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.

No GI answers yet - but glad for summer

Jonathan is now back to his October weight. That's a loss of half a pound more. He's been pretty sick (including temps so high he ended up in the ER last weekend) so this explains some of it, but we were hoping for answers now.  No weight gain in eight months is scary in a one year old.

JAM continues to grow taller and looks more and more like a little boy every day, but he is still stuck at an easy-to-toss 15 to 16 pounds. It makes Steve's nightly romp with the kids easy and fun, but it has cause me to gain worry weight --the weight that he should have gained by now plus some.  A new gym membership and new FANTASTIC running group in town should help with both the worry and the weight on my end, but neither get to the root of JAM's sticky problems.

We had hoped that the procedure with GI would answer all our questions. It didn't. No poor absorption issues spotted. Nothing.

So we are back to confused.

In other news, he has perfected his hand clapping and has stood for up to five seconds on his own. He has even taken his first step - although it was more like a graceful fall than a step. He might just be walking by two!

And finally, I ended my day job last week. This led to a slight crisis of identity. This week I woke up to a dream where I'd just graduated from college but had no job and no idea what I wanted to do with my future. I hadn't even applied to grad school, but I thought to myself that, since I couldn't figure out what else to do with my life, maybe that's what I should be doing.

Thankfully the morning light reminded me that my job was set before me, and it was a good and worthwhile position. I even got a training manual from his new speech therapist in our new town later that same morning. She says that since he's entering the program late, I need to read chapters one through six by next Wednesday. And just like that, I'm back to school! Training how to be an advocate and teacher for JAM.

By the way, my office view couldn't be better. I get to be outside whenever the weather allows, and I can work from a sunny window inside. Plus, there's no dress code, and my solo client is one of the easiest going, cutest people in the world.  I'm blessed.  I just hope I can also bless him.

Grow Johnny Grow

We met with the developmental pediatrician's nurse again today.  The one we normally see wasn't in, so this nurse was filling in. JAM had lost half a pound since his last weigh-in. He still hasn't gained since November.

She sat and looked at us for a long time, thought out loud, and was in essence fantastic.  We re-explored together all sorts of options. Pancreatic insufficiency. Celiacs. Nephrological issues. During the visit Jonathan lustily ate 8 oz of high calorie toddler formula, proving to her that he really WAS taking in food and really DID have hunger cues (something that isn't a given for micropreemies).

She is as baffled as our previous nurse. She pulled in the developmental doctor. They discussed JAM's case. She discussed what GI was doing with him. We rejoiced that he continues to grow vertically and his head is on the curve, but we mourned at how his BMI has utterly tanked since last fall.  At this rate he'll be at olympic athlete status for BMI by next fall -- only without the muscles.  Not right for a toddler.

We discussed absorption issues -- our best guess at this point. He's borderline in some areas. She confirmed that he didn't lose enough of his gut during his bout of NEC to qualify for short gut issues.  She also confirmed that he was adorable.  We knew that one.  We left with a new formula and no real answers. She is on the case, though, and really wants to get to the bottom of this. We're grateful. We want this mystery solved, too.

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In other news, changes are in the air. The weather is warmer, I begin training for NICU volunteering tomorrow, and we move within the week. So much is happening. I cannot wait until we are settled and I can start writing in a more disciplined fashion again.

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In other-other news, even if I haven't managed writing, I have kept reading, and now that I've gotten feedly to work on my phone, much of that reading has been other blogs.. I guess I've used commenting on other people's blogs as a stand-in for writing on my own during this busy season, especially when the post hits home, like this one. Jack's mom liked my comment on this blog post so much that she turned it into a stand-alone blog post. Thank you. (Life with Jack is one of my favorite micro-preemie blogs. If you haven't checked it out, do. He's a few years older than JAM which has always helped me see the path forward.)

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Speaking of following people, if you're not following me on facebook yet, "like" my author's page, here. (www.facebook.com/momofa23weeker)

The difference of a due date

As you see from yesterday's post, days matter in the life of a micropreemie.  A year ago today, though, I still hoped for a full-term baby.  But things weren't looking good.

I was in bed rest in the hospital, and the contractions had started to return.  It was July 5, 2012.  I was 21 weeks past my last cycle, and trying to figure out how early I could have this baby and have him live.  I suddenly became very concerned about days.  There was talk about letting me go home tomorrow to do bed rest at home, if I could get the contractions back under control.  In preparation for that, the nurse came in and was going through my discharge record with me.  She said I was 21 weeks and 3 days along, due November 12.  This was as dated by the first trimester ultrasound, and every ultrasound since.  21 weeks and 3 days, due November 12.  But according to my last menstrual cycle I was 21 weeks and 5 days.

A few weeks earlier when the second trimester ultrasound had revealed the same date as my first trimester ultrasound, I'd asked them to use the later due date, November 12.  At that point all was well in my pregnancy.  I wanted my charts changed so that I wouldn't feel like inducing early. It was sort of a mental game. I hate pitocin. I had planned to have this baby via vaginal birth after a terrible experience and c-section with my second child, and I'd wanted to have the time for this baby to come drug-free and in his own time.

That was before I learned that "his own time" seemed to be far too soon.  In the past week, on bed rest fighting to stay pregnant, I'd changed my mind about the best due date for this baby.  "Could you state my due date as November 10 instead?  That's my due date by my last menstrual cycle."  And, since they were so close, just like that, I went from 21 weeks and 3 days to 21 weeks and 5 days pregnant.  Seems small, I know, but I was playing a different mental game this time.

Turns out those two days would matter.  When I went into labor a few weeks later, on July 15, I was in the 23 week range by the November 10 date, and the 22 week range by the November 12 date.  Changing the date didn't make him more viable, but it made him more likely to be considered potentially viable in the minds of doctors and nurses. And in my mind, too.  Only one doctor would have considered resuscitating a 22 weeker.  All were willing to resuscitate a 23 weeker.

Lesson Learned: If you are not yet to 24 weeks, go by the EARLIEST due date allowed. Don't switch to the later one until you're well into your last trimester.  It might not matter, but you never know.

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Today, July 5, 2013 is a beautiful day. Perfect weather. I'll probably go for a run once I've had a chance to pump. There's a cool breeze and a warm sun. My sister and her friend dropped by on their way through town. We all sat out on a blanket near the lake and enjoyed sandwiches for dinner. Despite being extraordinarily tired from a long day (his post-op visit was today) Jonathan showed off his rolling skills on the blanket, and the girls got as close to the water as they possibly could without getting in trouble. They found a turtle, and Ella is sure she counted 42 ducks.  While he was a bit tired for it all, Jonathan even managed to sit up for a few seconds by himself.

Our worries today are primarily food related. "I don't get it," Steve said to me over the phone at lunch time, "He's a human, humans like to eat.  Why doesn't he like to eat?!?"

The last time Jonathan was weighed, we saw that he was starting to fall even further off the growth chart.  He's already less than 2% for his adjusted age, less than 0.1% for his actual age, and yet he doesn't seem able to get from 13 to 14 pounds -- even if we give him three months to do it.  He's not losing weight, not yet, but his rate of growth is no longer tracking with the growth curves.

So we try to feed him. Whatever he wants, whenever he wants.  He's okay with teething biscuits and oatmeal and fruit and veggies -- as long as he is feeding himself.  Problem is, he's too uncoordinated. And today, even though we gave him ample time to play with the food himself, he wanted only to stare at the spoon in his hand.  We count the ounces of breast milk.  We add extra calories through formula. We sneak food in him whenever we can via a feeding tube in his tummy, but he is still so very small.  His feet just this past month became bigger than the prints we have of his sister on the day she was born.  And then they are only barely bigger.

"Maybe he's tired. Or teething?" I suggested over the phone. It seemed possible. With our other kids, I'd just let them be. No biggy if they don't want to eat. With Jonathan it's a guessing game.  Feed him -- but if you over feed him that's really bad, he'll make you regret it -- or don't feed him until he tells you he's hungry. He'll tell us, but then maybe we've waited too long and lost precious time to sneak in extra calories.

Mostly we just sneak the calories through the g-tube.  Tonight I did that after he fell asleep.  Only two extra ounces.  But it didn't sit well, so fifteen minutes later he woke up crying.  As I sat in the rocking chair rocking him back to sleep, I watched the light on the canopy of maple leaves outside. He is little, but he is full of spirit. He is the happiest, most content child we've ever had -- and we've had some content children.  (Eleanor alone is responsible for a half a dozen more babies being born around a year after she was -- "false advertising" she was. "They don't all come this cute or this well behaved" I should have put across her chest on a onesie to protect all the unsuspecting graduate students.) Jonathan is even more easy going.  And his smile lights up a room.  His cute shy way of burying his head when you say his name -- it's endearing.  He's cute. And easily portable.