5.31.2012

Barely even a drop

I wonder, sometimes, what happened to Gabes heart when it was forming at 7 weeks pregnant. Morning sickness hadn't set in yet, but soon it would. His heart was beating already, I had heard his heart beat at 7 weeks pregnant for the first time through the doppler (usually it is too early to detect it, but I was lucky). It sounded normal to me, similar to Judahs. A sweet 'thud thud' noise that reminded me of a galloping horse (which I have been told is a sign it's a boy ;).)

But somewhere, when his heart was pumping barely even a drop of fluid, it diverted the wrong direction and formed incorrectly, leaving his right side of his heart do do 90 percent of the work, and his left side to do nearly none of it. Of course, at that point, I was helping Gabe sustain his life, but his heart was working too.

Even if it wasn't working correctly, it was keeping him alive. Beating to the rhythm of it's own drum, I suppose. Though it wasn't formed properly, it was doing the job it needed to to grow my little guy to a perfect little birthweight. Perfectly formed fingers, toes, features. Perfectly formed everything, except this little heart of his. But his heart didn't know it wasn't doing the right thing. It didn't know that the blood flow wouldn't work in the long term. All his little heart knew is that it was doing the job, the only job it needed to do, as well as it could.

And I would say it was pretty darn well.

When he was born, he was so pink. No one would have known there was something to be said about his little heart not beating in a typical way. But I suppose, there is nothing typical about Gabe.

When I saw his little face, I knew I couldn't hold onto him for long, and I had to fight every single thought in my head and instinct that wanted to football hold him so that no one could lay a hand on him.

I held him for a beautiful second, in awe of his pinkness (Which I was told he might not have).

So now, during his third open heart surgery, I think of all the moments I was in awe of the perfection in this little boy who was born with an imperfect heart that kept on beating, even when the odds were against it.

Because that's the way God made my son. A unique, one of a kind, perfect blend of imperfection.

And there is something to be said for that.

5.30.2012

Holding my sweet Gabe.

As I sat today, holding my son, I couldn't help but feel an immense amount of pain.

The hard part about weaning off of the medication for anti-depressants... is that I can once again feel things deeply... But it is also the most beautiful part.

For the past months, I've been in a fog- able to avoid the painful feeling when I think of the moments that I have been missing out on with Gabe in the hospital. But now that the drugs are out of my system, nearly entirely- there is no covering up what I should have been dealing with this whole time.

I hold my son in my arms. His body is stiff, limp, but warm. His hair has been washed today, something that he hasn't had done often enough since his surgery two months ago. His eyes are partially open, but there is no life in them, they stare forward into his eyelids and a thick goop of eye protectant is in them to keep them from being dry, or worse yet, getting infected.

I hold his hand in mine, kissing his tiny fingers which are no longer swollen and finally resemble the little fingers I have held so many times in mine. There are two bumps of dried blood on his hand from where he has had attempted IV's. I turn his hand over to inspect the other side, as I always do, and see a painful looking bruise with skin that is slightly torn. I immediately ask why this is there, but of course I know it's from another line that had gone bad. His body has lost most of the fluid that he had retained once, but his body is one giant bruise still, from the EPI he had administered a few days ago when he nearly crashed again. EPI is a powerful drug, but it is also difficult on the tissue. His chest and arms are covered in a bruise, and worse yet they are hard.

Hard like his cheeks have been for the past weeks. It's called a blood bruise, and it's almost all over his entire body... It feels like the bone has expanded through the tissue, like he is solid... It feels painful. I know he doesn't feel pain, he is so sedated and paralyzed that there is no way he could, but I remember what this bruise is like. Nicholas had a bruise on his knee similar to this that lasted almost a year. Blood bruises are terrible.

I stroke his hair over and over and whisper in his ear how much love him. I don't want to cry, I hate crying in front of anyone, but especially medical people who feel the need to reassure you- or to avoid you entirely.

But the tears flow out silently. I feel so helpless, as I have for much of this journey. They fall all over my arms and I can't stop them. I try to sniff them back, to stop myself, but I am also so glad that I remember... I remember finally how much I truly do miss him. And that is a blessing for me.

I lean down and put my forehead against Gabe's tiny forehead and tears continue, so I start to sing to him the song I have sang often to both of my boys. "Oh, how He loves us, oh, how He loves us... How He loves us, oh..." And sniffle some more.

I hope that Gabe can somehow feel me here. That he still wants to fight for life.. for us. But I can't help but wonder if he will make it out of the next surgery. He doesn't look ready for a surgery. He doesn't look ready for much of anything, really.. But I know it is his only chance to wake up again. And win or lose, it needs to happen.

Dr. Marx comes in and reassures me. "I am so sorry, I talked to Nick about the bi-ventricular repair, but his ventricle just hasn't grown as much as it appeared to have before. We are going to fix him up and get him on track." I nod, but avoid his eyes because I hate the idea that my eye makeup is scattered down my face- even though I've managed to suppress the tears. "It's been too long." He says. This chokes me up and I have to force the tears back down.

"He turned 9 months old a couple of days ago, you know. We brought him in when he was seven- (choke back another tear)- months old." He pats me gently on the back.

"We will get him on track." He says.

"I hope so." I say.

It's hard to say anything, really, because the reality is that all I want to do is to scoop Gabe up and lay him on my chest like I always have before this. To hold him close to me, and to sing to him. To rock him, to bounce him. Anything he wanted, I would do.

I talk to the nurse for quite a while after this, telling her all about Gabe, as my memories are no longer fuzzy but clear and fresh. I lay my hand on his heart and feel it beating.

"He just beams at Judah, every time he looks at him." I say. "He stares at us, almost like he is concentrating on something important, but Judah makes him grin... The sweetest grin I have ever seen." I say. And it's true.

Judah's grin is so beautiful, contagious. But Gabe's grin (and I will deny I ever said this or posted it) is lifechanging. It is so beautiful and sweet- like the taste of freshly plucked honeysuckles. Gabe's grin, is enchanting.

And tears roll down my cheeks again.

What I would give for one of those grins. Or even for him to look at me, with his sparkly grey eyes.

Though the pain is sharper, the memories are too. And I love that part of this medicine wean.

Tomorrow is terrifying, but so hopeful. I know that God has Gabe in the palm of his hands, but I would like it very much if God wouldn't mind letting me hold onto Gabe for him for a while.

Gabe, a little touch of heaven in our earth.

I brush his hair back and kiss his forehead. I wish I could rock him, but the amount of tubes and hoses and IV's attached to him makes it very much impossible. So I just put my hand on his heart again and memorize the feeling of that moment, the feeling of his heart beating on my fingertips, his warmth on my hand... and knowing that his heart is beating strongly, fighting hard.

5.27.2012

Little family minus 1!






Photos of Gabe! :)


Gabe and Mommy right before we left Seattle- Gabe wore his first pair of sunglasses! So cute!






Three of the girls from my pregnancy group came to meet Gabe in Seattle!


Wrapped up in a blankie that Aunt Kay made for him!


Trying on Hats! (You will see a lot of photos like this!)




Gabe and Hannah held hands and she sucked on his hand quite a bit! They were friends from the beginning!




Gabe loves his toys- non discriminatory!


More hat wearing!


Gabe in his letterman's jacket!


Sleepy little baby!



Gabe has the cutest buns on the planet!





Talking to Momma!


Happy little lad!



Gabe loves toys!



our first few days in Boston, Gabe and I trying out the local food!


He is a great dinner date!



Gabe's first hospitalization in Boston.



Judah picked Gabe out a puppy named spot. Gabe and Spot really bonded before Judah decided he wasn't actually for Gabe. 




On his way home for the hospital in his warm weather gear!


More hats!




This is where he was found when Nick went to pick him up from the hospital, the nurses had wheeled him out to play with him while they did their paperwork!





Gabe and Grandpa have a real connection!



This is the last picture we have of Gabe before his surgery, awake. Miss him so much.


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