Fearing the Glenn

We made it through Wyatts birth, his 6 day NICU stay, his Norwood, and his 21 day PICU stay. It was terrifying, heartbreaking, difficult, and at times just plain awful, but we made it. We came home, we adjusted to life as a family of 4. I got used to being a stay at home mom, to taking care of not only a 6 year old, but an infant with special needs as well. While we were in the hospital, it all seemed so normal. And now that we're home, and have been for a while, being home seems normal and the thought of being in the hospital seems very foreign.

And now, I am faced with the reality that Wyatt's Glenn procedure (and heart cath) are just around the corner. The reality that I am going to have to take my baby back to the hospital, give informed consent all over again, wait through the surgery, see him afterwards, see him hurt, see his tubes, know that he is uncomfortable and that there is nothing I can do to make it better. When he had his Norwood, beyond the situation just being scary, it was twice as scary to me because my baby was only 6 days old. He was so tiny and so fragile, and so perfect. And now, in thinking about the Glenn, it's not only scary, but twice as scary because now I fully know my baby, and he knows me. Now, he knows the sounds of our voices, and what we look like. He smiles and coo's at us. He sleeps in my arms, he spits up on my shoulder. We have now created that bond that a parent has with their baby. And I think because of this bond, because he will be 4 months old at the time, because he will be doing this all over again, I am petrified.

I know that the Glenn gets us out of a really scary stage in Wyatt's progression. That it is imperative he have this operation. But damned if I want to go through this all again, and moreso, damned if i want to see my baby go through it all again.

Wyatt is doing so well at home, and at each doctors appointment, it is really easy to forget that this journey is far from over. Even with his scars, and the extra reminder each time I see my own chest, it's easy to forget. When I see pictures of other babies, I immediately look for their scar, as if every baby is supposed to have one. It's just normal to me now, and I don't even notice it a lot of the time. It's too easy to forget that in 2 months time, we will be back at P/SL, back in the PICU, back into dealing with all the hurdles Wyatt has to overcome after another open heart surgery. It's easy to forget that HLHS is a bastard.

As the time gets nearer, my fear gets larger. Every time I think about it, I am that much closer to instantly breaking down into tears. With Christmas right around the corner I am trying to focus on my guys, and make sure that we have an amazing Christmas, and make sure that I am thankful that we are home, together, for Wyatt's first Christmas.

But it's getting harder not to dwell on the fact that this will never be over. That Wyatt will never be "normal", he'll never have a healthy heart like he was supposed to. I love that little guy so much it hurts, and I am thankful that we've come this far, and that he's doing so well, and that he is such a fighter for the long road ahead.

And just for a smile, here is a picture from today of the little stinker. I think this is what he thinks about HLHS ;-)