momma

  3. I am surrounding You Somer Sean and Avie with Love and Light.