suck-swallow-breathe

The way Kraemer put it, this morning we were preparing for the “big game.”

In November, while Calder was still in the NICU, his medical team conducted a modified barium swallow study to ensure his suck-swallow-breathe reflex was functioning properly. As we found out then, he was silently aspirating (taking liquid down his windpipe without even the smallest cough), and this was a big problem, particularly given the state of his lungs. Too much liquid in there could easily evolve into pneumonia, which would unquestionably land him back in the hospital. We were given two options: (1) leave Calder in the NICU for about another 30 days, where the nurses and therapists would continue to work with him on his feeding, and test him again at the end of that month, or, (2) perform surgery to insert a G-tube and bring him home, with a swallow study scheduled two months out. We were encouraged (it didn't take much) by many of the nurses to go home, for a number of reasons. After electing this route, the doctors readjusted their estimate from two months til the swallow study to three, and at discharge, the therapist suggested a minimum of four months, perhaps as many as six.

The estimate kept moving out, and the second swallow study, the one that could potentially allow us to start working with him on his feeding again, seemed elusive. But once home, we were convinced we were seeing improvements in Calder’s ability to swallow. It may not sound pretty, but when he’d spit up, we would see him cough. That had to be a good sign, right? Corinne, a speech and language pathologist (SLP) herself, felt the NICU docs had been very conservative in their recommended time frame. This didn't surprise me as conservative seems to be Fairfax's MO (and I love them, I do, and conservative got Calder to where he is today!) We consulted further with the docs we see now that might have something to say about it, specifically our pulm, ped and GI doc, and wound up getting an order written in mid-January that would let us schedule it anytime.

We opted for today. Approximately 2.5 months since his last study.

There was a technician, a resident, an SLP and a radiologist in the room. The SLP explained that if he failed this study, they would not conduct another one for SIX MONTHS. Yipes. The technician had me seat him on a huge booster seat on an enormous x-ray machine. In fact, it was more like a booster seat on top of a booster seat on top of a booster seat; Calder was surely one of their smaller patients! I wish I had had enough hands at the time and presence of mind to take a photo. The SLP explained the straightforward procedure: she would feed him a little bit of the barium solution using one of their slowest nipples, pacing him as she went, which means she would only allow him a set number of sucks before forcing him to take a break by tipping it out of his mouth. Then she would hand it over to me.

Everyone stared at the screen to watch Calder’s documented attempt to suck, swallow and breathe. Being completely unschooled in what this reflex is supposed to look like, Kraemer and I were mesmerized but clueless as we stared at the dark stream shooting rhythmically across the screen with Calder’s every swallow. There was liquid, he was sucking, he was swallowing … but was it going down the right pipe? I strained in vein to see whether the fluid was flowing only where it was supposed to and whether the faces in the room betrayed an answer. Kraemer and I glanced at one another across Calder’s booster seat.

The SLP flipped the switch off. She said Calder did well. His reflex looked good. Did we have a speech therapist yet? And just like that, we were in business. They had seen no aspirating. Our first appointment is next week.

Our day at the hospital wasn't over, though. Next stop, GI for a new button. At Fairfax, we had been told we only needed to come to the hospital to change the button if it popped out by accident within the first six weeks. After that, they said, we could change it ourselves. Children’s National Medical Center has a slightly different policy, new in the last three years, which extends the time frame from six weeks to three months, and also requires us to have the tummy x-rayed for placement after the switch.

Sooooo, next stop, radiology. Again. This time didn't go nearly as smoothly. GI told us we were set, that we could basically waltz in. But after an hour-and-a-half wait (with a baby who had not eaten for nearly seven hours) and some rude staff at the radiology front desk, we called it quits. We checked the placement ourselves by venting him (attaching his tube to see whether any milk or, in this case, barium solution, came out – it did.) We left. And to be fair to Calder, he wasn't even the crankiest or hungriest at this point.

All in all, though, successful day. We’re excited to move on to some bottle feeding. We’ll know the plan next week.

Grateful

I learned recently that shortly after Calder was discharged from the NICU, three little lives were lost at our hospital in one week. I’d interacted briefly on a couple of occasions with one of the moms; the last time I spoke with her out in the lobby she was solely focused on getting back into the room and to her son’s side. I knew she was a dedicated and loving mom.

I don’t want to diminish or discount her grief by making it mine, but for days after I heard, I squeezed Calder a little tighter when I held him. It brought me back to the earlier days of our journey, when well-meaning folks would tell us that everything would be okay, but no one could really know what the outcome would be. I knew the uncertainty existed because for weeks, months even, I could see it in the eyes of the nurses. Yes, many preemie babies survive, and some grow up unscathed. But every baby is unique, and so is every preemie. We each have our own story, our own struggles, our own successes, and every day I try to be grateful for mine, both the highs and the lows.

one appointment at a time

Getting in a snowy goodbye before work

This past week Kraemer took Calder to his GI appointment – alone. A little chaos ensued (short story: he forgot his wallet, you need an ID to enter the hospital, and garage parking isn't free) but they made it eventually. I went in to work for an afternoon to wrap up some business related to my personnel annual review, which I timed to coincide with the retirement party of one of my supervisors. How fun it was to see my coworkers’ faces at the shindig! Many of them got to hear the same story about Calder over and over again as new folks joined the conversation. Lucky them. J

Fresh and clean!

Calder’s stoma is looking great. We have more or less annihilated the granuloma (with the silver nitrate at work, believe me, the word annihilated is appropriate). We have made it past the point, too, where we’d have to head to the emergency room were his button to pop out or, rather, if he yanked it out, which was never out of the realm of possibility. In other words, at this stage it’s assumed that the stoma has appropriately healed and that if we needed to reinsert it ourselves, we would have an easy tract to follow. Sort of like the piercing for an earring; once it’s healed thoroughly, you can remove the earring used and reinsert another one without worrying too much about mistakenly redirecting the hole. While nothing is wrong with the equipment itself, it’s time for a new mickey, so next appointment with GI our NP will take care of replacing it for us.

Two tired boys

It's the truth.

We are also going to try moving from seven daily feeds to six. Thus far Kraemer has handled the nighttime feeds so that I can pump and still get some sleep, as opposed to me taking care of both activities myself, in which case, let’s see … I’d never sleep. But Kraemer works, and it'd be nice if he didn't have a scheduled wake-up in the middle of every night on top of whenever else Calder decides he'd rather not be asleep. Our NP has helped us reconfigure our recipe for fortifying the breast milk so that Calder gets more calories per feed, thereby maintaining his total caloric intake per day, despite the reduction in feeding times. He’s been starting to spit up a little more anyhow as we've increased the volume of each feed, so perhaps his digestive system will prefer this method. We’ll soon find out.

Taking on the feeds

Getch and Grandad came to town this weekend, and Calder was ever so glad to see them! I’m not sure he left Getch’s arms for longer than a thirty-second stretch. (We suspect he was a little spoiled by the time they left!) Shortly before they arrived another little gift from them came in the mail: a Buzzy. Buzzy was designed to help ease the pain of being poked and prodded by numbing the area of the injection site via both cold and vibration. They tried it out at Calder’s appointment yesterday morning for his six-month immunizations and while it appeared to make some difference, I suppose there isn't much that can fully wipe away the prick of five needles.

Another preemie mom from our hospital recently shared with the group this post by another mom, in which she expresses how she wishes everyone hadn't always told her life was rosy after the NICU for all babies. I tried to take it to heart. In my mind, Calder has been rocking it. But he had a very early and very difficult start to life, and although I am optimistic, just like when we were still in the NICU, I want to be mentally prepared for anything. And cut him some slack.

That said, this coming week we have the G-tube mickey replacement and the swallow study: I've got my fingers crossed!

RIP, ROP

Bath time = happy time (1/3/14 ... I'm behind!)

My pre-homecoming theory has officially been debunked. I’d been telling friends and family for weeks I was hoping to have *more* time when Calder came home to do more things, like cook, write thank you notes, post blog entries, etc. Now that I’m home, I mostly just wish I’ll find time to take a shower! It’s probably no big surprise to most people that getting out Christmas cards turned into New Year’s cards turned into announcements, and even that hasn’t happened yet.

Anyway – the great news this week? Cross another diagnosis off the list. As of our latest trip to the ophthalmologist (as many times as I’ve typed this word, I don’t believe I’ll ever spell it correctly on the first try – one too many l’s and h’s, if you ask me), Calder no longer has any remnants of ROP. Perhaps the best part? Not only is it gone, but it won’t come back.  

Chillaxin

And Relaxin

We aren’t finished visiting this office, though. Calder remains at a higher than normal risk for other eye problems, like lazy eye or crossed eyes, so we’ll return in six months for another check-up. Still, this schedule is a vast improvement over the two-week, turned four-week, check-up schedule he had been keeping until this point.

Dr. T's Office

Because we see a number of specialists, we like to get multiple perspectives on some issues, for our own clarity. Some provide more details than others, and every once in a while they take slightly different stances on an issue. So this week at Calder’s “six-month” check-up, we asked our pediatrician her position on isolation, similar to what we spoke to our pulmonologist about the week before. When can we go to the store with Calder? When can we get on a plane? When can he hang out with other kids?

The answers didn’t surprise us but didn’t thrill us either. Dr. T told us she would not recommend plane travel for at least two years (with the caveat that two, although the age ofttimes given for various benchmarks related to preemies, is not a magic number, and that problems may persist beyond that age), that we should be staying out of public places not just through flu season but as long as he has the nasal cannula, not to mention it is supremely likely we’ll be isolation next flu season as well. She said he’d probably be a candidate again for Synagis. Eligibility for this vaccine against RSV is hard to come by, as the cost of one shot is in the ballpark of $1500. You need the shot monthly throughout flu season, and the dose – and therefore the cost – increases according to the weight of the child. For instance, this month Calder needed to be stuck twice to accommodate for his growth.

My view from the top

The only person Daddy wants to be twins with

Isolation has been tough. The only folks I talk to throughout my day are the bill collectors, my very kind colleagues who deal with my time and attendance at work (and that has been just a mess, figuring that out), and anyone even tangentially related to Medicaid (also a disaster and sometimes feeling like an exercise in futility.) The only outings we have together leave one of us outside with the baby while the other makes the transaction: purchases the prescription, checks out the eye glasses, etc. 

A worthwhile endeavor

Some days are tougher than others, but guess that’s just the way it is. One day last week I felt like I was doing everything wrong – knocking things over, breaking not inexpensive items, forgetting my head if it weren’t attached – and as I tried to calm Calder with the white noise of daytime television, this Johnson & Johnson commercial came on. In my sleep-deprived state, it didn’t take much to get me choked up. Of course, it’s all worth it, and I tell Calder every day how much I love him. 

Howling in the New Year

I’ve been catching a lot of flak for not posting much lately, and rightfully so. Keep on me! I am baffled to think that New Year’s was already more than two weeks ago.

Howling in the New Year

As with Christmas, we stayed home for the New Year and celebrated as a family. I’d bought board games and puzzles for just Kraemer and me, but between baby duties and pure exhaustion, the games never made an appearance. We whipped up lots of festive snacks, vegged out to a movie, wrapped up with the countdown coverage on TV, toasted to our year and the little man that came with it … and hit the sack. Like a true new mom, right?


Unsurprisingly, we have three doctor appointments this week. The pulmonologist, Dr. K, gave us a good report today. He gave Calder a listen and said everything was sounding “very good.” Translating this into a prognosis is difficult, but it mostly just means we can continue to try to wean him off his oxygen. With the threat of illness around, not to mention his need still to learn to swallow, or at least for us to be sure that he can, having the oxygen on hand is a practical safety net. Everyone, including you and me, drops in oxygen saturation at times, like when we sleep or when we fly. For us it doesn’t matter much, because we’re starting from the top. But Calder doesn’t have that luxury. Dr. K also said that when we start him on solids (timing dependent upon results of the upcoming swallow study) he may need a little help in the O2 department. So it sounds like the tanks will be around for a little while. There is no magic age where we know Calder can do without it; trial and error for a while.

one shoe

no shoes!

Calder seems to be somewhat accustomed to having the cannula taped to his face, though, so a little bit longer may not bother him too terribly much. That said, his new favorite game is to eat his hands, and I think he gets bonus points if he pulls his cannula into his mouth first, so mom and dad have to keep an eye out to ensure he isn’t always oxygenating his top lip.

We also tried to gain some clarity on his immune system situation. I was surprised to learn that typically the immune system is not considered fully developed until somewhere around when we’re seven years old. I’m sure the answer varies according to certain circumstances, sex being one of them, but it makes sense of course, knowing that little kids tend to get sick more frequently than adults or even older kids. Dr. K told us to put off flying with him for as long as we could manage. He knows we are anxious to get him to both our hometowns, and although Cincinnati is a reasonable drive, New Orleans/ Baton Rouge is more of a road trip than we can handle. He says there are two issues with plane travel. The first is obvious: infection. The chances of infection increase when a couple hundred people are packed like sardines into a tight space and breathing recycled air, especially during flu season. The second is the oxygen. Calder is on very low amounts by most standards; although the levels make a difference for him, they’d barely register with an adult. But you cannot fly with your own tank; you have to preorder one that meets FAA standards, and that oxygen only comes in two varieties: 2L or 4L, both much higher than what Calder needs, even with the expected drop in saturation while up in the air. Not to mention that each commercial airline has its own policy, and the process for approval and making provisions sounds anything but easy. Flying is unlikely to be in Calder’s future (and thus mine) for a long time.

So we're at home, we're at home a lot, we are at home ALL THE TIME. We watch a lot of football and cheer for all our teams. Granted, that didn't go so well this year, at least not so much at the end of the year for our Ohio teams. But we wear the gear all the same.

 

We gave up on the outfits and decided to go generic football. We root for the underdog and for snow days for Daddy.

"Daddy's All-Star"

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.

Opa!

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 décor, 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.

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!