unexpected

super uly 2 years old!

Just over two years ago, I was told that the baby I was carrying would probably not survive birth. If he lived, he was not expected to live long. The known facts were incomprehensible and frightening; the predictions were even worse. It was as though the child I’d been anticipating had been pulled from my gut and replaced with a nightmare.

But he did not die. He surprised everyone by living. Despite legitimate fears and worries about his challenges, he surprised everyone by being so remarkably alive.

Ulysses is TWO now, can you believe it? I cannot. He’s zonked out on my back as I type (the only way to eke out a non-car nap for this boy is to wear him, still.) and the truth is that I’m a few days late in writing here (I had wanted to post on his actual birthday) because I’ve been so occupied with LIVING with him. That’s mother-of-toddler speak for: I don’t have time to write about my kid because my kid takes up all of my time!

No ultrasound scan could have determined that I would have a baby with such spirit and vim. No blood test could have indicated that he would be a busy, inexhaustible rascal, getting into everything in a flash. It’s been two years of heartbreak and wonder, two years of not sleeping, two years of swallowing stress and collecting bills and learning so much! It’s been a freefall through dread and inadequacy, a mountain climb without any gear. It has been hard. It has been a lifetime and an instant. Only two years? Two years already? Yes.

I put together a photo story of Uly’s first two years. If you have about five minutes to spare, you might like to a peek into his life, our family’s life. You might think about Ulysses as that little guy with limb differences, or of that baby who had a couple of open heart surgeries, or maybe as the toddler who is learning to walk on prosthetic legs. Those things are true. But I hope you also think about his grin and his sparkle, his impishness and determination. I don’t call him Super Uly for nothing, you know!

The slideshow ends somewhat abruptly, but I like to think that it finishes with visual ellipses. It’s been a full two years, but his story is barely starting. . .

(i used songs on the slideshow that are part of my experience with ulysses, and are very evocative, for me, in that regard.)

Categories: amputation, open heart surgery, terrible prenatal prognosis, unexpected | Tags: | 27 Comments

these are the days of miracle and wonder (and don’t cry baby, don’t cry)

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Hey, it’s been a while. Last month kicked my ass.

There is no good time for your baby to have open heart surgery. It’s a scary, dreadful thing. But you do it because if you don’t do it, your baby will die. What would you do to keep your baby alive? Yes, YOUR baby. The one sleeping near you now. Or maybe the one who isn’t a baby anymore, but you remember that babyhood like it was yesterday. (Where did the time go?) You would do anything.

In the last month, Ulysses was sedated under general anesthesia four times. He’s been under general now about ten times total. It does not get easier. It might keep getting harder, in the way that everything we do is some kind of a dance with statistics. He was fine last time. But this time? Will he wake up? You always wonder. Even when the re-entry is rough -and for Uly, it always is- I want to cheer when his eyes open, even when they’re the panicked eyes of fear and disorientation. I put my lips right up in his ear and hum the same lulling hummy song I’ve hummed to all of my babies, trying to break through beyond the  drugs to where he is.

I guess I’m glad I didn’t know going into into it that last month would be so hard. You can’t plan for rare complications. Very few children develop post cardiac surgery wound infections. Among those who do, fewer still have the infection reach the bone. By the time his chest was re-opened, the infection had spread to his sternum, pulling the bone apart that had been split and wired closed just the week prior. His taciturn surgeon reiterated how much such an infection would have hurt. But I’m the mama. I knew my baby was hurting. I watched the clock and kept track of when morphine was due. It wasn’t even enough. I would have done anything.

So a few days,  a week at the most, turned into seventeen nights in the hospital. Seventeen nights of sleeping a couple of hours a night, in several minute increments. I overuse the word hard when describing this experience. I remember thinking about this when he had his amputation surgeries last November. I thought how hard that was but when I say  “hard” what does that even mean? How do you define this kind of hard? Is it the hard of letting my baby be carried off by a stranger? Is it the hard of pacing hallways while I wait for an update from the operating room? Is it the hard of standing on my tippy toes at his bedside, leaning over and nursing him awkwardly for hours at a time, because it’s the only thing that comforts him a little? It’s emotionally hard but it’s also physically grueling. It’s a vaporous, worried hard. It’s a tangible, muscle aching, exhausted hard.

It’s not home like usual yet. We have a nurse who comes to our house twice a week to change the dressing on his wound vac. Oh yeah, Ulysses was discharged with a wound vac. Don’t worry if you don’t know what that is; a few weeks ago, I’d never heard of one either. It’s basically a suction machine that is attached to my son’s chest by a four foot tube. His wound his filled with foam which is taped up with a special filmy tape which is adhered to a tube which extends to a small box that provides a constant, 24/7 gentle suction. It’s just as cumbersome as it sounds and I kind of hate the thing, but I can’t deny it’s working. Every dressing change finds his wound remarkably smaller. This technology didn’t exist that long ago. A lot of infected tissue was removed from his chest. The alternative to the wound vac would be months and months of messy dressing changes, slow healing, more risk. He’s going to be left with one heck of a scar.

The whole household is in the throes of an exaggerated kind of cabin fever and general out of sort-ness. I am not sure how we’ll get everything to rights again, and I don’t even know how much longer until Ulysses is free from devices and medication. Another month?

But we’re home. And we survived. And his heart surgery was successful and I caught the ensuing infection quickly enough that it didn’t spread to his bloodstream, and my other children deserve trophies for being so patient and adaptable, and we aren’t bankrupt yet. I have more to write about his hospitalization, things I learned and how I’ve changed, but maybe I’ll save that for the book. (I’m not really writing a book. but that sounds better than “life has been so stripped down to the barest essentials that writing was a luxury I couldn’t afford. and now I’m trying to get back into the habit. but I’m depleted in every way and even this tiny quiet blog overwhelms me.”)

(smiling Uly above was still in the hospital. I made small updates via instagram all last month, so you’ve probably seen that picture already. blog title from the chorus of The Boy In The Bubble. I believe that there are some things that everybody should be able to agree on. Some kind of great, equalizing truths of humanity like Be Kind To Others and Paul Simon’s Graceland. my sons and I had a dance party to that album this afternoon and I’ve had all the songs in my brain the rest of the day. for weeks, Uly was hurting so much he couldn’t even sit unsupported. He still hurts some. He stops himself from coughing and is careful with his movements. but he was dancing today. he is a wonder.)

Categories: life, open heart surgery, Super Uly, unexpected, wound vac | 5 Comments

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