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.


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 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!





Wednesday, November 27, 2013

Strings attached

Oy oy oy! Raising Calder is clearly a 24 hour job. The two of us trade duties caring for Calder himself but otherwise, we're on the phone making appointments, scheduling equipment drop offs, ordering medications, answering insurance and other medical-related questions. Calder came home on aldactazide, pulmicort, and polyvisol plus iron, and the pediatrician added ranitidine to help him cope with any reflux he may have. We mix most of these into the breastmilk, along with some formula, although the pulmicort we administer twice daily with a nebulizer. The large oxygen tank that we use most of the time is cumbersome, and while Kraemer can transfer it, the monitor and the baby up and down our stairs in one go, it takes Taryn two trips, which isn’t exactly ideal when you need to grab a syringe from upstairs after you’ve already set up camp in the living room. Bathing requires that you remove his pulsox and take care not to accidentally yank out his Gtube. Keeping him contented (and with his lungs, he shouldn’t cry for too long at a time) requires holding, which again, minimizes mobility given he’s attached to a tank and a monitor. And pumping. Let’s not forget pumping. So when Kraemer goes to Ukraine next week, Taryn's mom is sticking around to help out, thank heavens!

look, mom, a double chin!

Speaking of feeding, we’re getting really comfortable with using his Gtube. It isn’t especially glamorous, but it does the job. Most of the medical staff we’ve encountered think that in some ways, regardless of the swallow study results, the Gtube is a good thing for Calder because it means he can focus on growing and thus improving his lung capacity without the trials and tribulations associated with learning to bottle feed. Unfortunately, however, we are having a little trouble at the insertion site: Calder appears to be developing a granuloma. This isn’t pretty, but I’m going to show you what it looks like anyway. A granuloma is basically just extra skin tissue, and they (we’ve been on the phone with a NICU nurse, a NICU surgeon, a G-tube clinic nurse and a pediatrician) think that it’s forming because the body wants to close the space between the tummy and the mickey (i.e., G-tube button). Our pediatrician today said that she thinks we can wait until our appointment at the G-tube clinic next Friday to really do anything about it other than keep it clean. Supposedly it doesn’t hurt.


Thank goodness breastmilk is a miracle substance 'cause we've got it everywhere. When your son is hooked to oxygen, and a monitor, and then you add in the G-tube extensions with a couple ounces of milk and a squirming baby, accidents happen.  First Calder kicked my hand holding the syringe christening our couch. Next, having learned from my mistake of gingerly holding the syringe, he kicked the tube connecting the syringe to the button, and while I didn't let go, the tube disconnected from the syringe.  That one left me in the comedic position of holing the upright syringe as the milk poured into my lap, and Calder's belly juice blew outof the tube (I know...now were having fun!).

Because of Calder’s fragile immune system, and on top of that, the logistics of traveling with a preemie on oxygen and a monitor and being fed through a Gtube, we decided we needed to stay home for Thanksgiving. Taryn's mom, dad, Corinne and Matt are planning to join us, but a wicked winter storm is keeping them from getting in on time. But as we told them … take your time, we’re not going anywhere!

Saturday, November 23, 2013

Settling in

out for my first stroll. brisk!



It’s such a wonderful, wild change to have Calder home, to have him become entirely our responsibility, to not have to leave his side every night, to be able to hold him and cuddle him without the roughness and separation of a disposable yellow hospital gown. To be able to get to know what calms him, what frustrates him, how he likes to be held, his favorite temperature for his bath. What time he gets up in the middle of the night. :)

my new "bed"

The most-asked question of us since we've had our little guy under our own roof has been whether we got any sleep the first night. Annnnnd the answer to that would be a no. :) Many of the NICU folks told us Calder would need some time to adjust to his new environment before being able to really settle in. The real bugger is that his monitor is set to alarm when his oxygen saturation hits or dips below 94%, which is quite a bit higher than the 88% it was set to at the hospital. Especially at night, he does like to hover around 93 and 94. He could be in a very deep sleep, but the noise of the alarm rouses him. At that point, if he starts kicking even an iota, the pulsox won’t read properly anyway, which then too leads to the lovely loud beeping.


On Friday we met our pediatrician for the first time. I’d done a fair amount of scoping in order to pick one out – seeking input from NICU nurses and doctors, raising the issues on my very active Moms on The Hill listserv, calling the practices with a list of questions – but that scoping had not extended to an actual meeting. We really like her. Our early impression is that Dr T is knowledgeable, empathetic (she had a preemie, too), energetic, dedicated and friendly. There was a little confusion when we arrived at 11:30 am for a noon appointment, as though our case worker had provided us with the date and time of the appointment, there was no appointment on the practice’s books. The front desk did what they could, suggesting we either wait to see Dr T at 12:30 or see another doctor right at noon. We opted to wait. But when they explained the situation to Dr T, she told us to come back immediately, that she’d fit us in. This demonstrated to me that they understand how challenging logistics can be with a preemie and how time is precious (fitting in appointments between G-tube feedings and pumping, which both require space and equipment), and that it’s important not to leave a preemie hanging out in germ-heavy waiting room.

I found out about halfway through our NICU stay that the nurses read our blog. Surprise! I had not given them the blog address and had only spoken about it on maybe one or two occasions to one or two nurses. But how sweet! I was touched that they went to the trouble to find it, that they continued to read it through his discharge and that many promised they’d still be looking for updates once we were home. So I hope they are reading now, because one thing Dr T said struck a chord with both Kraemer and I: “your baby is well cared for.” She said this matter-of-factly and with admiration. We know he was, of course, because we’ve seen the care the NICU nurses took with our son. But I think her comment and tone speaks volumes.


And on that note, if all you fantastic Inova Fairfax nurses haven’t seen this letter (and below) printed in the Huffington you should definitely read it. I know it expresses how Kraemer and I feel and likely sums up how many of your other NICU parents feel too. You should be very proud of the work you do.


Dear NICU Nurse

september 13, 2013 by heather hucks
Dear NICU Nurse,

To be honest, I never knew you existed. Back when our birth plan included a fat baby, balloons and a two-day celebratory hospital stay, I had never seen you. I had never seen a NICU. Most of the world hasn’t. There may have been a brief, “This is the Neonatal floor” whilst drudging by on a hospital tour. But no one really knows what happens behind those alarm-secured, no-window-gazing, doors of the NICU. Except me. And you.

I didn’t know that you would be the one to hold and rock my baby when I wasn’t there. I didn’t know that you would be the one to take care of him the first 5 months of his life as I sat bedside, watching and wishing that I was you. I didn’t know that you would be the one to hand him to me for the first time, 3 weeks after he was born. That you would know his signals, his faces, and his cries. Sometimes, better than me. I didn’t know you. I didn’t know how intertwined our lives would become.

I know you now. I’ll never be able to think of my child’s life, without thinking of you.

I know that in the NICU, you really run things. That your opinions about my baby’s care often dictates the course and direction or treatment as you consult with the neonatologist every day. I know that you don’t hesitate to wake a sometimes sleeping doctor in the nearby call room because my baby’s blood gas number is bad. Or because his color is off. Or because he has had 4 bradys in the last 45 minutes. Or because there’s residual brown gunk in his OG tube.

I know now that you are different from other nurses.

I know that, at times, you are assigned to just one baby for 12 hours straight. You are assigned to him because he is the most critically sick and medically fragile baby in the unit. I’ve seen you sit by that baby’s bedside for your entire shift. Working tirelessly to get him comfortable and stable. Forgoing breaks while you mentally will his numbers to improve. I’ve seen you cry with his family when he doesn’t make it. I’ve seen you cry alone.

I’ve seen you, in an instant, come together as a team when chaos ensues. And let’s be honest, chaos and NICU are interchangeable words. When the beeper goes off signaling emergency 24 weeker triplets are incoming. When three babies in the same pod are crashing at the same time. When the power goes off and you’re working from generators. In those all too often chaotic moments, you know that time is more critical in this unit than any other, and you don’t waste it. You bond together instantly as a team, methodically resolving the crisis until the normal NICU rhythm is restored.

Yes. I know you now. I’ll never be able to give in return what you have given to me. Thank you for answering my endless questions, even when I had asked them before. Thank you for your skill, you are pretty great at what you do. Thank you for fighting for my baby. Thank you for pretending like it was normal when I handed you a vial of just pumped breast milk. Thank you for agreeing to play Beatles lullabies in my baby’s crib when I was gone. Thank you for waking the doctor. Thank you for texting me pictures of my sweet miracle, even when it was against hospital policy. Thank you for crying with me on the day we were discharged.

Most of the world still doesn’t know what you do. They can’t understand how integral you are to the positive outcomes of these babies who started life so critically ill. But I do. I know you now. I will never forget you. In fact, our story can never be told without mentioning you. So the next time you wave your access card to enter the place that few eyes have seen, know that you are appreciated. I know you, and you are pretty amazing.

Your fan forever,

A NICU mom

Thursday, November 21, 2013

Day 143: LET'S GO HOME!!

Annnnd the gang is home.

The whole thing felt a bit surreal, which isn’t inappropriate, given that’s the same feeling I had pretty much the moment I nearly keeled over in the halls of Inova Alexandria on my way to the L&D floor five months ago.

When we arrived at the hospital today, we met briefly with the company providing Calder's G-tube supplies. I ran to the lactation room for a short stint while Kraemer talked to the social worker, and then to Dr B, who provided discharge papers. Ashley came in solely to give Calder a going-home present (a giraffe WubbaNub, which he loooves, and it matches his jungle nursery!) We snapped a photo with Sumaya, who walked with us all the way down to the lobby, and Eileen made sure Calder had a hat on his head before going out into the cold. (How'd Eileen get out of a photo?!)

Bye, Sumaya. I'll see you soon!
And then just like that, we were waving goodbye. To the nurses in Room 4, those who had cared for Calder day in and day out and those who’d had him just a time or two but knew him well. To the other NICU parents. To the staff at the front desk, to the staff in the lobby and to the staff in the parking garage, all whom knew us well.

Leading up to that moment, I had felt a little anxious about taking him home. I was sad to say goodbye to new friends. I thought walking out of there I’d be experiencing a mix of emotions. But instead, I was just beside myself giddy to be that parent today, the one carrying the car seat and everyone grinning at you from ear to ear, because you were getting to take your little one home.


(Yes, the video is only a couple seconds ... and sideways.)


We learned that Calder loves car rides. I kept him company in the back while Kraemer drove us home. The ride was uneventful, except for a few beeps and a missed exit (believe me, in the traffic on 395 and with an infant in the back seat, it is incredibly more prudent to just mis the exit. I wish more people followed that tactic.)

I’d been dead set on balloons, but in our rush to drop off some breast milk (success, at least a couple of bags!) we had no time to make an extra stop. When we got home, friends had taken care of it for us.

Thanks, Auntie Veena and Uncle Akash!



Welcome home, Calder. We love you!


post-NICU crash course

Yesterday was a whirlwind! In order to fit in all our training, Kraemer worked half a day before we headed to the hospital for 7.5 hours straight of instruction. We skipped lunch, which I’m rarely known to be okay with and is probably why we were both so grumpy by the time we sat down close to 9 pm for our last dinner out.

I'm going home tomorrow! Whoopee!

Before we even left the house, the company providing Calder’s oxygen came by with a couple tanks and a compressor. I'm not super excited about having tanks of oxygen hanging around the house, but that's the breaks. And when you get down to it, I'd probably tell you I appreciate the back up should his lungs get into some trouble. The guy returned barely twenty minutes after he’d left to replace the compressor with another tank. Calder’s orders had been rewritten from 0.2 to 0.1 liters per minute, and the compressor doesn’t go that low. A good start.

We kicked things off at the hospital with a safety and CPR class, where my biggest take away was the risks associated with RSV. If the goal was to scare us into wanting to take every safety precaution possible, they succeeded. They told us that when we had to tell people they couldn’t snuggle with our cute little newborn, we could make them the bad guys, and they even typed us up a letter to share with family and friends. What it really boils down to is that Calder has no immune system to speak of, and his lungs are still in very bad shape, so the slightest sniffle in you or me could be serious enough in Calder to land him back in the hospital. We won’t be able to have guests outside the family over for a while, and even having family is questionable, so we are fully stocked on hand san.


Next, the company who delivered Calder’s oxygen that morning sent a representative to the hospital to teach us how to use his pulsox and monitor, and how to use the oxygen tanks. From there we spoke with the social worker about Calder’s home care. Once we got to the bedside, there was a line of folks ready to meet with us. The dietician told us the schedule for his feeds and how to mix in the formula to fortify the breast milk (breast milk is generally known to have 20 calories in an ounce, and the doctors want it bumped up to 24 calories). The physical / occupational therapist ran through some more advanced exercises for Calder, beyond what she’d taught us earlier in our NICU stay. She’d pulled some great – and quite a bit of – material, telling us she’d spent the time doing that because she knew we’d spend the time on the exercises after seeing Kraemer work Calder out when we’d come in. J The speech therapist ran through the long-term plan again for getting Calder to be able to eat by mouth, telling us that the pulmonologist would probably have a dietician on his team that would work with the GI doc. We then got the scoop from the case worker, who had spent all Tuesday and Wednesday on our case, setting up appointments and contacting providers, ensuring folks were in network, and helping us to know what follow up actions we needed to take once Calder had been discharged.
 
Drew and Calder. Bros.
Here's lookin' at you.

Thanks, night nurses! (Drew, Laura, Megan) 
Last squeeze with Laura and Ashley.

In the middle of our receiving line, Dr. Ascher stopped by. Dr. Ascher is the chairman of the Department of Pediatrics at Inova Fairfax, which pretty much makes him head honcho. He was accompanied by Dr. North, who heads the NICU, and several other folks, who, judging by their suits and the way the staff eyed them all, I can only imagine also hold pretty high positions in the system. They wanted to know how our stay was, prompting us with questions about various aspects. Of course, our overall report is that our stay was stellar – every single one of our primary nurses was fantastic, and we had good experiences with staff from the parking lot in – and we passed that message along. But in the midst of such a hectic schedule, and having not prepared for the visit, I’m sure our feedback could have been more detailed. 

Everything is still a go for a homecoming today! We are hoping to break him outta there around 2pm.

Tuesday, November 19, 2013

splish splash

Even though we’ve been comfortable with checking his temperature, changing diapers and handling his oxygen for quite some time, the NICU nurses have to be sure we can handle all aspects of Calder’s care before they let us whisk him away.

Saturday night we had the privilege of giving Calder his bath. It’s almost surprising that we hadn’t done this yet, but the nurses tend to take care of it in the morning, when we’re not yet usually in. Although we’d been told he relishes his bath, he was very vocal in letting us know that was not in the mood. He’d just received his polio vaccine, and even though I’d managed to calm him down immediately after he was stuck, the jab must have snuck back up on him, and he made sure to tell us about it. (And lucky for us, he’s getting another vaccination every day until we’re outta here.) I’d heard repeatedly from friends about how scary the first bath is, and while I admit to feeling relatively clueless about the process, no matter how simple you think it may be, I’m sure having a nurse standing beside me helped make it a success. We were told that kids with a G-tube can do everything a kid without one can do, including being fully submerged in water (although we’re still at sponge stage ourselves); you just have to make sure it’s plugged before you get started.

He could be enjoying this more.

But he was pretty happy with
the subsequent cuddle session.


Sunday night we were asked to take charge of his feed. This was the first time he’d be fully fed on a gravity feed, the way we will also be doing it as home. This means that we let gravity do the work as opposed to a pump; you just fill the big syringe and hold it up until it empties into his stomach instead of programming the pump to dispense the milk over a certain period of time. The higher or lower you hold the syringe controls the speed of the flow – that and his tendency to bear down, in which case the flow doesn’t go very fast and may actually reverse (watch out for milk!) We went a bit quick, and the milk was a bit cool, but what probably did us in was the fact that we had Calder on his back throughout the feed. When Kraemer picked him up once we’d finished, he wound up the recipient of some very milky spit up. May be the first time, but I’m sure it won’t be the last.

Before we left, we situated Calder in his car seat in his crib in preparation for the Car Seat Challenge. He passed with flying colors! This means that we can take him home in the infant car seat we purchased, as opposed to a car bed, which would allow him to remain flat. Quite frankly I’m not sure whether there is a huge safety disparity between the two in the event of a collision, but it is nice to know that he can sit in his seat – or his swing or his bouncy chair – without experiencing a brady or apnea.

Being an angel for mommy
... or plotting mischief
On Monday, Drew was the first one to wish me a happy birthday on the actual day itself, when I called him at 4 am to check on our little guy. And as soon as we walked in that night, Megan greeted me with a “happy birthday” wish. How'd we luck out with such great nurses? In fact, Calder (read: day shift nurses) had made me the sweetest birthday card, complete with his latest footprints … which are considerably bigger than the ones we took when we was about a month and a half old. On Monday night we brought in his prescription for his nebulizer treatments so that we could learn to administer it ourselves. There isn’t a whole heck of a lot to it, and this time, Calder was as calm as he could be in my arms, just like they said he usually is when given this treatment.


As far as we know, we are still on track for a Thursday homecoming. Today was my last day of work, as starting around lunchtime tomorrow, Kraemer and I will be in various trainings and meeting with multiple specialists regarding his follow up care probably until the day shift wraps up at 6:30 pm. (Between you and me, when I first decided I’d take the day off prior to his homecoming, my plan was to use it to sleep! So much for that plan.) His eye exam today revealed that he still has some degree of ROP; it really hasn’t gotten any better or any worse than where he was two weeks ago. That’s not fantastic but not ideal either, so we’re already scheduled for another consult in three weeks. Tomorrow we’ll meet with the pulmonologist, the occupational therapist, and the nutritionist; take a two-hour CPR class; take a course on his monitor,; talk with the companies who will be providing our durable medical equipment for his oxygen-related supplies and G-tube supplies, and probably more. Whether we’ll be feeling up to the cocktail hour the end of the day I’ve been hankering for is anyone’s guess!

Sunday, November 17, 2013

ETA:

The problem with waiting six days between posts is that SO MUCH HAPPENS in that period in the NICU that some stuff that did happen has now unhappened.

For starters, the *very* exciting news is that we have an ETA on the books. Calder’s homecoming is scheduled for this Thursday, November 21. If it doesn’t happen Thursday, it’ll happen the following Monday, they say, as they don’t like to discharge on Fridays and Saturdays since pediatrician’s offices are generally closed over the weekend, and we’ll need to take Calder to see the doctor within 24-48 hours of his discharge. (That’s what I said – so soon? We will have just broken him free!) We are primarily waiting for him to receive his full set of vaccinations and pass a couple tests.

Kraemer and I have been trying to pull everything together in the meantime, although it’s virtually impossible to accomplish that on a Sunday (the special pharmacy, the post office, the milk donor depot, etc.) Which leaves me feeling overwhelmed but helpless.

But I think the real reason I’m feeling listless and distressed is because Calder is back on oxygen. This may come as a surprise to you all since I never got around to telling you that he was even off oxygen. Early this past week (Tuesday?) Sumaya decided to give him the “room air challenge.” (With all these “challenges,” sometimes I think he’s a contestant on Double Dare.) This means they took off his cannula and monitored his oxygen saturation levels to ensure he could keep them up on his own. When we learned they were testing him, I tried not to get my hopes up. Kraemer and I had seen him doing so well with his cannula displaced for prolonged periods of time – he had a knack for ripping it off his face or at least pulling the little tubes from his nostrils; sometimes we found them up by his eyes, which couldn’t have been comfortable either – that we were secretly optimistic he wouldn’t need the tank at home. When we arrived at the hospital a couple hours after they’d started the test and there were no tubes attached to his face, I was ecstatic. He looked … normal. And his sweet cheeks were relieved of that horrible tape that only the night before had left him bleeding when he yanked it off. But I was hesitant to get my hopes up; I’ve been around the NICU block. Despite my hesitation, after he’d been off the oxygen for four or five days, I started to let my guard down. No oxygen? No pulsox? No leads? None of this at home? After the time we’ve spent in the hospital, this prospect was almost too good to be true.

And so, when his nurse Ashley called me this morning to talk breast milk and also reluctantly gave me the news that they were putting him back on oxygen, I was bummed. He had begun satting more regularly in the low 90s as opposed to the mid to high 90s, so, better safe than sorry, they decided to give him back his whiff.



Putting things in perspective, this is really no biggie. He is coming home, after all – what’s a little tank to carry around with him for a month or two (or a little more)? The tape isn’t really that bad, and now we’ll have a monitor to … put our minds at ease. J

Perspective schmerspective, there is nothing wrong with a little retail therapy. We still need all kinds of things for Calder; I’m on Amazon so much it might as well now be my homepage. My shopping habit has been greatly facilitated by our friends and coworkers at both USAID and the State Department. Each of our offices feted us with a nice get-together. Kraemer and I were blown away by their generosity, and after months of support from them all, this was hardly necessary but not out of character.
I've got this.
Some other great news? My dairy-free endeavor appears to be paying off, at least so far. Calder has been receiving breast milk for the last several days with no apparent ill effects on his digestive system. He is just under eight pounds, though, so they have plans to start fortifying my milk in the near future. I make so dang much of it that I think it gets spread a little thin. That, and I know I’m a little short on nutrients sans dairy. Although I’d been hoping to get to Sticky Fingers this weekend so that I’d have some birthday treats for tomorrow, Sticky Fingers up and came to me, first last week from one of our good friends in town, and then in the form of a cookbook from one of my fantastic coworkers and his wife. I’m not sure whether my family is excited or frightened that I’ll be trying out at least two of these recipes for them over the Thanksgiving holiday.

Monday, November 11, 2013

innie,outie...throughie?

Calder and the top notch surgical team did great in surgery yesterday. He now sports an extra belly button that resembles a Grolsh cap with a hole drilled in it through which the food can pass directly to his stomach.
my new belly button
Taryn and I are quite excited with how everything has proceeded but Calder still has a mixed opinion on the whole process. They slowly weaned his pain medication until he woke up and started triggering the ventilator on his own, then they extubated him around 5 pm yesterday.  After being extubated Calder definitely tried to cry but could only manage a sad little whimper. Once he was off the vent and breathing on his own they started the pain medication back up but at a much lower dose and Taryn rocked him back to sleep. Calder is also good to go on being fed again so they should begin to feed him through the button today, meaning he'll once again get that full feeling in his stomach. He'll get a couple of meals of Pedialyte (sugar water) before we switch and test out how he responds to Taryn's "now in dairy-free" milk.  Finally, the best news of all is that we're thinking Calder is only about ten days away from his triumphant homecoming!