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!

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.

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!

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!

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!

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

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.