A Beautiful Day in the Neighborhood

Unsurprisingly, after our first foray into the world a couple weeks ago, Calder came down with his first cold outside of the NICU. I gave him the treatment I've learned to give myself, which is sleep, sleep and more sleep, which he did not protest against in the least. Lucky for us it did not really seem to affect his breathing too terribly – he had a bit of a cough (outside of his typical coughing) and a slightly stuffy nose, but he recovered in about a week’s time.

I’m also happy to report that he started crawling today. He had been pushing himself with his feet to climb over my legs, the back of our glider, etc., but hadn't yet translated it to the floor. He appears to be skipping over the kind of crawl where you drag your belly (can’t blame him) and launching right into knee-crawling. His “crawl” wasn't a smooth one-hand-in-front-of-other coordinated with a movement of each leg, but he did manage to inch himself across about three feet of the mat. I’m counting it. We expect that when we get to Cincinnati next week where my parents have plenty of carpeted floor, Calder might be a little more comfortable and have a little more traction to work with.

We also recently celebrated Kraemer’s first official Father’s Day. Kraemer was getting over a cold but that made it a perfect day to take it easy (silver lining, right?) In between World Cup matches, Kraemer took his little man out and about the neighborhood and hung out in the shade of a tree on the lawn of a school just around the corner. We don’t have much of a lawn at our own little row home but thankfully public parks and other green grassy areas abound. I also captured some super adorable shots of the father-son duo in matching bow ties that I have been forbidden from posting, mostly because Kraemer doesn't do matching and only posed to please his wife. J They’re awfully cute, though. Maybe if you petition Kraemer to let me post them he’ll let you see.

And PS. Have I mentioned how much Calder likes yogurt? Oh wait?! Have I mentioned that we are easing him into dairy? When we saw Ginny a little over a week ago she told us that instead of introducing dairy via my supply – where if it did not work I’d have to wait two weeks again before it was out of my system, and why waste all that milk? – we could just test the yogurt with him directly. I've figured out that there are different levels, you could say, of dairy, with some stuff having greater potential to cause a reaction than others. If it’s been cooked or otherwise processed in some way, the structure of the protein has changed and may be more digestible for them, for example. I found this plan online, which is clearly British (um, fish pie?), although by the time I located it we were already onto yogurt and even had given him some butter in our homemade pureed carrots. So now that I know he tolerates that, guess what’s next? Yogurt for ME!!! Followed closely by ice cream because, hey, according to the Brits its in the same category, isn't it?

He doesn't appear to have gained much weight, still hovering just below the 18-pound mark. Ginny doesn't seem concerned so for now, neither will we be. He has been eating much better and more consistently now that we've spaced his feeds out more, and sometimes he is so eager to eat whatever puree we have whipped up and ready for him that he nearly kicks himself out of his seat. Since we've been weaning him from the tube, she wasn't surprised that his weight has leveled off and still told us to start dropping the tube feeds entirely. Moving right along, thank you very much!

It's a Big World Out There

This past weekend was a wild weekend.

Calder is especially intrigued by his
new doctor doggy from his cousins.
Note that Q has entirely tired himself out
while A handles the gift giving.

After almost a full year, Calder finally got to meet his cousins, his Aunt A and Uncle B (on Kraemer’s side). Children are not allowed in the NICU, even siblings. In usual Taryn fashion, I have no photos or videos of this introduction, although it was really very sweet. Calder could not touch his cousins, per doctor’s orders, but he sure got a kick out of watching them from afar. His cousin Q is a total happy man, lots of energy, very silly and playful, and Calder was fascinated. If his legs worked a little differently, he would have joined him in a heartbeat. I think he felt he was looking into his future. His cousin A is eight going on 18, composed, mature and sweet. She read to him, and whereas I might speed through a book, worried that Calder won’t have the patience to make it through to the end, A peacefully, steadily read him an entire book that had more than four words, while Calder was (mostly) mesmerized.

Air and Space Museum. With arguably little space.

While the troop was here, we decided to take the doctor up on his clearance and venture out. We meandered from our home on the Hill down past the Capitol Building and Library of Congress, and then took a detour into the Botanical Gardens as we made our way to the Air and Space Museum. We have been in isolation for so long, so being OUT for the first time with Calder, the sheer number of people in the world boggled my mind. In the gardens, a woman who I can only imagine was quite taken by Calder’s cuteness reached into his stroller and almost had his legs before Kraemer took a sharp right turn, making as we were getting out of *their* way as we crossed paths on a skinny bridge. We both gave the woman our biggest smiles. “No hard feelings,” I try to convey. At Air and Space the crowds were so immense that I nearly hyperventilated. Not really, okay, but I do believe that after wedging myself and Calder (on my chest at this point) through the security at the doors I stood in the middle of the vast lobby area and just stood there for at least six minutes taking it all in before moving again.

We made it through the museum in one piece, Calder mostly staying quiet and to himself. We weren’t quite as lucky at the Mexican restaurant we headed to for dinner. With Calder in my lap swatting incessantly at the table edge, I decided it would be prudent to wipe down the edge with a wipe and some hand-san; I was awestruck by the visible color difference. While I tried containing his arms and munching on some chips, one of the servers walked by and quick as a flash pinched his cheek. Whoa! This one I was completely unprepared for and just sorta sat there dumbfounded. 

In the midst of all these adventures, we had his two bottom front teeth break the surface of the gums. We’ve been saying for weeks now that he is probably teething, the way he has been gnawing on things with a little more fervor than usual, and it was nice to finally be right. J

And finally, I did not forget to document the great departure (okay, full disclosure for the record, I asked Neima to document it while I was at work.) We got on quite well with our O2 man, but he was happy to say goodbye, too!

bye bye!

Kiss the Tanks Goodbye!

Calder’s pulmo said, hey, guys, let’s kick this oxygen to the curb! (okay, so not those *exact* words)

So we did! There’s a small part of me – very, very teensy tiny – that was nervous to see it go. I took some comfort in knowing that in an emergency, it was right there, next to his crib, if he needed it. Dr K knows what he’s talking about (dunno how we got the chief at Children’s Pulmonary Division but we did, and he’s awesome), so I can rest assured knowing that Calder is ready to be fully liberated, but he also told us that yes, he may need it when(ever) he gets sick … up until about six years old. This didn’t really surprise me, because I’d heard stories on my preemie moms listserv about kids being eight and winding up in the PICU because of some illness. But TODAY, we are celebrating a big milestone for Calder. Goodbye, oxygen; goodbye, nasal cannula; goodbye, loud-as-a-siren pulse oximeter!

He also gave us the green light for a little more social interaction. Still no contact with kiddos, and when in large groups, leave holding the bugger to family members, but we can go to, say, a baseball game, as long as we’re careful. The guy next to you spits every time he talks? Yup, scoot over. The woman behind you is hacking up a lung? Time to take a walk. As if I needed a reason to be more fastidious in my life, I have a child that makes me doubly crazy about germs. I know I’m not alone – the other preemie moms and I commiserate regularly about how to keep microbes to a minimum, how to still have a life, how to delicately ask someone not to touch your child – but it doesn’t make it easier. When I ask you to wash your hands and still don’t let you hold him, please forgive me. J

yes, i'm SITTING!!

a little busy here

yo

 

The progress on the G-tube weaning, however, has slowed to a halt. We don’t know why, but his sure-bet, big morning PO feed is no longer so big, and his day-time feeds are hit or miss. His bedtime feed, well, that’s practically non-existent by mouth. We found out that the nurses have been stretching the 30-minute rule; their intentions are good, I think, wanting him to be able to take it all, but sometimes they would still be feeding him when I walk in from work, an hour after they started. I know they weren’t really keeping time, but they said they have to give him breaks in order for him to take it, meaning that even though they’d been at it for an hour, his literal feeding time was probably under 30 minutes. I think this got Calder into a habit of just “snacking,” taking a little bit for a few minutes and then stopping to play for 10-15 minutes, taking a little bit more, etc. Ginny told me to tell the nurses they MUST stop at 30 minutes. We’ll see her again this week and see what else she has to say.

mmm, prunes.

no, seriously, i'm a fan

Our neighbors brought by this cool little activity station that can either sit directly on the floor or be propped up on legs, and it is the first official prop that has proven to us Calder has the muscles to sit on his own, because it is the first thing that has kept his attention long enough that he doesn’t immediately try turning around or lunging forward when we take away our hands. Now, he did sorta wind up in the splits as he got more and more excited and inched his hands to the furthest point of the toy, but as I said, point made. He can sit! I think next we’ll be investing in a push toy (our PT doesn’t support the use of the walkers where they stand in the middle, exersaucers or jumperoos) that can help him get his walk on.

sweet little sleepy-head

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!