Thursday, December 26, 2013

Joy to the World!

Of course, Christmas was pretty special this year. For obvious reasons. :)

There aren’t really words to describe how blessed I feel to have our baby home, that he survived, some might say against the odds. As a preemie mom seeking guidance in various ways, I’m always trolling listservs, websites and Facebook pages that have sprung up to support parents in our situation (and what a community it is!) Along the way I have discovered countless inspiring stories, many much like our own, but all unique. And sometimes, the parents have to be strong for much different reasons. While I know challenges lay ahead, I am so thankful that we get to hug and squeeze our little man today.

Because of Calder’s lack of an immune system -- which I know I’ve mentioned already a thousand times, but hey, it’s a big deal -- not to mention the logistics of traveling with a G-tube-fed baby and a mom who spends half her life pumping … we stayed home.


This is only the second Christmas that I can remember spending away from my family in Cincinnati (the first being the year I lived in India.) So this year was different, but still as magical as I could have hoped for. Kraemer kindly agreed to support my hankering for holiday d├ęcor, so while my mom babysat (she stayed on a week after Thanksgiving while Kraemer was in Ukraine for work), we scurried down two blocks to pick out a tree, and Kraemer carried it home for us (my hero!) We took a short drive down to a local elementary school to pick up some garland and berries, and later Kraemer scored some lights from CVS. My mom had brought all the ornaments my parents had given me over the years crafted by women at our church bazaar; between those, a new ornament from the Juban’s for Calder’s first Christmas and a set Kraemer brought back from Kiev, wouldn’t you know it, our 6-footer was sparkly and full. Garland and lights graced our front door, our mantels and our banister, the latter being Calder’s favorite.

Calder smiles more now, and we had fun dressing him up over the holidays in all his Christmas gear from friends and family. I don’t know what we’re going to do when Christmas is over – for now, bouncing the kid on our knees and singing him Christmas carols is a go-to when he starts to fuss.

On a more medical note, the appointment with the physiatrist was very positive. Calder loves new faces so squirmed happily on the table as the nurse practitioner and doctor took their turns with him. While they certainly cannot rule out certain conditions that may present themselves later in life, both were very satisfied with his behavior and growth and were optimistic about the future. In fact, we don’t have to go back for another visit for three months.

Calder is now super active, at least as active as a non-mobile baby could possibly be, and one of his favorite places to have fun is on his changing table, right after his bath. As evidenced below.

Right now, the child can all asleep sitting up. For his sake, I hope he maintains that capability.

Wednesday, December 18, 2013

Car People

For those of you who have perused our blog before, you may recall a past "run-in" we endured with our motor vehicles back in August. Then about, oh, a month later, someone [cough-cough-Kraemer-cough :)] ran my car up against an [admittedly oddly shaped] curb, ripping down a piece of who knows what from its bottom. Not all the way off, mind you, but just enough that it drug on the ground. (To be fair, this wasn't me only because Kraemer is always nice enough to be the one behind the wheel, since I'm generally pumping. Yes, in the car, it's nuts.) Kraemer thought he had it fixed, and yet one evening, when Kraemer was out to dinner with a friend visiting DC and I was heading to the hospital alone, I heard a curiously familiar noise. Could that be a dragging piece of plastic-who-knows-what? It could. I drove right back home, where I made good time and beautiful car art with some duct tape. (Habitaters, the miracle of duct tape, right?)

always in this darn seat,
and my mom never fixes my hat!
Sidebar: Kraemer and I write many of these entries in tandem. We try to use the appropriate names and pronouns, but sometimes you probably think Taryn is narrating and two paragraphs later you could swear you're vibing on Kraemer's tone. That's probably because you are. Sorry about that. :)

If you haven't picked it up yet, we are not car people. That might sound a bit odd coming from a family with two cars, but tons of people in DC don't even own A car much less two. (You could say we only still own ours because, well, run, they do, but resale value wouldn't amount to much.) The fact that we only drive to go to Calder's doctors appointments means that we haven't been using our cars on a regular basis for years now, and that lack of use takes its toll.

Calder sees a plethora of doctors on a regular basis, one of them being the ophthalmologist. We packed him up and ran out across the river to Falls Church to see how his ROP had progressed/regressed. With flu season in full swing the plan was for me to wait in the car with Calder while Taryn ran up, checked us in, and then she'd text when the doctor was ready to take us back. Taryn dialed down five minutes later to inform me that the doctor had had surgery last week and her office had failed to call us to cancel the appointment. (Taryn also very nearly had some words with the gentleman who told her she couldn't use her cell phone ... to call her husband to tell him about the change in plans, a result of their mistake.) Needless to say we were perturbed that we would have to recreate the trek the next day.

capturing the smile

Take two. We arrived at 12:15 for our 12:30 appointment, scheduled during lunchtime so the waiting room would be clear. Calder blew out his diaper in the interim but the staff kept insisting that the doctor was right around the corner so we held off changing him. Taryn went out to the car to pump while I waited. Roughly 30 minutes later the doctor got to examine a very stinky, very pissed off Calder, not that using Clockwork-Orange-type clips to keep Calder's eyes open would leave him very calm anyway. Calder's eyes were about the same, with no deterioration and ROP still in one eye at Stage 1.

And that's when Taryn called up with the news that the car battery was dead.

I ran out to the car to get it turned on and warmed up (it was frigid and had snowed the day before). Only a parking lot away from Sears, I headed over to grab a set of jumper cables. Unfortunately, the Christmas spirit was not infusing other people in the parking lot as none of the four people I asked were willing to lend a hand to jump a car. Eventually I resorted to calling AAA; they were super fast in showing up, jumped the car and evaluated the battery, noting that there was very little life left. Within an hour we were back on the road and heading for the holidays.

Don't worry, we take the train to work!

Friday, December 13, 2013

doctors, doctors

“So, if we have a baby, do you think you could work fewer hours?”
“Doesn't matter. He's gonna be so cute, I'm gonna eat him up on the first day.”
--Lily & Marshall, How I Met Your Mother

How true. Sometimes I come very close to eating him up! Of course, we avoid kissing fingers and toes since babies are likely to put those body parts in their mouths. But this whole childrearing thing, while extremely challenging, is even more rewarding, even at this early stage – we are finally getting some real smiles! And I’m not talking the I’m-in-a-state-of-hazy-dreamy-sleep smile, but the smiles that come as a reaction to our smiles, to baby talk, to a little tickle. I read that babies tend to smile at about 6-8 weeks, and Calder is now about 7 weeks adjusted, so he’s right on cue. Of course, catching one of those elusive smiles on camera might take some time - he moves from one mood to the next in a hot second!

At this point, we’ve almost been through our first round of doctor appointments and then some (minus the physiatrist – that one is coming up.)

Understanding the “master plan” for Calder’s progress is a little funny, though, since no one doctor is directing this show. I think part of it is that none of these doctors know Calder as fully as those in the NICU did. Whatever the reason, it can create some uncertainty for us, as we may have three doctors asking us when his next swallow study is scheduled but no one scheduling it (although we do have our own opinion on when it should be scheduled, and that’s sooner rather than later!)

second snow (missed the first!)
When we left the NICU, they opined that given Calder’s biggest issue we know of is his lungs, the pulmonologist would likely want to call most of the shots. This appointment occurred a couple weeks ago while Kraemer was in Ukraine, but thankfully my mom was along for the ride because we got lots of good info – the appointment went for more than two hours, and most of that time was spent with our doctor. Calder got a great report. We’re to wean him slowly from the various medications he’s on, and slowly wean his oxygen too. In fact, we’re already down from the 0.1 he came home on to 0.03 – we breezed right by the 0.08 the pulm recommended to 0.06 because the new regulator we are using can only be calibrated to 0.125, 0.06, and 0.03. And Calder continues to rock 99s and 100s on his monitor even at the lowest level. Before we left, Dr. K handed me his card and told me to email him directly any time, that it’s too hard to get through on the phone these days (and he is absolutely right about that.)

The G-tube, well, that one is another story. Total disaster area. Whereas it was once so beautiful, as our NICU nurse Laura put it, in the time between when we saw the pediatrician for the first time and the time our G-tube clinic appointment came around, the granuloma turned into something too solid to treat now. We’ll have to wait until they do the surgery to remove the tube, which will be AT LEAST a year down the road. For the tissue that continues to form, though, we will treat it with silver nitrate, this crazy substance that pretty much burns the skin into dissolution. The parts we treat are grey and yucky for a few days until they fall off. And that photo I am NOT going to post. There was also some concern that he had an infection at the insertion site, so we have had him on antibiotics for a week. The site seems to have improved, with the redness that remains being chalked up to irritation from the mickey itself. The dietician at the office told us to slowly increase his feeds by 5 mls a feed each week, to continue mixing it with formula, and to eventually use a pump because the amount of each feed will be so large that gravity alone won’t cut it – we’d be there all day.

Then there’s the ophthalmologist; the story of the logistics on this one can come later. But long story short, Calder has a little ROP left in one eye, but at his age, it shouldn’t get worse.

And so that’s where we stand today. But we have three more doctor appointments this week, so by next weekend, we’ll have a new story to tell. Hopefully a good one!

Sunday, December 1, 2013

happy thanksgiving!

Yay for family! Because traveling was out of the question, Thanksgiving came to us, with my family driving in literally every last ingredient needed for a feast. The fam all wanted to hold Calder, of course, which gave me a couple opportunities to take a few much-needed naps as I adjusted to my new schedule.

When folks aren't snuggling with Calder, he is practicing his tummy time and batting at safari animals on his new mat from his good friends in Boston. Although after the busy week he had, sometimes even the mat can't keep him awake!

Nothing like family for the holidays!