Thursday, October 31, 2013

big strides -- the video entry.

Calder is really moving it! For the first time, this week the nurses have begun to be willing to say that Calder will come home “soon.”

Loving his puppy duds,
from Laura, one of his primaries
Calder moved to “the wall” on Monday. This means that while he’s still getting oxygen, it’s just a whiff. His oxygen level is now constantly at 100%, but that’s because his flow is down so low, to 0.1 (he started at 0.2 on the wall) that anything lower would hardly make a difference. He also no longer has to deal with a humidified flow, which cuts out his occasional desat on account of a nice fat drop of water trickling down his nasal passages. The nurses have not yet tried him on the “room air challenge,” meaning testing whether he can go without any oxygen for a specific period of time without desatting to a specific level, but given how long he spends with the cannula pulled out of his nose on his own accord, he might just pass. Fingers crossed, as this would mean he would not need to come home on oxygen. I’m still bracing myself for a tank, but wouldn't it be so nice if he only came home on a monitor?

On Tuesday, we learned that his eyes have both improved enough to be considered Stage 1, back down from Stage 2.

You could say the biggest thing standing between him and home is his feeding. But he’s making tons of progress here, too, much more than the nurses expected for a kid who had a very uncomfortable breathing tube down his throat for as long as Calder did. He started with two p.o. (per os, “by mouth” in Latin) feeds per day at 10 ccs (with the rest given to him via his feeding tube) and is now up to four at 15 ccs; the rest he still gets through his oral feeding tube. Kraemer and I take turns feeding him. You can tell he’s getting used to it. He only needs a little chin support, and he wastes no time in downing whatever he’s given. I swear he took his bottle in five minutes last night. We’re told that once he gets to full feeds in his bottle (currently 60 ccs), he’ll need to be able to down it within 30 minutes – any longer and he’d be burning more calories than he’d be taking in. Another “challenge” he faces before being discharged (without a g tube, anyway, a tube that would be inserted through an incision in his abdomen into his stomach.)

He continues to get physical therapy daily from a specialist, and Kraemer and I try to execute the routine when we go in every day, too. Calder is a grunter, particularly while exercising.

Amidst all these changes, Calder has become quite somber lately, though I prefer to consider him contemplative. Sometimes he's a grump, too, though he tends to calm right down with a little mobile lullaby and a paci.
Serious? Or pensive?

A rare smile

Last Friday night I officially went non-dairy. It hasn’t been TERRible but it sure hasn’t been easy. It seems every dinner we dream up involves dairy in some capacity. To ease the transition, we stopped on Sunday at a vegan bakery, Sticky Fingers, that I dare say – despite the fact that it’s a good 20 minutes north of us – will become a regular weekend stop for me. I wish I had a photo. I walked out with a pile of boxes: two cookies, a brownie, four cupcakes and a piece of pumpkin pie. Envision me peeking over the top of the stack. I know it doesn’t sound healthy (okay, it’s not, dairy or no) for a person to eat all this in the span of a week, but I am *transitioning*!

I've got my eye on  you.

Friday, October 25, 2013

the eating machine

Calder has been making some awesome strides. We haven't yet heard when he will get to come home, but one of the last major hurdles for him is feeding. Preemies, who struggle to simply breathe, apparently have trouble coordinating the sucking, swallowing, and breathing required to drink from a bottle or breast. Due to the vortex caused by the air flow coming through the cannula, the doctors were waiting for the flow to drop below 1.5 liters. Calder is at 1.5 and he is ready to eat!

As you can see from the video the boy is an eating machine...granted, he does get so excited that he forgets to breathe, but when you've never tasted ANYTHING in your life before, milk has to be a party for your taste buds. The nurses call slowing him down so that he does remember to breathe "pacing," and to further the analogy, Calder is clearly a sprinter. The first few feedings the nurses use a number of tricks to get him to slow down. They don't tip the bottle all the way so that there isn't as much milk flowing at once, and when he goes too long without a breath they tip the bottle so it's just the nipple without any milk. This is supposed to teach the baby that when you don't get milk, you stop sucking. It did not work for Calder the first time; in his mind if sucking produced food, it should do so again, and thus Calder didn't stop sucking even with the bottle completely removed from his mouth.  He's clearly not afraid to put a bit of effort into acquiring what he likes.

As I'm writing this he's up to his fourth bottle feed (he gets two every 24 hours), and he has finally started to take small breaks in-between sips. Knowing his mother, I have never been very worried that Calder would struggle with eating. Even when he was barely two pounds, and we would dab a Q-tip in some milk to rub around his mouth, he would smile and lick the cotton.

In other news, he's up to 6 lbs 10 oz and we're starting to do physical therapy with him.  I've yet to get any video but I definitely grab a laugh every time we have a workout session.

Monday, October 21, 2013

happy original due date!

For several weeks now, I've been receiving email completion coupons from my registries leading up to Calder’s original due date, today, telling me to hurry to finish my nursery, which is really just a weird email to receive weeks – months – after your son has been born.  (Naturally, we’re nowhere near being ready.)

Calder must have known today was a special day because he's doing great! He had been sitting at a flow of 2.5 liters for a few days while they fooled with compressing his feeds, but they took him down to 2 yesterday and 1.5 today, and he's been at room air most of the day. By yesterday he was down to feeds lasting 1.5 hours every three hours; Soumaya told us that today he got so hungry that while propped up in his Boppy he managed to stand himself up in indignation ... but wound up flopping back down when he couldn't hold himself up. His gas this morning was beautiful, as the nurses like to say, and as they have been for a couple weeks now, with C02 at 57, pH at 7.37 and hematicrit at 39. He is 47 cm long now, his head circumference is 33 cm, and he weighs 2785 g. So after several days of losing weight, he's back up over the six-pound mark. Per usual, he has another eye exam tomorrow.

Though it’s been a long time since we've paid much attention to his heart rate, on Sunday morning Calder had two “spells,” meaning he brady-ed and was simultaneously satting very low, once in the 40s and once in the 50s, I think, which is quite low compared to the 90s we need to be seeing. There was no apparent reason for these spells, especially given that during one of them he was fast asleep. (Earlier in the day he’d brady-ed as well, but that practically doesn't count since it was only after he’d pulled out his feeding tube – ah-gain – and it’s common for the reinsertion of the tube to trigger that reaction.) This isn't necessarily a setback, per se, but a reminder that his lungs still have a ways to go. He's still been generally pretty fussy, and it takes him some time to fall asleep, but when he's out, he is OUT.

The nondairy diet is on hold. This weekend I’d intended to talk more with Dr. D or our primary day nurse about the recommendation to start the diet now that I’d had a chance to think on it, and because I hadn't yet spoken with the doc about it. I wanted to hear the plan for specifically when to start, since our primary nurse had only really asked whether it was something I’d be willing to try, not to try this very second. Or perhaps that's just how I interpreted it. When we were in this weekend, Dr. D was off duty, so I spoke instead to Dr. F … who told me to hold off.  It's so difficult to identify the culprit in my diet that they’re bringing him “back to base” on formula and then reintroducing breast milk “soon,” hopefully without changes to my diet. The Dr. went so far as to say it’s not healthy for me to work toward such a diet [without being meticulous about replacing the nutrients I’d be missing.] Stay tuned. I think the attempt on my part is nearly inevitable, and I've now heard from several of you about how you did it too -- and how it is actually good for you, contrary to the doc's perspective...everyone is a food critic.

This weekend Calder rooted for both of his teams (we’ll skip any discussion of how those teams did, only to say that they were close and that there are still some big games coming up!) Although Kraemer and I had sported our own gear on previous occasions, nothing grabbed the nurses’ attention like this onesie and helmet hat. We've now had many a conversation about allegiances and know who in the unit is an Auburn fan, a Sox fan, an LSU fan, who could care less, etc. Turns out our current preemie neighbor is a Bucks fan, too. O-H!

I can't believe how many of you keep up with Calder, still. After 16 weeks! We're so grateful. Sometimes I wonder whether maybe keeping up is too much work, whether 16 weeks is enough, but then someone writes me a quick note letting me know they're thinking of us, and I know you're still reading. Hopefully soon you can meet the protagonist in person!

Thursday, October 17, 2013

milk ... does a body good

you want me to do what?
Yesterday was a big day for us. We gave breastfeeding a go. With his flow down now to 2.5 liters per minute, the pressures are low enough that we can try. There is still the risk that he could aspirate some milk, so to play it safe, I pumped immediately prior to the attempt – the nurses told me they didn't want me drowning him, which with my supply, was a fair concern.

I was fascinated by the lactation consultant’s early instructions, which were to simply lay him upright on my chest, skin to skin, and that he would smell the milk and crawl to the appropriate place. While he didn't get this at the first go, a little later in the evening, he did, rooting big time and pawing his way over (note to self: ask the nurses to file down his fingernails!) Of course, I probably shouldn't be surprised at what amounts to basic instinct.

In any event, he did successfully latch after several attempts. You would have thought he’d just walked on the moon for all the cheering Kraemer and I did. He didn't make it more than a couple minutes before tuckering out, but given the tough road I've been prepared for by other moms, preemie or not, I felt grateful for this baby step.

Nothing about this journey is without complication, and it seems that it is finally time for me to try to go dairy free. Allow me to overstate the degree of this catastrophe for one moment: things are about to get real. Custard! Butter?!! Some breads? CHEESE??? Cheese, are you sure? And this isn't just butter as a condiment. Butter is in cookies. Butter is in casseroles. Butter is in sauces. My sister-in-law kindly reminded me that Graeter’s would now be off limits. In short, Calder’s stools have improved, but the reintroduction of breast milk every time starts to loosen them up. His bum is a bit red, and he’s been losing weight for the last several days. And so, one of our primary nurses and the doc asked whether I'd consider going dairy free. I plan to use this weekend to stock the kitchen with the necessary supplies, inform myself of what not to eat (I've heard I'd be surprised) and give it all a go starting Monday. We won’t see results in my diet for two weeks, they tell me, and for another week or so in his.

The other big news these days is that Calder is sometimes down to room air, an O level of 21, in his cannula. Not always – he tends to average 24-25 – but often. The first time he achieved this feat was overnight this past weekend, when a nurse who had never cared for him was on duty. It was 4 am when I called for my daily early morning update, and the nurse began the conversation by telling me he was being fussy, which I inferred she felt a bit distraught about, and then as an afterthought dropped that he was anywhere from 21 to 28 on his Os. I had to ask her to repeat herself. I then assured her that no one had ever given me that news before, fussiness be darned.

Despite his truly awesome progress, we did get a reality check when a nurse again predicted that he'd go home in four, maybe five weeks ... and she basically said only if everything continued to go swimmingly. Still crossing our fingers for Thanksgiving!!

Tuesday, October 15, 2013

marching along

Until now Calder has been on constant feeds through the tube passing through his nose into his stomach (previously into his intestines.) Every four hours the nurses would refill his bottle, but there was never a time food was not being pumped into his stomach. A few days ago they started compressing these feeds, pumping the same amount of milk at a slightly higher rate so that every four hours he’d receive the food over the next three hours. To help prepare him for the feeding schedule he’s likely to need to be on at home, now his bottle is being changed every three hours, and the 48 ccs of milk pumps so that all the food is gone by the time two hours is up. That means that for every three hours there is one hour where he isn't being fed, and bottle to the mouth or not, he knows it. Calder, just like his momma, is a grump when he’s hungry.

Calder is also very stubborn (not like his momma!), and is also proving himself to be quite strong, standing absolute in his desire to look this way or that. When he wants to move his head, the man moves his head. There is very little hope even as a full grown adult of keeping him just so in order to keep his cannula sufficiently up in those little nostrils.

To help entertain his inquiring mind (I’m just assuming, but he’s clearly asking himself many questions as his eyes search his surroundings when he’s alert and out of his crib), we did get not only the mobile set up a week or two ago, but a swing. He seems quite amused by both. The swing took a little getting used to – when he first tried it he brady-ed for the first time in weeks (it seems, anyway), what with his chin pressed against his chest, but the nurses resolved this situation by rolling up a towel to place behind his neck to help prop his chin up. The monkeys dancing from the mobile have bows in their hair, it’s true, but Calder hasn't petitioned yet – he’s typically mesmerized.
Because the docs compressed his feeds last night and because he had an eye exam today, they did not adjust his flow, which is currently at 3 liters per minute. His eyes today were marginally better than they were last week so while both are still considered Stage 2, they’re a milder Stage 2. Again, the ophthalmologists continue to be optimistic.

Monday, October 14, 2013

Liquid Gold

Calder has never been afraid to use his tongue. In the early stages of trying to get Calder to use a pacifier, something expected to help him take to feeding later on, we could hardly keep it in his mouth given his tendency to tongue his lips constantly. And when it wasn't the precariously placed paci, it was the feeding tube actually taped to his lips that he was pushing out.

Of course, even though we moved the tube to his nose to prevent him from tonguing it out, this wily one always finds ways. In this video, he had one minute ago been seemingly motionlessly pressed up against Kraemer's chest and the next covered in milk that was spewing out from the feeding tube he'd somehow yanked from his nose. This is the aftermath; he wore himself out fighting having it replaced and is left to ponder his existence.

I worried (based on nothing any doctor or nurse had said, of course) that all this movement out suggested he wasn't picking up on the need to create movement in, to suck.

I’m still in wait-and-see mode, but at the moment, he is showing signs of both the “rooting” and “sucking” reflexes, two reflexes that promote the ability to breastfeed. We noticed Calder would go after his blankets with his mouth when they brushed up against him, making it look like he thought his swaddling blanket would make for a good breakfast! Our nurse explained that this was “rooting.” The rooting reflex prompts the baby to move his head toward your hand when you stroke his cheek or the corners of his mouth and is designed to help the baby find the nipple. To master breastfeeding eventually, though, he’ll need to root, suck, swallow and breathe, which requires a fair amount of coordination. We’ll cross that bridge when we come to it.

Despite the increases in his feeds – he is now up to 16 mLs per hour – it’s doubtful he’ll ever need all the milk I've pumped. While just weeks into his birth the lactation specialist recommended against donating, two deep freezers full later, it’s time.

When Calder was still so little and unstable, and everything seemed more uncertain that I thought possible, the uncomfortable natural reminder that I needed to pump when I was behind schedule could have me in tears wondering “what if.” What if Calder wouldn't need my milk in the future, but this reminder remained? A little dramatic it seems now, to be sure, but not then, to my emotional self. Would donating be something I’d feel obligated to do, but didn't want to, something that would augment rather than alleviate my grief? The thought felt selfish.

Instead, I feel incredibly grateful to be a in a position to be able to donate. I’d never contemplated whether I’d feed my baby another woman’s breast milk. I can understand why women profess they’d never consider it, but when the decision was put to me, it was hardly a question. While I've hardly conducted a thorough review or checked the quality of the research (and I know there is some debate), there is a pretty good case out there for breast milk, and doctors and moms alike refer to the stuff as liquid gold. From reducing the incidence of infection to improving cognitive development and more, there are thought to be many benefits to human milk over formula that make it worth giving.

A colleague recently sent around a poignant article published in O! Magazine that struck a chord with me. Providing breast milk has been one of the only things I felt I could do for Calder, at least in the early stages, and I can only imagine how it might feel to not even be able to do that for longer than a few days when you so desperately want to help.

I've decided to donate via the Human Milk Banking Association of North America, a collection of nonprofits that follows specific standards and processes when it comes to facilitating donations. They require donors to be screened first over the phone, then complete a written interview, have their doctor sign off on their health, have the baby’s doctor sign off on the baby’s health, and complete a blood test for HIV, among other things. There are only 14 banks nationwide that belong to the HMBANA, and none of these are in DC. It took some doing (a long and boring saga), but I’m now fairly well into the process of donating to the bank in Austin, from which Inova Fairfax gets most of its milk, so I expect that a lot of it will wind up back in the hospital where Calder is being cared for.

As young as he is, Calder’s system is still getting used to digesting milk, and he’s been a little bit grumpy the last couple of days working some things out. It’s not unusual for a baby to have trouble digesting lactose, which could be present in higher levels due to the amount of milk I produce, but there are a number of other foods that could be giving him trouble. It’s nearly impossible to pinpoint the culprit quickly, and the doctors have been hesitant to tell me change anything in my diet just yet. It’s also common for a baby to grow out of these reactions as he gets older.
please, the light!

snazzy in Feichtner argyle
And in the meantime, I’m hoping that the fact that Calder recently located Kraemer's nipple with his hand through his shirt and proceeded to nail it with his gums is a good sign. :)

Friday, October 11, 2013

100 days in the NICU

Last day of September
Goodness! No blog entry for over a week! Where does the time go? (I know all you practiced parents are thinking, just you wait!) I try not to tally my hours by activity since it would just be disturbing, between working and pumping. At least while I do the latter I make attempts at being productive, working and pumping simultaneously by day ... and shopping Etsy by night. I will admit that my overnight sessions have had me consumed with anxiety over which crocheted animal-hat to buy Calder for Halloween. (In case you were wondering, I did eventually pick one!) A much better choice to fret over than some of the others we've had to ponder of late.

Even as Calder improves, there is really so much to report, and I regret that we haven’t been keeping up!

If I’d written a proper update last Tuesday, I’d have reported only good news on the eyes, as one remained at Stage 2, while the other reverted to Stage 1. Such rejoicing! This Tuesday’s exam yielded fine but less exciting results, with both eyes classified as Stage 2. The ophthalmologists are optimistic though that there will be no further progression of the abnormal growth, and last week Dr. N told us that the stats at Calder's age are now in our favor. So if the docs are not worried, I’ll try not to worry. Easier said than done.

Keeping in the heat in Gram's pink hat

Extra-large yawn

In the meantime, Calder has been coming down quite steadily in his flow, down now from 7 liters per minute … to 3.5!! (To put this into perspective, if he were to come home on O, he'd be around 0.2, I believe.) They take him down about every other day, as was the original plan and hope, and monitor changes in his vitals and oxygen requirements to determine how well he’s handling the weaning. Monday’s gas was 61, a respectable number in Calder’s case, and this Thursday’s was a very impressive 51.

Calder has also decidedly outgrown his preemie clothes and is weighing in these days at SIX POUNDS. That’s six. pounds. And this is the real stuff. He is 41 cm (~16 in) long and has a head circumference of 31 cm (~12 in). He is still on the Lasix (will switch eventually to the Aldactazide and may even come home on that one) and continues to produce very healthy diapers and usually wet his outfit once a day, a great indicator that his body, with a little help, is working as it should and allowing his lungs to function better without any extra gunk to get in the way.

Amidst all the breathing hubbub – the excitement about his switching machines and now consistent decrease in flow – we somehow managed to forget about kangaroo care for a week or two. We were holding him, but not always ensuring that we had that skin-to-skin contact. In the earlier stages it was always such a big production, what with the tubes and all, that we didn't realize how much easier it is to accomplish now. We are now approaching the concept with renewed vigor and find our visits are increasingly consumed with rocking the little guy up against our chests. That is, when he’ll have us. He is both an ornery and curious little fellow, and it takes some doing to get him to kick back and relax.

As parents, we’re still learning lots of new tricks, and Kraemer in particular has been busy honing his diaper changing and swaddling skills. I must say, very impressive, very impressive indeed. Do I know how to pick a husband or what?

Wednesday, October 2, 2013

the nurses have a field day!

When we first started this ride, in this age of internet, you can believe we googled the heck out of prematurity. One user on a site dedicated to helping parents help one another handle this type of situation recommended that we take in a camera or a notebook and leave it. We opted for the camera (we figured the nurses do enough writing when charting) and are so glad we did. If you saw earlier sets of nurse photos on previous posts, I'm sure you'll agree it's been worth the amusement. The latest included below.

Story time!
Page turn, please.

Hey, ladies.
This photo shoot is over!

Tuesday, October 1, 2013


Usually we get along. But sometimes Calder likes to fight me trying to keep his head tilted toward the cannula.

He loves me.