Wednesday, October 30, 2013

The NICU is not a roller coaster. The roller coaster ride starts AFTER the NICU.

NICU nurses, take note. The NICU ride is NOT a roller coaster. Roller coasters are fun, even while they're scary. And you know more or less that, chances are, all will be all right in the end. You're in for a ride, but at the end of it all, you strap in and hold on, confident that you'll get back off where you started and be able to look back at it all and laugh.

There is no such assurance in the NICU. While there are accomplishments, when you have a baby in critical condition, dangerous even to hold, there are no great moments of excited fun, no great uphill climbs. Not at first, at least. You try to enjoy every moment with your child, but this isn't a ride you enjoy. Small successes are followed by another surgery, another organ failed. And to top it off, you're not even sure where you're going.

It started to get fun for us just before our child was cleared from critical condition and became a "feeder/grower." It took over two months to believe he might live. Maybe that's when the roller coaster of "when do we get to go home?" begins. But until that day hit, we were not sure we'd ever be taking the baby home. It's not a roller coaster.

The funny thing is it was always on the bad days that you'd tell me this was "all just part of the roller coaster." I never heard this on the good days. Just the bad.

I don't remember waiting in a long line for this ride.

[NICU nurses: I KNOW you put this in the parent charts, "don't call it a roller coaster to the mom," I know this because for a solid two to three weeks I went from hearing that nearly daily to not hearing that analogy at all. THANK YOU for those solid two to three weeks. I was able to save a lot of eye-daggers by your notes to each other.]

No, no, a NICU is not a roller coaster. (I'm not the only one who thinks so. See? Some preemie mom even named her blog aintnorollercoaster.)

What is it then?  To me it feels more like being a part of a gigantic yo-yo. We're jerked around, at danger of loosing steam and ceasing to move altogether, dizzy with confusion, and not really sure which way is up or where we're headed.


THIS, though, THIS life after the NICU?  THIS is when the roller coaster ride begins. And in the ups-and-downs of life after the NICU, the ride is worth it. No, you really don't know what you're in for, and, yes, you wait with baited breath for the next corner, but you can breath. You're pretty sure you know where the ride will take you, you get comfortable and are all strapped in. You have a mostly healthy child. You cheer for the exciting big moments, like the first time he takes a bottle by mouth, or when he finally sits unassisted or gives that big toothless grin. You hold on for dear life at the drops, because they are still a little scary, but they don't last long, and you know you won't totally crash. Not likely, at least.  Besides, there is a joyous baby steering the ride, and that makes it all worth it. Sometimes, just as you start to relax, there are curves and turns and unexpected drops. Even with all that, THIS is a ride worth the wait.

Yes, I'd take this roller coaster of special needs to the NICU any day. It's manageable. And the NICU put it in perspective. Things aren't as scary here, so even the harder days aren't so bad.

Yesterday was one of those unexpected turns with a quick drop that followed.

"Stones?" I said to the nurse on the phone, "I thought that's what I was seeing... yes, I could see them. I didn't know they were anything until the ultrasound technician started to measure them, but yes, they were visible. ... They didn't look TOO big. And they can pass, right?  I hope it doesn't hurt him too much." And in my head, I was thinking: "No big deal, I think. I mean, it's not renal failure again."

JAM's big exciting appointment this week was with nephrology. Those are the kidney guys. The appointment had started off so well. The doctor was astonished at how bright and happy my fifteen-month-old was, how healthy since last year's kidney failure. All the pre-appointment labs looked good. "This is why I love treating children," he said, "they can heal so completely."

Then he went in for the renal ultrasound, just to be sure we weren't missing anything. That's when I saw black spots of hydronephrosis and white spots of kidney stones. I guess we weren't out of the woods yet. Not that I knew what they were at the time. I didn't suspect they were anything until I asked the ultrasound technition (who had cheerily pointed out the kidney and liver already, and so I thought might be in the mood to point out other parts of his anatomy) and she responded, "I can't give you results, you will have to consult with your doctor." I'd heard that before.

On the phone the next day the nurse confirmed that those spots were something. I don't know what kidney stones mean. I didn't know a little baby could get them. So we will consult with someone (likely his kidney doctor again) in the next few days to find out how to go forward.

In truth, my heart crashed a bit, and I wished more than the just the nurse had been on the phone, so that I could have had our questions answered immediately. Instead I will have to wait. I sighed. I had hoped all this was over. I'd hoped we were leaving the medically complex world behind, day by day. I guess not. It's not a big bump, I know. But it still jerks you around a bit. "I wonder if that'll be an ER appointment when they pass? Hopefully they'll explain to me what to do... Oh, poor baby. This may hurt a lot."

Poor little one. But alive little one. You are loved, baby JAM. And know that this world is so worth the ride, be it on a jerky yo-yo or an unending roller coaster. I'm glad you got to this point, baby boy, and I'm holding on with you. It's not so bad, you'll see.

[Okay, easy for me to say, I know. I don't have to pass a stone. Here's hoping it's an easy stone to pass!]

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