More gratitude - The sun has come out again

Checking out the toys

Y'all know that J is small and developmentally delayed. And y'all know that some of that is from his prematurity, and some is from the long undiagnosed renal tubular acidosis.

Saying he's "developmentally delayed" is harder than admitting he's small. I want to strike it out with all the "BUT"s of his life. "BUT he's trying so hard, BUT he's almost up to 50 words. BUT you wouldn't know it looking at him. BUT he's not THAT behind, BUT it's from the lethargy of undiagnosed RTA." But no BUT will remove the delays from his chart, not yet.

We had an appointment with the developmental pediatrician today to check up on these issues and get an overall sense of progress.

Winter gray lifted and the sun showed through scattered white clouds the full there and home again. I knew the sun would come back again, eventually.

As he played in the waiting room, another girl, just his height, came and joined us. He viewed her with cautious curiosity, and she saw him as an instant friend. They played side-by-side for a while, and then she jumped up on a table that was just above waist height for her. He regarded this with some surprise.

"Learning bad habits, are you, buddy?" I said to J.

"Oh, get down from there! You're teaching him bad habits!" the other mom echoed to her daughter.

"It's okay," I said, "He doesn't have the strength to do that. And, honestly, if he did, I'd be thrilled."

Because the two looked like twins in height and build, the next question was inevitable.

"How old is he?"

"Oh, certainly older than she is." I said, "He's a tiny guy."

She nodded at my redirection and turned to her daughter. But, looking at them side by side, exactly the same height and playing so similarly, curiosity got the best of me, too.

"So, how old is she?" I asked.

"Almost two," her mom beamed.

"Ah!" I said, and then, because it would be rude not to share, "He'll be three in July."

"Wow, he IS itty-bitty!" she replied.

But do you know what? The comment didn't sting. Through that entire interaction, watching him with an almost-two-year-old who was clearly stronger than him but not THAT different, I couldn't help but smile with gratitude. "She's an almost-two-year-old." I thought, "That means he looks like an almost-two-year-old and he acts like an almost-two-year-old. He might look like a two year old before he turns three!" I thought, "And he's getting so strong,"

Our conversation stopped there as the nurse called us in. Jonathan heard her call and walked HIMSELF out of the waiting room (a first), head held high with the confidence of a toddler who knows where he was going. I followed him, still smiling, thinking of the little girl.

In the doctor's office, he paraded himself around the room with glee. I marveled that his rib cage was no longer visible. Four months ago I had to keep him strapped in the stroller to keep his hands off the dirty floor. This time around he never once tried to crawl. He was terribly helpful with his physical, showing the developmental pediatrician how to use the alligator hammer to check his reflexes, and reminding her that a fun looking twirly wire connected the fundoscope to the wall. What a difference from the lethargic stares of last spring. So grateful.

He weighs nearly 9.5 kilos (20.75 lbs) and is 31.25 inches. He's still off (below) all the charts for height and weight by age, and he's sitting right around the 5% weight-for-height ratio, but that's really good compared to a year ago, on all accounts. Our weight goal is 10 kg by April -- a goal that seemed impossible when we set it last fall, but he is getting there. Ah, gratitude.

The developmental pediatrician commented on his muscle tone. "I have written here from our last visit 'low muscle tone in ankle,'" she said, "but he's not any more." She gushed. I'm overjoyed.

The endocrinologist doesn't think J has any hormone related ailments. The GI doctor thinks he looks great and confirmed that NEC was likely the cause of his zinc deficiency, which is an answer to that question. Both specialists have one more follow up appointment (one four months out, one a year out), but in both cases, I think that just may be the last we see of their offices.

We've seen huge gains with the in-home physical and occupational therapists over the last two months (it's hard to believe it's only been that long) and so at today's appointment we arranged for him to switch to inpatient therapy after he's out of isolation. I was reminded that April was just around the corner.

I could climb this -- if I wanted to.

The drive to inpatient therapy is not short, and it'll mean weekly appointments in the Big City, but this boy is taking off -- and it seems for the first time in a long time that "catching up" might just be a thing for him. It will be a while yet, but we are so grateful.

These amazing developments (well, other than the emergence of the sun) brought to you in part by nephrologists, fixers of the kidneys, and by bicitra, the medicine that is correcting J's renal tubular acidosis. This month is national kidney month. We remember you this month, kidneys. Thank you for keeping us alive, giving us energy, and helping us pee -- all year round.

Day 16 - breathing

While Jonathan had started out breathing relatively well for a micro-preemie -- and by this I mean that he was breathing his own breaths above the vent and not requiring a huge amount of oxygenated air -- after his first week of life his breathing started to decline a little. He started requiring more oxygen in his air. And after his second week, it declined a little more. He began "riding the vent," meaning he was only taking the breaths forced in his lungs by the breathing machine.

J on a vent - the tube delivered forced breaths of surficant and air.

He yo-yoed between needing more oxygen, then coming down a little on his oxygen needs, then needing yet more breathing support.  They would take a blood gas test (which involved pricking his heel to draw blood, putting that in a little test tube, and then rushing it to the lab before the blood clotted) and in those tests after he had been "weaned" from the vent a bit it would too often show elevated amounts of CO2 in his blood.  To explain -- the pulse oximeter on his foot measured the amount of oxygen in his blood (think "inhale") and the heel-prick blood test measured the amount of carbon dioxide, one of the blood gases, in his blood (think "exhale").  We wanted his CO2 to be low -- to show he wasn't holding on to too much carbon dioxide -- and his oxygen as read continually by the pulse ox monitor to be in that sweet spot where preemies grow best, not too high (bad for eyes) and not too low (bad for everything else).

Point of all this being, he wasn't returning air as well as he should have been. His carbon dioxide levels were too high, so even if his oxygen needs came down, the machine hooked to him had to be tweaked, made more invasive (and thus more likely to do some damage to the lungs), in order to keep him alive.

I read this article today, about the short life of J.F.K's son, Patrick, almost exactly 50 years ago. He was born five and a half weeks premature at just over 4.5 lbs. (Jonathan didn't hit that weight until he was four months old.) I realized reading Patrick's story just how far we've come in less than a lifetime. Patrick's breathing, too, was labored and difficult. Like Jonathan, he suffered from respiratory distress syndrome (RDS). But unlike Jonathan, he didn't have surfacant or high-tech breathing machines.  Despite the best doctors, he lived less than two days. Had he been born today, his chances of survival would have been 95%.

It is a sobering thought. It fills me with such sorrow for those (and the parents of those) who didn't make it, and with such gratitude that the medical profession put so much effort into improving neonatal care. Thank you, doctors. Thank you.

Good grief. Did they have to put this much tape on me?

A year ago the nurse tried to help me feel better about Jonathan's declining breath. She talked about this being just part of the NICU rollercoaster (HATE that term enough now to probably dedicate a full blog post to it later), and said that preemies seemed to either struggle with their lungs or their gut, and for him it seemed to be the lungs.  Since I still feared that gut disease that kills preemies, I figured that the lung thing wasn't that bad.

As long as he still had margins, as long as they could still do more to keep him breathing, this was okay. Maybe he'd be on aggressive lung therapies or steroids for lung development. Maybe for life. As long as he had life, this was okay. With him requiring more and more oxygen, and breathing less and less on his own, however, I was getting a bit nervous.

His doctor told me to pray for supple lungs.

And then I remembered a note I'd gotten from a friend a bit over a week before. In the note, she said she was praying for his lungs. At the time I thought, "why lungs?" At the time I thought, "they just took him off his food because they're afraid he's not tolerating it. I'm more nervous about his belly."
 

But that had changed, and I was getting increasingly anxious about his breaths. Whenever I called in to check up on him (remember, I was still home recovering), I asked for his stats. I kept close track. Up or down on oxygen needs?  How are his blood gasses?  Is he getting better or worse?  It seemed mostly worse, with only tiny steps better in between.

I realized my friend was right to pray for his lungs. His belly was doing fine. Once his system realized what food was, he ate well. For nearly the past week he never had any breast milk left in his tummy when it was time for the next feeding. They pull back on the feeding tube, pulling stomach contents up, and count how much milk is left in the stomach before each feed.  For him, they only got air.

He was doing so well that I almost wished they'd give him more milk, to help him grow, but I knew that (like everything else in the NICU), things had to be carefully regulated. We even weighed his diapers. I've heard many NICU moms and dads go home and wonder if they should still weigh diapers, it seems so odd to us after months of careful regulation to just drop the diaper in the waste bin.

But back to my friend. She was right. He needed prayer for his lungs, not his gut. He needed soft, supple lungs that could take in and return the oxygen and carbon dioxide in his blood. How glad I was for the Spirit's promptings, waking up friends in the middle of the night to carry vigil for my fragile son, and leading them when we didn't how to pray.

Looking back it's hard to remember all the difficulties he had with breathing.  At the same time, I am so grateful, so thankful, so amazed.

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Today, 2013:  Just in case you're curious, as anticipated, we do have to give Jonathan steroid treatments for his lungs. It's not nearly as much support as we'd feared, though. He even left the NICU without a referral to a pulmonologist. That didn't last more than a few months, though, and he began lung treatment three months after he came home from the NICU,  It appeared he wasn't growing out of his tachypnea (fast breathing, like hyperventalation without the passing out or loss of oxygen to the brain).

When he first went on the breathing treatment we used a nebulizer.  It took about 15 to 20 minutes every morning and night to administer the drugs. When he responded well to that, they changed the drug so that it could be given with an inhaler instead. Now he gets two puffs morning and night.  It takes almost no time.

Even though it takes no time, the steroid treatment has become an essential part of his bedtime routine. When he's really tired, he won't take his full bottle until we've given him his inhaler. It's not like it's fast acting, it doesn't help him take his bottle better or anything short-term. The best I can figure is that he needs this sign that it's bedtime, that it's safe to go to sleep drinking the milk. Then he can relax and doze off.  For most babies that sign is their evening bath or cuddle time with their mom or dad.  For Jonathan, it's his inhaler.

Thank you, modern medicine.