Fontan Day 12:

1:47 PM Mary Clare’s fluid levels from both chest tubes have been decreasing every single day.  Our cardiologist told us to expect a spike, trying not to get us too terribly excited and hopeful, but so far, little miss has proven him wrong!  She had a chest x-ray this morning and a visit to the Atrium and after a cheese pizza lunch is now soundly sleeping in her new Ariel PJ’s from Ms. Rebecca.  I’m sitting in our room with the constant bubbling sound escaping from her fluid collection chambers and Mel’s on his phone talking “city” stuff.  It’s a relaxing day.  We ordered take-out from a great sandwich shop downtown, Bubba Slyes Deli, and treated a few of our amazing nurses.  Later, we’ll head back to the Atrium, I’m sure and continue with our low-key day.

5:45 PM Guess what’s missing…

One chest tube, pacing wires and a central IV!

7:00 PM While I’m thrilled that my baby girl is one step closer to home, my heart aches at the thought of what she went through today to make that happen.  She is the strongest little fighter I know.  I’ve always been with her through every medical procedure that I’ve been able to attend.  Even when I’ve been asked to step aside, I always let them know that I can handle it and I always stay.  I’ve explained to Mel that if she has to endure it, I feel the very least I can do is be there with her.  Mary Clare likes to know what’s going on.  I try to explain beforehand what’s going to happen and how.  She’s a smart little one and you can’t fool her, so I’ve always stayed.

Today, I was told that she would do much better without me there.  Ultimately, it was my call, but I wanted to do what was best for her so let her go without me for the first time. MC went with her nurses and met the team that would remove her central IV line in her neck, her pacing wires and one chest tube.  She was given Morphine and the procedure began in the Procedure Room down the hall on our unit.  As soon as the door shut, I wished I was there with her.  I felt like I was being a coward.  I hated it.  As I sat in our “No Boys Allowed” room with Mel in silence, listening to our baby girl scream, so many thoughts raced through my mind.  Why am I allowing her endure all of this?  Why should a three-year-old know this kind of pain?  And if I’m being totally honest, did we really make the right decision to have the three staged surgeries?  It was our decision to take the risk and our decision to put her through this.  I was angry at myself that it was her on the table at that moment and not me.  If I could exchange hearts with her, I would do it in a moment, without a doubt.

And the inevitable question, what’s in her future?

I try not to go there.  I try to appreciate every single moment that we have, but I’m a mother.  Every mother dreams of her daughter’s first date, magical wedding day and seeing her become a mother.  Dare I wish for these moments for her?

It’s at times like these that I have to stop and be thankful for the moments we have shared.  We have  so many magical memories already and for that I am forever grateful. I can only hope and pray that she doesn’t remember all of this, one small window in her third year of life.  None of us are promised tomorrow, so yes, I will wish sparkly pink prom dresses and a beautiful wedding gown and babies for her.  I will laugh at her eye rolls and pappi obsession and love of all things Pinkalicious right now.  I will embrace her special half heart and thank God that he blessed me with such a miracle.  I will thank God for today.

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