Glenn head

30 July 2015

Those swollen Glenn heads. What I wouldn't do to go back in time three years to this very day when our lives were so full of hope I could burst. Three years ago today Hayden had his second of three life saving surgeries- the Glenn. In the heart world, we have a term for when our warriors go into one of these surgeries- we all pull together and root each other on in hopes that child will 'ROCK THE GLENN' (or Norwood or Fontan). Let it be known, Hayden rocked it harder and better than anyone. But no Glenn baby can escape that damn Glenn head- that swollen head and those terribly painful (so we are told) headaches. Looking at this photo now with his swollen little head I can't even take how much he looks just like my sleeping Hudson.
Hayden rocked the Glenn so well we were going home in 6 days total- and that included an extra procedure that had us staying an extra day. So 5 days of recovery for an open heart surgery. Still takes my breath away when I think about it. And the hope- that wonderful feeling of hope that was filling every inch of my body all the way from the bottoms of my feet to the tips of my fingers. This week we were told Hayden practically cured his own brain injury that he suffered while recovering from his Norwood. The neurologist wouldn't use those words of course- but he did say- verbatim- 'I no longer see the damage we saw at his last MRI in March.' And yes- I remember those exact words because once I figured out what he really was trying to tell us, I fell to my knees in the most joyful and hopeful tears I think exist. You never forget moments like that.
Hayden had his Glenn July 30th- and we went home August 4th. The week we were home we spent indoors- out of the hot sun- and letting him recover a little more before introducing him to the world. I am sure I've written about this before- maybe even last year- but we had so many plans already in place for our sweet warrior Hayden. In two weeks we were supposed to be going to my hometown and introducing him to all of our extended family and friends there. A month after that Hayden was going to have a huge celebration at the beach for his baptism- he'd already been baptized in the privacy of our pod space the morning of his Norwood- but his godparents weren't able to be there and neither was our family and friends so we had a beautiful plan for this celebration and I was loving finally planning something more than doctor appointments or pre-op visits for Hayden. Just 12 days after we went home from the Glenn, Hayden died- and instead of planning a celebration, I was planning a funeral. I know some people will think or even have the nerve to say 'but you were still celebrating his life'. No. Please don't say that. A funeral is no way to celebrate a five month olds life.

So this time of year is always incredibly and indescribably difficult for me. This week three years ago my heart, mind and body were so completely full of happiness, hope and peace for what our lives were headed for next. And now every year today starts a constant pain again of what was to come for Hayden and our family over the next two weeks- and then of course ultimately the rest of our lives.

I woke up this morning thinking of Hayden on this day three years ago and of course cried at the thought of him flying through this surgery and how I just couldn't wait to move forward in our lives together as a family. If only we would have made it to the Fontan so you could've rocked that too. Where would we be always comes back to what would life be like now with you still in it...

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