peek a boo

Calder’s new favorite game is Peek-a-Boo, and he likes it best when he controls the pace, choosing when to pull the blanket over his eyes and when to pull it off. Occasionally, over-his-eyes-time doesn't even make it a full second before he wants to see me react to him pulling it off. Sometimes Mom can’t keep up. He likes playing rougher with Dad, who always seems to get laughs with a little tummy action.

he he he

nothing to see here.

Calder cannot get enough of standing. Can’t get enough. He breaks into a huge, happy-man smile and starts slapping his feet all over the place while you keep him balanced. As soon as he picks up some coordination, he is going to be cruising our couch like nobody’s business.

carrots?
don't make me eat CARROTS!!

He is still averaging about two tube-feeds a day (sometimes one, sometimes three.) He never wants to eat right before bedtime at night, so we are always tubing him them. When the tube goes away someday, his propensity to skip second dinner could get interesting, and means we’ll probably need to change our regimen. Based on experience, I doubt our boy would sleep well on an empty stomach. The tube has been a boon and a burden, and I’m sure I’ll feel the same way when it’s gone.

Thankfully, we are finally almost officially out of isolation. Being out doesn’t mean it’s okay for him to get sick, that his lungs and immune system are magically better. What it means is that because of the warmer weather, the risk of getting sick has gone down. We’ll see what the docs say and hope Calder gets to do a little more hanging out.

who dey

over the river and through the woods

Holy moly, where did May go? I’ve been trying to get all caught up on blog entries from March and April and in the meantime, May flew right by.

Calder is making awesome progress on the G-tube weaning. I can say that now, a month after we started getting really aggressive about it, but really up until now it felt to me like it was slow-going. All the doctors have been so laudatory about his development that I suppose I just had very high expectations, thinking that as soon as we let him dictate the amounts by bottle and the schedule entirely that he would dump the tube within days. Of course, that’s crazy talk, and we have made a considerable number of adjustments since we started. At first, I swayed heavily toward his preferences, hardly tubing him at all, and trying to skip the 6am feed, as the doctors suggested. But nowadays, we are waking up at 6am even though we know he can either a) sleep right through it or b) fall back asleep very easily with a tiny bit of help because we have found that 6am is when the man really likes to chow down. When you’re trying to wean, there’s no sense in missing such a great opportunity. If he doesn’t eat well at 9am (say, at least 2.5 oz) we tube the other 1.5 – we’ve learned that getting off to a strong start seems to set the tone for the rest of the day. (Hey, sorta like they tell you to eat breakfast, right?) His eating has become much more predictable, although we still have our days where we have to tube him three or so times. But we’re getting there.

The Many Faces of Calder

The oxygen is still technically around, too, but at this point we have been instructed to just test him with the pulse oximeter several times a day and/or a few nights a week, and if he continues to sat fine, discontinue the oxygen, too.

i got this

Cristiane says he is doing much better with sitting. Still not sitting unsupported because there is always something more interesting behind him that he has to bend backward to see. At this stage he should no longer be using that reflex, the whole arching his back business, we’re told, but we do see it less and less. We catch him in his crib all the time now up on his knees, sticking his little bum up in the air.

back to the grind

This past Thursday was my first day back at work. Okay, “back” is a relative term. I do get to work from the comfort of my home for a few weeks as I continue to supervise Calder’s care, an opportunity I consider a great luxury and such a blessing! I am thankful for the gracious and understanding supervisors I’ve had throughout this whole beautiful mess.

And yes, it’s still a little bit of a mess for my very Type A personality. On our new regimen, Calder has been anything but predictable. Ginny gave rather nebulous instructions about how to decide when to tube him every day, so at each feed a decision needs to made. It’s not that our nurse cannot handle making this decision herself, not necessarily, but for what I consider such a crucial process, I feel it’s my mommy duty to help guide these decisions, to at least set some parameters, and that means that through the early stages, I want to be consulted. I know that for most kids, eating comes naturally. And while Calder clearly has the drive to be gobbling things up, at least sometimes, it’s not quite that easy, and there’s a little bit more riding on his ability to do so. It’s not just like hey, my kid might become dependent on this paci, I don’t want him to be nine years old and still sucking on it. For me, it’s more like hey, I don’t want my kid dependent on this G-tube when he’s in elementary school. Heck, daycare, for that matter. I could be a little overly anxious about this, I admit it. But let’s just say that for now, I take some comfort in the fact that while I’m upstairs teleworking, our nurse can easily pop upstairs to check with me my opinion on when to tube him, and when not to.

wait, whaaaat?

okay, i see your point.

only missing the mint julep

We tried more solids Wednesday night, without a highchair still, and my mom was less than convinced with this new approach. Can’t say I blame her – there was unquestionably more apple on the table and on his clothes than in his mouth – but hey, desperate times call for desperate measures. I’ll try it all!

a small step toward foodie-dom

Our GI NP, Ginny, said GFI! We are making nearly all the changes the pediatrician suggested.

First things first, I had butter on my bread last night. It was divine.

I also learned today that the formula our NICU docs apparently told everyone to stay on until the first birthday because preemies need it for their brains, well, I guess we’ve been off it for some time now. Woopsies. Ginny was not at all concerned. I suppose we came off it because of Calder’s digestive issues, who knows. It’s easy to get confused when you’ve got multiple medical issues you’re tracking but short story, I’m going to forgive myself and bet his brain will be just fine.

And last night Calder had sweet potatoes. By the look on his face you’d think we were feeding him worms! Clearly, this was NOT the steak juice Kraemer had let him lick from his finger a few weeks back, when his eyes popped open like a Jack-in-the-Box.

apples taste best served on giraffes

Today we saw Anne for speech, who walked us through initiating solids. For the most part, I think we approach them just as you would with a healthy term baby. But Calder does have some oral aversions, so we expect it to be a little bit more of a challenge; in other words, the pucker-face wasn’t much of a surprise. She told us that with most babies, they tell you to try foods 16 times before giving up on it, and that in Calder’s case, his distaste likely has more to do with the texture than the taste. We propped Calder in the hospital’s highchair and then Anne approached the situation in a way I would never have dreamed of doing: the messier the better (and of course, I had forgotten a bib.) The moment she plopped a couple scoops of apple in front of him Calder was all over that business, spreading it all over the tray, smooshing it to his cheeks, slapping it on his forehead and absolutely getting it all over his sleeves. I had handed him his favorite mini-Sophie chew toy, which Anne said was perfect for achieving our end result of letting him put the food in his mouth on his own, letting him control entry.

We are adding a flush schedule to his G-tube feeds, as was recommended, though we hope those feeds will start becoming less and less frequent.

Mom Can't Keep Up

lunch break!

botanical gardens

So many changes!

First things first, Calder weighed in today at a whopping 17 lbs, 4 oz; 26.6 in long; 16.75 head circumference. The nurse had to come back into the room to double-check her head measurement, she said he’d had such a big growth spurt! Dr T was equally impressed with his growth. He’s on the chart now for all dimensions for his chronological age, even if it is just 1 and 2% for length and head circumference, and 8% for weight. I’ll take it!  We didn’t map it on the graph, but she said he’d be somewhere around the 25^th percentile with his adjusted age.

With all this progress comes more change. Dr. T says it’s time to ditch the dairy-free diet and see how he fares. We were never SURE he had an intolerance or an allergy, although it certainly did seem to clear up some digestive issues. Even so, she says she thinks his gut is ready to handle it, and we can give it a try (but watch out for blood in the stools, she says – fantastic.) According to her it’s time to quit fortifying the breast milk with the special hypoallergenic formula, Allimentum Sensitive + Iron, and move to something more in the “normal” range, something for sensitive stomachs but not something designed for lots of allergies. Next, we should start adding water to his diet to help him move everything on through the system. Apparently, we should have been flushing his G-tube all along, but no one ever told us that. (I say that, but they could have – I’m sure we missed one or two important instructions on discharge day.) And, super exciting to me given how much I appreciate food myself, we get to introduce solids!

As if that weren’t enough craziness, Dr T told us it’s time to let Calder PO ad lib. In other words, let him eat by mouth when he wants and as much as he wants.

This could get tricky. Calder currently goes down (starts, anyway) around 9pm, may wake up once before we go to bed at 11pm, may wake up around 4-5pm, may not wake up at all. Regardless, we wake him at 6am to feed, and then let him sleep again until about 9:30 or 10. Dr T said, do you need to wake him up? For the most part, I felt like yes, I do. We had tried condensing his feeds into a shorter period before, but it made him throw up more, and he does not need any help in that department.

breaking in the new pack

Her response was to say, why don’t we let Calder drive his diet a little more? Why don’t you let him sleep through 6am if he wants to? Oh, and quit fortifying his food. BUT still make sure he gets all the calories he is required to have throughout the day. Let him take what he wants when he wants and just gavage him at the end of the day.

Yikes.

This is what moms of term babies deal with, right, taking cues from their kiddo, trying to make it mesh with their own lifestyles? We had JUST gotten into a really nice groove with Calder, where he was sleeping on cue during the day, sleeping through the night, digesting all his food in time for his next feed (which hadn’t always been the case) and now I’m told that I can treat him like a normal baby, AKA switch it all up right when I am going back to work? Don’t get me wrong, this is *great* news. But this should be really interesting. I can see us getting to the end of the day and being 20 oz short. You don’t get to just dump 20 oz in an infant’s stomach at one time, right before you lie him down for the night. At least not one who is already on medication for GERD.

I’m getting a little ahead of myself, though, because she suggested I run all this by our GI NP, who we see on Monday.

At PT this week he more or less refused to sit up on his own, but Cristiane said she could feel that he was much stronger.

Happy Easter!

We have some consonants! Yesterday Calder started saying “duh” (repeatedly: it’s more like duh duh duh, duh) and today saying “gooh.” One could take the duh-duh to be Da-da, but Kraemer says he isn’t counting it. Not exactly clear that he knows who Dada is.

 

We spent Easter this year as we spend every holiday these days – confined! J But that is a-ok with me. I like my family. Judging by our documentation of the day, however, Calder may not have liked us very much! We took it easy, reading some Easter books and playing with new toys sent by Getch and Granddad and tearing into the Easter basket sent by Grandma and Grandpa (although I think he was most interested in the cellophane.)

Protect those eyes!

To the left, to the left

Kraemer had to go out of town at the last minute this week, leaving Calder and I to fend for ourselves. I can tell you there have been no gourmet meals with the chef out of town. Although, since I cannot go to the supermarket with Calder, but cannot leave him home alone, there has been a lot of creative cooking and baby-holding.

These days Calder is learning to pivot on his belly. The “steps” in the development process, I’m told, aren't really steps, exactly, since some could potentially be flip-flopped given their overlapping estimated time of initiation. They include movements such as rolling over; pivoting; crawling on his stomach; balancing while sitting up by leaning forward on his hands; crawling on his knees; balancing to sit up by leaning side or back on hands; pulling himself up to sit; standing with support; etc. Pivoting is one “step” in the process I likely would have missed in observation if I hadn't been told to work on it with him. Right now he can pivot to the right and is sort of pivoting to the left; we're working more on the left.

caption, this, Mom!

Pretty soon, I won’t be around to observe Calder’s PT sessions – but someone else will. A nurse! I have been working at this for months, literally. We need a nurse as opposed to a nanny because of Calder’s specific medical needs, particularly his oxygen and G-tube. (Not to mention that day care is out of the question for us, according to our docs.) Of course, the need for a nurse was much greater (in both a medical and number-of-hands sense) when he first came home around Thanksgiving last year, but with me going back to work (starting with teleworking) on May 1, there is now no question that we need more help at home. Finally, FINALLY, I have been told the nurse will be on our doorstep next Tuesday morning. We will have two who split the week, so this should give me just enough time to show them the ropes before I hole myself upstairs with my computer throughout the day.

Poop on Michigan. Calder took
this to heart.