Echo of Hope

Action stations. Actions stations. Set condition one throughout the ship. This is not a drill.

When we last left our hero, he had felled the Iron Sheik, and just begun his reign as World Wrestling Federation heavyweight champion. Bells rang. Ewoks rejoyced.

Ari came home.

On Tuesday, March 13, Erica and I left the hospital and headed to Stow with our very small man and his very big gold belt.

Over the last 11 days, we’ve been able to go from wondering what life with Ari would be like to living it.

And live it we have.

Ari’s taken us for walks around the neighborhood, entertained visitors, and charmed his parents with his excellent behavior and eating habits.

Hah!

Okay, his behavior has been great. He sleeps just fine in his crib and doesn’t complain much. We’ve heard that babies that spend a good stint in the ICU, especially those with professional wrestling experience, get used to noise and being constantly visited…left alone…visited…left alone sometimes aren’t fazed by much when they get home.

On the other hand, meal time has been a bit more work. And when I say work, I don’t mean answering the phones and making copies kind of work, I mean digging trenches with teaspoons and internships at the septic tank company kind of work.

Up until today, his breast milk has been fortified to the point where his nurse practitioner described it as, “Imagine eating two Big Mac’s and a chocolate frappe every 3 hours.” Good morning Morgan Spurlock – back to it.

Why so high with the calories? He’s breathing too hard still, especially at meal time, so he burns calories like Rocky fighting Drago.

This makes him, well, fussy isn’t the right word.

Fortunately, today we backed off calories to more like one Big Mac and a small fro yo per meal, so perhaps his stomach will settle down a bit.

He doesn’t like bath time, changing time, or medication time, and neither do we. Up to 4 syringes in the mouth 4 times a day. Fun times.

Oh, and the pharmacy called back before filling his prescriptions to ask us what flavor we wanted in his Spironolactone. What would you tell the pharmacist? Quick – don’t read on – what are the first things that come to mind?

Here’s what came to me: Cool Ranch Dorito, black truffle, Jim Beam, please select an amuse bouche that goes with the main course, what does Ferran Adria’s son like?, and jelly…KY if you have it.

Since these people are the only pharmacists in the area that will compound the medicine he needs, we played it safe and asked what an infant would like. Marshmallow Spironolactone and apple Omeprazole it is!

Back to our star.

Just like his mommy, he has his independent streak. And just like daddy, he has wide feet. (Get ready for a lifetime at the New Balance outlet with all the other white kids, kid.)

It’s been a trip getting to know him. He likes his monkey binky, swinging in the swing (which is better, at this point, than in the bars), and looking around at all the sights in his new play area.

Most of all, he likes his mommy, and doesn’t seem to be quite himself when she’s not around.

In all sincerity, it’s been a great 11 days.

But at the same time we’ve been enjoying our week the ranch, in a dark corner of the universe, the Emperor and Darth regrouped and plotted.

Erica and I knew that they’d be doing this – never underestimate the power of dark side and all – but Ari is just about to get blindsided.

This won’t be the last time, either. It’s all very Psalm 35:15. (That’s what you were thinking, too, right?)

Anyhow, we narrowly averted the cath lab on the way out the door last week, but it was more like furlough than parole or outright release. We knew we’d be going home for a cup of coffee, but as we were reminded (though we didn’t need to be) by the medical team this morning, we’re in high-action, high-alert mode with Ari and will be for the foreseeable future.

Overall, his cardiac function looks great for his condition. That doesn’t mean it’s “great,” it’s “great for his condition.” Not pretty. More like the prettiest girl at the ugly dance. At least as far as the heart goes.

At our last echo, the gradient across the valve was 70. For those of you who left your modified Bernoulli equation (Gradient = 4(velocity)² mmHg) practice sheet with your Psalm 35:15 notes, here’s all you need to know:

Comforting label to that greater than 70 number, isn’t it.

We didn’t go to the cath lab right away last time because his left ventricle function was improving, and he looked good physically. They doctors wanted to see if anything else would change in his heart, and see how well he could eat and gain weight, without immediate intervention.

11 days later, the gradient across the valve is still 70 and his left ventricle is still the belle of the ugly ball. The high pressure in his left ventricle, however, has predictable consequences such as raising pressure in his right ventricle, messing with his atrial pressures, and more. Nothing surprising, but without further improvement naturally, it’s time to go back in for his 4^th balloon (two before birth, one at 14 hours old, and one coming up next week).

With the various heart surgeries he’s slated to have, this balloon procedure is not that invasive. Then again, exactly how non-invasive is a surgery that will be performed by the Chief of Invasive Cardiology? Don’t think I’ve ever seen a more disconcerting title than that one.

Perhaps I can convince Erica to change her title at the company when she gets back to Vice President of Invasive Marketing.

For the cath, they go in through a vein in his leg, thread it up to his heart, slide into his aortic valve, and inflate a balloon gently, multiple times, to open it up. Why gently? They can – and have – blown values to shreds. Two cardiology chiefs – invasive and chief of chiefs – will be performing the surgery in part because, as our cardiologist (a chief in his own right) said this morning, “You break it, you buy it.” Meaning, if you blow the valve, you have to fix it, and that means transplants and replacements.

Bye-bye non invasive.

In any case, surgery next week. Until then, back to living in the new normal.

Condition one is set. All decks report ready for action.