Sammy’s been, shall we say, backed up a bit. Like, since Thursday morning. And while he was intrigued by the taste of the prune juice, it didn’t quite do the trick. I mentioned our problem to a friend, and since we were headed to the nursery together anyway, she knowingly slipped me some glycerin suppositories from her little girl’s stash.
Now I’m all about doing what a mama’s gotta do, but the idea of sticking this clear bullet up my son’s butt – not my idea of a lazy Sunday afternoon. Jay did the honors the first time, but Sammy – god bless his intestinal track – shot it back out with enough gas to make the cats leave the room.
So upstairs we went to put in another. I figured I should step up and do the mama thing and get the painful poop out of my son’s belly. I can’t say I’ve ever done the suppository thing before, so Jay (who had two much younger siblings and much more experience with babies than I) coached me: “Keep pushing it until you feel some resistance…”
Oh, I felt resistance alright. FOUR DAYS WORTH OF IT, with a nice little chunk of it on my hand. Out it came… and it kept coming. And coming. In awful waves of putrid swamp poo.
Ick.
After our bath, we have a happy, smiley Sammy again, who now has room to put even MORE food in his belly. And we – we’re now armed with a nice little baggie of glycerin goodness.
Ahhh, the things we do for our children.

I should just put “knock on wood” after each of the following sentences:
Jay is relaxed enough to play guitar for the first time in months.
Alisa and my friend Deb each commented on how different I sound on the phone now, how I sound like myself again, how I sound like a weight has been lifted.
I’m wearing one of my happy hippie Falcon Ridge skirts and almost, almost wore pigtails with it.
We went on a bit of a shopping spree, and for the first time in forever, I didn’t worry about how much we were spending. Did it make us happy right now? Yes. Right now is what matters now. I’m working hard to remember that.
Sammy is chowing down like a champ. Prior to surgery, he was taking in about 24 ounces a day. Today? He’s on track to break 30. It seems like every time we turn around, he wants to eat. Hopefully he’ll put back on the weight he lost in the hospital and keep cruising towards doubling his weight by the six month mark.
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This morning I went to pick up Sammy’s meds (lasix, zantac, captopril). The pharmacist, a woman in her 50s, took a keen interest in Sammy and his condition – enough so that she came out from behind the counter to see him while I got his bottle ready (I told you, he’s ALWAYS eating!). She kept commenting how amazing it was, what they could do these days, all the medical advancements. Then she started talking about her kids, and began to tell me about her son. He was born twenty years ago with Transposition of the Great Arteries (TGA), something not all too uncommon in the heart-parent world. Unfortunately, surgery couldn’t save him. I tried not to cry as she was telling me about him. As soon as I got back into the car, I called my friend Alicen, whose little girl Ellie was also born with HLHS, and left this tearful message (she must think I’m crazy!) about how grateful I am that our children were born now and how lucky we are and how happy I am that they’re in our lives.
That’s how I’ve been all day… I feel like I’m coming out of a fog and can let down my guard a little for the first time in months. Sure, we have another surgery when he’s between two and three, but we have at least a good while (see what I mean about knocking on wood?) before we need to start the worry-path again. For now, (knock on wood) we can simply enjoy our little boy, who laughs when you nibble his feet, kiss his belly or even simply just smile in his direction.
I keep saying it – someone or something figured that we had gotten a rough deal with Sammy’s heart, so to make up for it, they gave us the most amazing little boy with the most wonderful personality. He truly is the most fantastic little being I’ve ever met.

And we’re headed home!

Yup, we’re still here. Rumor has it, though, that we’ll be headed home tomorrow as long as his morning xray & bloodwork all check out okay. He’s definitely getting back to his old self, playing, squirming and laughing up a storm. We’ve also had a couple of firsts since we’ve been here.

Sammy sat up on his own! I took him to the playroom, and sure, he only maintained his balance for fifteen seconds or so, but he’s getting there!
Even better? This:

We had planned for a little “celebration” before we left. Up until now, Sammy’s only ever had breastmilk, formula & rice cereal. Since he’s taken to latching on to the bottom of our Starbucks cups and sucking off the water, reaching for whatever we’re eating and getting pissed if we don’t give him any, we thought we’d celebrate making it through the surgery with his first taste of “real” food – BANANAS!

There’s a little video of him eating here. It’s pretty dark and hard to see, but we only had our regular digital camera with us, so it had to do. He couldn’t get enough of the bananas – he would grab for the spoon and shove it in his mouth. When we would come at him with another spoonful, he’d go full-body excited – arms and legs kicking and waving, eyes really big, and little excited sounds coming from his mouth. He LOVED eating those nanners!
So while we were really disappointed we didn’t get to go home today, it turned out to be not all that bad.
(Edited: ARGH. Flickr SUCKS right now. If you don’t see the pictures, try again later, maybe?)

Still truckin’ on along. Sammy’s feeling and feeding much better. They’re going to remove the pacing wires today, and they’ve started the discharge routine – xray, blood workup and EKG this morning, echo likely tomorrow morning. The only thing really keeping us here at this point is the dosing on his captopril (for his blood pressure). Once they figure that out, we should be heading home! We’re still hoping for tomorrow, but like I’ve said – we’ve learned not to get ahead of ourselves around here. As long as he keeps going as well as he has been, we’re happy. One day at a time.
Even better? Our surgeon and our cardiologist had a meeting of the minds and declared that the heart rhythym/heart rate issue is NO LONGER AN ISSUE. Sammy’s been staying in the 90s – both awake and asleep – and keeping a nice sinus rhythym. Clearly it’s something they’ll monitor over the coming months and years, but for now? We’re good to go!
We got the okay from the nurse to scoop Sammy up and take him off the floor. So we’re going to grab some lunch and take him outside into the courtyard for some much needed sunshine and fresh air – all together, as a family. Woo hoo!

And we have achieved step-down!
We’re in a room all by ourselves, which means we can pick up Sammy all we want, since he no longer has any lines in, just surface monitors. We can even take him for a walk around the floor if we want! Sammy’s perked up considerably, and is happily playing with his rings and toys in his crib. If everything goes as smoothly as it has the past two days (knock on wood!), we could be home on Wednesday. Knock on wood.
And by the way, is this not the cutest kid in the world? Ok, I know, the universe, but I didn’t want to seem cocky about it. Happy five-month birthday, little man. We love you more than anything.

He’s eyein’ that door…
So Sammy is LINE FREE! They took out the arterial line and the atrial line just a few moments ago. I got to skip around the floor with him, showing him off to all the nurses and singing, “We’re goin’ for a walk! We’re goin’ for a walk!”
He’s still got the pacer wires in, and will when we go to the step-down floor – WHICH SHOULD BE TODAY! His heartrate stayed in the 90s last night… now, in all fairness, the kid woke up every two hours screaming his sweet little head off, so he never really got into a deep sleep, but they’ll continue to monitor things in step-down anyway.
Because, oh yeah – did I tell you? – we should be going to step-down today.
Keep those prayers and wood-knockin’ a’coming. It’s doing good things!
(Edited: The head cardiologist just came in to take a look at him and to tell us – TO THE FLOOR WE GO!!!!)

So we’re still trucking along. His heartrate is staying in the 70-80-90 range, which is making us all happy. I asked his cardiologist – if we didn’t have the heartrate concern – based on his recovery from the Glenn procedure alone, would we be in step-down by now? He said we would be, which means that he’s recovered nicely from the surgery. Yay!
His cardiologist also said that he wouldn’t do a pacemaker unless it was absolutely, absolutely necessary, and that he’d rather watch him for a while to make sure the heartrate wasn’t going to be an issue. Apparently, once someone’s got a pacer in, it’s pretty much a pacer-for-life deal, so he doesn’t take a decision like this lightly. His surgeon agrees… so while we’re not out of the pacemaker woods yet, we’re a few steps back from having one put in than we were a day or two ago. Yay #2!
AND… if Sammy continues with these same numbers through the night and early morning, we could be moved to step-down tomorrow evening. Yay #3!!!
AND… in a bit of normalcy, Sammy had a complete blowout with some of the nastiest, nastiest poop. While I was holding him. BLECH. So he got a bath, which was much needed. We also got to hold him quite a bit today, which was really, really nice. He’s talking a bit more now, too – working his way back to our little boy.
Knock on wood. Again, for good luck. And again for not tempting the fates by wishing for good luck. Hell, just spend the next few minutes knocking on wood, okay? Thanks.

Hi guys.
Sammy’s still hanging in there. He had a few fits last night where he’s clearly VERY unhappy, which is uncharacteristic for him, but in all fairness, the kid just had open heart surgery not even five days ago. On the other hand, we’ve had a lot more playtime out of him, and a lot more smiling, too. High and lows – but they’re his highs and lows – not morphine’s, not any other medication’s… alllll Sammy.
They stopped the isuprel, which was keeping his lungs from spasming and keeping his heartrate elevated. They also took him off the pacer, so his heartrate now is all his own. The electrophysiologist came in to look him over this morning and started tossing around the real possibility of a pacemaker, at which point the head cardiologist (whom we LOVELOVELOVE) popped his head in and said, “Sammy will tell us what he needs.” Even Sammy’s surgeon said that while being in the 60s isn’t optimal, he’s fine with it as long as it only happens when he’s sleeping. The good thing? So far, he’s staying in the 80s & 90s – even while asleep!
Our feeling is this – if he stays in the 80s & 90s (even if he occasionally slips into the 70s while he’s sleeping), they’ll probably keep him in the CICU for another day for observation. Our hope is to be moved to the floor by Tuesday if they’re happy with his heartrate and we have no other complications presenting themselves. (Knock on wood. Everyone. Now. ) Though, we’ve learned to take things day by day – so our goal is to have another uneventful day like yesterday, upping his feeds, playing a little bit, and keeping those heartrates nice and happy in the 80s, 90s – and dare I even hope for it? – 100s.
Edited: He’s in a deep sleep nap, and hitting high 60s.

Today was nice and uneventful. His blood pressure is doing well on its own, his headaches have diminished greatly, and tomorrow they’re going to wean him off the pacemaker to see how his heart does on his own. Otherwise, there were naps, visits with family & friends, bottles, some Princess Bride, some teething – and even a few smiles.
Here’s to an equally as uneventful night!