Saturday, March 18, 2006

3/18/06 - a little late

He is beautiful when he's asleep - but when he opens his eyes, even when they're only little sleepy slits, it takes my breath.

I wish I were a better photographer so you could all appreciate how gorgeous and strong and amazing he is. I didn't ever think about it being possible to feel admiration toward an infant, but him... Well, his strength and will and determination are admirable. He's amazing, and that's all I can say. He has been through so much, and will go through so much more, and he just keeps fighting to get better no matter what has gone wrong for him. He's a lesson in spirit and resolve. Someday, (someday not soon enough) he will come home, and I hope I can do right by him. He deserves so much.

As you can see in the picture, this picture that looks like so many pictures from the last month, his eyes are open and he's trying to take a look around through the fentanyl haze. There is little change in his routine, save for the open eyes and the weaning of some blood pressure meds and sedatives. But he's breathing well, which is my first concern right now, his numbers all look good, he's eating a tiny bit, the colostomy seems to be working, he's peeing like a champ, and he's been calm for days. Calm without the heavy sedation. So things are looking good.

They'll discuss the options of extubation and/or scheduling a heart cath in the weekly consultation on Monday morning, and until then, we take pride in the small things, because for him, the small things are work.

He's been there for 26 days. In ways it seems much longer than that, and in ways it doesn't seem like it could possibly have been nearly four weeks already. I'm glad I've been making these posts, because already things from 2 weeks ago are getting a little blurry. I think it's the way the brain is designed, to let things get sort of fuzzy to detract from the mental weight and stress of it. That's OK too, I'll concentrate on today, maybe tomorrow too if things are going well, and be glad we've even made it through the last 3 1/2 weeks. The details are recorded if I feel the need to remind myself.

This morning I received an email from a mother I mentioned in an earlier post - the mother of the 3 year old with such long legs. He was ADORABLE. Well, they went home and he's doing very well. I'm looking forward to being able to email her and telling her that Nova has gone home. Patience isn't my virtue, but I'm trying!

I got to meet Mika from the Maeghan and Heidi Heart Foundation tonight. I love her even more than before. What an amazing woman. And, she brought presents - she brought Foundation T-shirts for us. She didn't know our sizes so she brought a small, a medium and a large for Scott and I, and she brought one for Nova too. It's a size 2-4 youth, lol, he'll swim in it, but I intend to put it on him just as soon as he can wear clothes!

And I do believe that's about all for today. I'm tired, and still in a weird mood - I'm blaming it on PMS, without the P. *sigh* It's been over a year since I dealt with this brand of hormones. You wouldn't think you'd have to remember what it's like to be moody and achy lol.

I think I'll have a chocolate cupcake before bed ;)


  1. You have so much to be thankful for, hon, and every precious day that you get with your little one is a gift. I told ya he's a fighter. I mean, look at his mommy. I couldn't be more proud than I am at this moment to have such a wonderful person such as you in my life. You have blessed so many people and I hope, that, in just some small way, that I have blessed yours. *hug*

  2. What a beautiful boy. He is full of scrap and vineger. You can see it in his face. Not a moment is lost on him. Every detail is the hinge for him. The world is bending in each of the moments of his 26, so far, days, and he is working each of them. Making the universe pliable.

    As you said, no matter what, he is staying here, fighting to keep on our side of this totality, to continue to bless us with the truth he exhales, with the books he conveys with his every breath.

    Welcome to life, Nova. Thank you for coming to help us work this out.

    I hope to one day shake your hand, good sir.


  3. Mary~
    Your poetry, your friendship, your prayers... of course I count you as a blessing in my life!


    scrap and vinegar indeed! He's a fighter, stronger than most adults and he's only 3 1/2 months old and been through hell these last 4 weeks, and he just keeps on keepin' on.

    I think we definitely SHOULD learn something from him eh?