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 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


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


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!

Sunday, November 10, 2013

field trip! to the OR

As we were making our way to the hospital on Friday afternoon, the doctor called. I was a little surprised -- it's been awhile since we've received such a call -- but as he explained the reason for his call, I was not. (I guess Google searching has some benefits after all.) After the imaging of his GI tract, Calder had been diagnosed with pyloric stenosis. Treatment requires surgery. This isn't all bad. It explains why Calder has been vomiting, and the timing means that the surgeon can address all Calder's operable issues in one fell swoop. 

Calder is scheduled to go into the OR this morning sometime between 8 and 9 am for three procedures: esophagogastroduodenoscopy (EGD) (insertion of the G-tube), pyloromyotomy and hernia repair. When we spoke to the surgeon who will be performing all three procedures, she explained that to fix the pyloris, she won't be cutting anything down to make space but rather spreading the muscle apart. She told us she has never had to operate to re-address the condition, that this should be a one-time fixer-upper. The other two procedures are also ones she has performed countless times before. None of them have any very unique high risks associated with them, although they all still carry the risks associated with any surgery.

Calder will be put under completely and therefore will need to be re-intubated since he won't have the wherewithal to breathe. Given his history and the condition of his lungs, the doctors are hopeful that they'll be able to extubate within 24 hours -- they certainly don't want to further damage his lungs by leaving him on the machine any longer than they have to. He has two new IVs through which they are administering nourishment and, soon, anesthesia and other medication. Sumaya warned us that he'll still be out when we see him afterward, so we should be prepared to see a very drugged up little man. Calder will be operated on for about two hours, plus time before and after for preparation and completion, like getting the anesthesiologist in there and then settling Calder back in in the NICU. 

Speaking of, Calder has a new room! Though we have been in isolation the whole time (the gowns and the gloves), we have still been in a big room with about 15-20 other babies. A couple days ago the isolation room opened up, so his nurse Eileen confiscated it on his behalf. It opens right up into the main room and yet it is incredibly quieter ... and comes with it's own little TV in the corner, perfect for football fans. We are no longer tripping over his swing. We are glad this means that when Calder comes back from surgery today, he'll be able to get some sleep!

Friday, November 8, 2013

If you live in a government town, you might as well be a G-man

Calder has decided to keep his nurses on their toes. Yesterday he baffled Eileen by actually coughing the feeding tube inserted through his nose ... out of his mouth. The tube was reinserted and an X-ray taken to ensure there was proper placement. And yet, he chose to do it overnight AGAIN for Megan, along with throwing up six times in a row.

No one is too concerned yet. The charge nurse thinks that despite the X-ray, the tube had just gotten a little out of whack, and that perhaps too there was just too much air in his stomach. My Googling habit produced some info on a condition called pyloric stenosis, commonly associated with projectile vomiting, where an inflammation of muscles leading from the stomach into the intestines keeps food from moving effectively on its journey through the system. Megan told us it's a little soon to believe this to be the cause but that they'll definitely be keeping an eye on it, as always.
some of Calder's superheroes
In terms of the question of his neurological development, we have decided (at least for the moment) to forgo the MRI. The two doctors we have spoken to thus far are both ambivalent. The MRI could tell us whether and where in the brain there are abnormalities -- but it would not be able to pinpoint how or when those abnormalities would manifest themselves and therefore would not have any affect on his current treatment. In other words, even if the scan showed complications, we couldn't do anything about it.

However, we have decided to go forward with the G-tube. There is some argument that his neurological development (any complications aside) would be advanced more quickly at home. As I've mentioned before, we feel he is getting phenomenal care at the hospital, but the nurses themselves have assured us he would get more attentive care at home; they each have other babies they care for while also tending to Calder, plus our home environment would be much quieter and dimmer than the typically bright and boisterous NICU. The doctor estimates that barring any complications, Calder would be home within about 10 days of the surgery, which sounds very good to us!

Wednesday, November 6, 2013

not so fast

long day for all parties
Just when we thought we would be bringing our baby home -- miraculously without serious complications -- we were again reminded that this is a long road we travel.

Calder had been making very steady progress in the feeding arena. Just yesterday they'd increased the amount of his p.o. feeds from 20 ccs to 30, increased the frequency of the p.o. feeds from every other feed to every feed (so every 6 hours to every 3 hours), increased the total amount received to 65 ccs, and decreased the time over which he received the food through his tube to 30 minutes from 60.

He had adjusted to these changes fairly well, although taking a bottle at every feed had definitely tired him out.

To ensure he was doing as well as he seemed, and because his homecoming seemed to be closing in, they decided to conduct a swallow test. This is accomplished by mixing barium with his formula so that it shows up on an X-ray video as he drinks it, making it possible for them to tell where the liquid is going. When I called today to find out when to restart bringing in my now non-dairy breast milk, the test results were only a secondary question in my mind. Turns out it's a bigger deal than I was prepared for.

The results showed that Calder was silently aspirating after only 3 ccs of formula. This means that he is aspirating -- sending his food "down the wrong tube" -- without demonstrating any of the signs that would be expected to present themselves when aspiration occurs, like coughing, choking, spitting up, etc. The fact that it showed up this particular time does not prove that he's been doing it every time he feeds, but chances are high, and the risk is too high to continue trying to feed him by bottle. Aspirating milk / formula into his lungs could set him back significantly, especially given the risk of contracting pneumonia. 

The doctor told us that this brings us to a crossroads sooner than we'd expected. We have a choice. We can either elect surgery to insert a g-tube directly into his stomach, an operation that is a risk itself, as is any surgery, but also means he would need to be intubated, at least briefly, and how quickly we could get him extubated again isn't predictable. Or we can choose to leave him in the NICU for at least another four weeks, being fed through the tube through his nose, until they are willing to try feeding him again by bottle. Though in the latter case, it's not a certainty that he'd no longer be aspirating by that point anyhow, meaning he'd wind up with a g-tube even then. 

The more disconcerting part for me, however, is that the doctor then recommended an MRI. They offer an MRI prior to discharge, and when we'd questioned another doc about it over the weekend, the message was that because there isn't much to be done based on the results, he wouldn't recommend it for us. However, this was before we knew Calder was aspirating. His aspirating shows that he is not protecting his airways, which could indicate neurological abnormalities, and this, taken with other signs, has given them cause for concern. The other signs had previously seemed no big deal to them, or so we thought. I'd asked at least four nurses about the fact that he rolls his eyes up in his head sometimes; I was told he was still gaining control over his eyes, and was also probably tired. His stiffness was attributed to the length of time he'd spent on his back, intubated. His [very occasional] spasms were seen as quite normal. Now, however, they could all point to a problem with the brain that is quite a bit more serious than expected. 

Kraemer and I must decide on both the surgery vs more time in the NICU and whether we want results from an MRI. We still have lots of questions and are scheduled to meet with the doctor today to discuss further. If we choose to operate, Calder may be home as soon as November 18 -- what a birthday present that would be! :)

one of my favorite looks:
the "interested" face

Sunday, November 3, 2013

happy halloween!

Calder is a porker! As of Halloween, he was weighing in at 7 lbs, 4 oz. As one nurse put it, his costume was appropriate. :)

down on the farm

Kraemer's costume scared the tiniest trick-or-treaters in Capitol Hill but was a hit at the hospital.

The nurses were proud to tell us that a specialist who came to examine Calder the other day guessed that he was a term baby. And today, we were told we better get our buns in gear and finish up whatever we need to finish up because the nurse was predicting Calder would be home pronto. She also said not to expect a week's notice, that many times parents only get two days warning. Time to get busy.