Wednesday, April 23, 2014

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.


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.


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.)


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

Wednesday, April 9, 2014

Welcome April? - A peek at life now.

I cannot believe March is over. In many ways this year it was nasty and gross, the sort of month you are ready to shake off. The showers of spring have finally hit and are washing away the ugly grime.

We are moving. We think we've sold our house. We were sick with bronchitis and pneumonia basically all month. This was scarier for JAM than for the rest of us. We were close to hospitalization and oxygen, but we dodged it, gratefully. His albuterol inhaler was well-used this past month. And then, as if the weather were commiserating with us, winter seemed to refuse to end.

April has made a huge difference. We are all a bit more optimistic. Days have been spent out of doors, and while we still have sniffles and are still in transition, the world just looks brighter.

In March we visited the GI doctor. She gave us some magic juice that was specially designed to realign the delicate flora of his GI. She called the juice an antibiotic. She also asked us to give him probiotic. We did so faithfully. Some of the pain went away. The overall problems abated for about a week and then returned. Less pain, but same symptoms.

So this week I contacted his GI doctor and his nutritionist again. Since hitting the screw with a hammer didn't seem to nail anything in last time, we're going to try again, only hit harder. More antibiotic - but for a full month instead of a few weeks. His gut will heal, gosh darn it. We will make it so.

The nutritionist offered a variety of really yummy looking high-calorie smoothies. I told her I'd be sure to try the recipes "to make sure they tasted okay" before handing them over to him. She has been in conversation with an NP and a developmental pediatrician, all of whom are stumped about my little guy. Keep up with the zinc supplements. Keep up with the high calorie foods. And maybe, maybe he might someday grow.

Warm weather finally allowed us to get out. Here's JAM
with his sister at a sculpture garden, shoeing a gigantic horse
with great effort.
See, I told ya he was still so small.
He's been hanging out at 15-16 pounds since October.  He's still comfortable in his 9 month clothing. (Yep, he's 20 months old. Yes, that means kids a full year younger than him are in the same size clothing as him.)

Just because he's little, though, doesn't mean he doesn't LOOK his age. Over the past month he's decided that he's a toddler now.

He's crawling and climbing and giggling and exploring. He talks, though we don't often understand him, and he has a will that is showing more and more each day with insistent whines that we don't always know how to interpret. He loves to hold our hands and walk around the living room. We did this in a waiting room one day, and someone commented that he looked too little to be walking around like that. He's actually behind in gross-motor by about six months. Had he been a "normal" size for his age, they'd be wondering why he wasn't walking on his own yet.  I guess there are benefits to being little. You look brilliant for your size. Brilliance. That's what April will be about. Sunshine.

Welcome, spring.