Heavy heavy heart

I learned last night that another HLHS baby has gained his wings.  Kian Moss fought for every day that he was present on this earth. When I pull up his blog and see that radiant smile, I simply cannot believe he is not here anymore.  I spent a great deal of yesterday vacillating between the unfairness of it all, feeling guilty and feeling the pain, but not actually knowing one ounce of it.  It is my biggest fear no doubt and as I sat rocking my own hlhs son in the hospital rocking chair (yes we are in the hospital) I felt like I couldn't breathe. Couldn't hold him enough. Smell him enough. Squeeze him enough.
This entire unit is full. Full of sick cardiac babies and yet I know there will never be answers, even though my heart seeks them at a time like this.

I have decided that chubby cheeks, bright eyes and radiant smiles are all pre reqs for hlhs. Every baby that I meet with hlhs has these qualities and they tell their story through features instead of words.  Some days, I have decided words would never be enough anyway.


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Paxton is back in the hospital. He came down with a virus that has really kicked his butt.  We were admitted Tuesday night and were hoping to make it a short stay, but the virus has gotten worse since we have been here. Clearly I brought him in just as it was beginning and it still had to run it's course.  He started with 103 fever and has since gained a full body rash with welt like blisters all over.  He is on iv fluids and antibiotics because he is refusing to eat or drink.  While his fever has broken we have set up shop here until we see that his symptoms are subsiding instead of worsening.  Typically I am in this mad rush to get the hell out of here and while I am still desperate to be home with my other two boys, I remind myself of how much worse it could be and to relish all of the moments.  Even ones we would just assume not have such as sitting in the hospital.

Or having to say good bye to one of the favorite people in my life and explain to him as he cupped my face in his hands saying "but I want you Mommy" that I promise I would be home soon. All whilst not crying my face off.

And when he was out of sight,  I lost it. I miss them so deeply when I can't be with them.  I stood in the tunnel looking out the window as they drove under sobbing and waving like a lost puppy. It was a long walk back to the room. The big, hospital hallways seemed extra large and empty with my meager self walking through them. I, of course, pulled it together by the time I opened the door to Paxtons room, because it's what we do here. Because it could be so much worse...

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It's still hlhs awareness week and before I had to jump ship and head to St. Pete I had put together a slide show. I would  like to share it with you all. It meant so much when I put it together, but man if it doesn't mean the world to me now as I sit here mourning the loss of one of Paxtons heart brothers.

(turn off blog music at the bottom so you can hear slideshow)

This journey never ceases to rock me to my core...

"I never feel more alive than when I am in great pain, struggling against insurmountable odds and untold adversity.  Hardship? Suffering? Bring it! I've said it before and I've come to believe it: there is magic in misery."

~Dean Karnazes

Love

~J