Day 29 -- Stuck between a rock (creatinine) and a hard place (PDA)

A year ago today we found ourselves a bit stuck. Jonathan's kidneys were starting to fail. I learned that a nephrologist was a kidney specialist. He'd come to see us a few times. He'd told us that JAM was too small for kidney dialsys, whatever that was.  Basically, he said, if Jonathan's creatinine levels in his blood didn't come down on their own, this would be a deal breaker. Creatinine was another word I'd learned. I could now sound more like a medical professional than most of the general population, and we were only one month in to this experience.

By the way, a "deal breaker" was my word.  It what I called anything that would cause his death. I couldn't bring myself to say "death," especially when people asked for updates. So I said "deal breaker" instead.  I also would say "take home baby" instead of "survivor."  I wanted to know if he would become a "take home baby." I didn't dare ask if he'd survive. I wanted to throw the grim into the shadows as much as possible.

If we could get his levels normal, they could close his open valve near his heart that was causing the murmur.  That would cause his heart to beat more effectively and might help keep the kidneys functioning properly.

But we had to get his kidney levels there first.

He was retaining fluid. While I rejoiced at his weight gain, I knew not all of it was good weight gain.

Here's what I wrote on our care page.  I am amazed at how optimistic I sounded. Here we were in a catch-22: can't fix the kidneys until the heart is fixed, can't fix the heart until the kidneys are working well enough to bring down the creatinine levels. And yet I don't acknowledge how dire it was. Instead I'm rejoicing that he's taking my own milk and may get his IV out soon. Was I ignorant or just trying to keep a brave face? I think perhaps it was a bit of both.

2 lbs 2, eyes of blue, (gootchie gootchie and all that)

Written August 15, 2012 1:04pm

SUMMARY:

• Heart surgery for the PDA vessel, but not yet (waiting for kidneys to improve).
• Neat stuff I: Jonathan's weight statistics
• Neat stuff II: On full feeds from Mom's milk with very little medical intervention needed for nutrition.
• Today's experiences with holding and looking

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Take Heart

Doctors decided on Monday to do surgery on Jonathan's PDA (vessel near the heart) as soon as his kidney function returned to normal.  They feel that closing the PDA now is the best option for him, but they want him as healthy as possible before they do surgery.

The nephrologists dropped by Monday afternoon and explained to me how they measure his kidney function (blood tests, urine output, etc).  They showed me two graph that show the results of the two blood tests they do for kidney function.  These graphs showed how his kidney function got worse on Saturday and Sunday but appeared to be resolving on its own.  Since he wasn't on any meds or feedings that might irritate the kidneys, they decided to wait for the levels to normalize on their own.

Tuesday his urine output was very low and these kidney numbers started to climb again (this is bad).  So they put him on a diuretic.  That seemed to be successful (at least according to the weight of his diapers -- they weigh his diapers every time he's changed).  According to this morning's blood test, those kidney-function numbers are coming back down, so we're back to wait for things to resolve themselves.

The doctors don't think those numbers will come down to a normal level again before the weekend, so the PDA surgery won't happen until next Monday or later.  Another scan on his heart has been scheduled for Monday to take one more look at the PDA before this surgery happens.

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Neat stuff

Jonathan now weighs over 2 lbs. Monday night he was around 2 lbs 3.5 oz, Tuesday he (thankfully!) lost some water weight (remember, he was retaining water because of the kidneys) and so he was down to 2 lbs 2 oz.  He might take off a little more tonight, but should probably still stay above 2 lbs.  That's nice!  (He was looking pretty puffy yesterday with all that extra water.  Looked good on him, except that that is not the way we want him to gain weight.)

Jonathan outgrew his PIC line yesterday, so they turned it in to an IV line.  Then that leaked, so they pulled it out altogether and overnight they gave him his required IV liquids through the IV line they'd given him a few days ago for a blood transfusion (blood platelets and stuff are too large to go through the pic line - they get stuck, so they always had to stick him again to give him blood). Then this morning the doctors put him on full feeds and gave the order to take him off IV liquids.  So, as soon as the IV line from the blood transfusion closes, they'll remove it and he'll be free of those pesky IVs until the day of his surgery (assuming he doesn't need any more blood).

And, in case you missed it, yes, that's right, my milk (plus a little human milk fortifier mixed in) is now alone sustaining my child's nutritional needs. Woot.  Grow baby grow!

He's off most of his medications now.  He's just getting a little bit of saline solution twice a day because the sodium levels in his blood are still a little low.

So, let me get this straight -- he needs lots of calories and fat to grow and he needs more salt for his blood levels, right?  And he's getting nearly all his nutrients from me?   Correct me if I'm wrong (actually, no, don't), but doesn't that make it sound like what I REALLY should be doing for my child is going out and eating more french fries?  Because that's what I'm hearing.

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Today with Jonathan

I held J today.  He wasn't comfy for most of the time because of a wet diaper and possibly his foot IV. (Note: next time change before the holding.)  He tried to find a sweet spot (which included trying to turn his head to the other side by swinging it down to my skin and trying to swing the head around - something he's both not strong enough to do AND that really messes with his vent).  He never quite found that spot, but he became VERY calm when I prayed over him. Very sweet.  Maybe he could sense when momma was calm and that calmed him.

Afterward when I (finally) changed his diaper he was alert and looking around.  It was cool to see that his eyes were both looking in the same direction at the same time and moving together (not always a given for him).  He also seemed to be responding to light.  A few times he seemed to be opening his eyes to look at me as I spoke.  It will be a bit yet before we're able to tell if he will have eye damage as a result of severe prematurity, things are still developing after all, but it was fun to see this step in the right direction.