After going a week without seeing the boy I was pretty stoked to finally get to visit. I'm not fully recovered from my cold but I'm definitely past the contagious stage. I never really bought the "I'm not contagious" argument so I did a bit of research and the skinny appears to be that the amount of the virus that you're shedding goes down dramatically as you become symptomatic...but you can still give someone a cold. So as a precaution Taryn and I wore a mask in addition to our isolation gown and gloves.
Calder is definitely making progress, which is so exciting. Only having the nasal cannula makes it much easier to take him out of the crib. Typical for Calder he does not see the new head gear as a step in the right direction. If he gets a free hand he rips his tubes out...the man wants to be free. So, I swaddled him tightly...and within four seconds he broke free and ripped off his nasal cannula. I thought fine, I didn't put that much effort into it, so I swaddled him again. This time it took him six seconds. Not one to be discouraged, I thought, "OK, kid, I'm smart, I've learned from my mistakes, you will not get free this time." I started from scratch, pulled the left side nice and tight, crammed his legs into his body and tucked the next piece, and then I brought the right side across and tucked it so tight I was concerned Calder might not be able to breathe correctly. Twelve seconds later I was not feeling very smart and Calder's hands were ripping his tubes out again. I asked a nurse to save my son from himself and went back to playing parent observer.
The doctor's gone down on his flow (we're no longer doing pressure, but oxygen volume) from seven liters an hour to six and a half. Calder's CO2 has gone back up to around 70 but according to the doctor it's to be expected because when Calder exhales the machine no longer assists the exhale but instead fights it. The flow from the nasal cannula is only one way. The plan now is back to testing Calder every Monday and Thursday and then making adjustments according to his progress. Hopefully the five-pound-phenom (huge, I know) keeps up the steady progress and comes home by Halloween! One can hope.
The nurses tell us Calder is doing pretty swimmingly, but I haven't seen it with my own eyes. And that's because I'm sick. Or at least, I think I'm sick, or on my way to sick, with a throat that feels puffy and a little bit of tingling in the ears. It could just be allergies, or it could be the really awful cold Kraemer is just getting over, which seems just as plausible to me.
Ugh! But I really, really dislike not going. Not to be melodramatic here, but it's agonizing! It's tough for any mom to leave her baby for the first time. (Ashleigh, thanks for braving the separation to come to our wedding some years ago!) You could say I leave mine every day ... but not for this long! Even if only Kraemer could go I'd feel better about it, but with him in a similar situation, it's just not worth the risk. I opted not to go into work yesterday in order to avoid spreading my germs, so why would I go to the NICU? While I believe it's very important for Calder to hear our voices as much as possible, his missing out on that bonus for two days won't set him back as much as getting an infection would.
So home we stay.
But Calder has had a big week while we were away. First, his eye exam on Tuesday showed no changes. Same as last week, I'll take it. Second, on Wednesday, the day nurse convinced the doctor that Calder was fed up with his blasted bonnet and needed some freedom (all true.) So they put him on the nasal cannula. Whoa! That means his gear now looks like what you might typically envision someone on oxygen to be on. (Another reason I am SO BUMMED I am not getting to see him last night or tonight.) After the switch his Os did not go up significantly and since have dropped to just as low levels as we were seeing earlier on CPAP. He is mostly requiring somewhere mid-30s but does waver between 30 and 40.
Before I get too excited here, though, his gas this morning showed that his C02 is still higher than they're really comfortable with, up from the 66 it was on Monday to 70 this morning. Yikes. Although they'd gone to Monday/Thursday gases, they've scheduled another one for Friday morning in the hopes that today's was just a fluke, and they'll make changes as necessary based on the results tomorrow.
As I mentioned earlier, Calder is also quite taken with the world and needs some entertainment. Calder told us himself.
Whatever we bring in, stays in. (You don't want to bring that hospital goodness home with you.) Although we've secured a mobile from another mom on Capitol Hill, we haven't had a chance to bring it in yet. In the meantime, the nurses take good care that Calder doesn't get bored.
Calder is getting to be one of the big boys in the room! He is pretty alert these days, and oh-so curious, with his eyes wide and roving anytime he's really awake. A friend let us borrow her Boppy, so Calder sits up happily when propped up and takes in the the sights.
He has had a pretty low-key last several days. They are doing blood gases only every Monday and Thursday, which means that changes to his settings are likely to happen only around those times based on the results of those gases, unless the vitals that they monitor daily (breathing rate and oxygen level, in particular) change drastically.
Although for the last few days he's been dropping weight steadily thanks to the diuretic, he managed to gain weight today ... and not look puffy! The tests this morning showed that his potassium is getting a bit low again, but just barely, so for now, they're keeping the lasix coming. He is currently 2095 g, or 4 lbs 10 oz, which is down about 4-5 oz from last week, but still, this is good. His head circumference has grown in the last week from 29 to 29.5, and his length from 43.2 to 43.5. Not a whole lot, but hey, he's a 24/25-weeker! He's not too far from his peers.
On a less progressive note, his gas this morning showed that his C02 has gone up (from 59 last Thursday to 65.8 today.) Ironically, in an attempt to counteract this, they're moving him forward rather than back, trying him again on CPAP, this time on a PEEP of 7. The nurses are convinced his C02 has gone up because it's too difficult to get a good seal on SiPAP -- he's almost never actually getting the PIP of 10 and PEEP of 8 he's supposed to. Of course, we like a move to CPAP, and we're hoping this time it sticks; we'll see. His oxygen needs went up only slightly after the switch was made, a good start, but only a start. Tonight while I was there he was requiring anywhere from 34-38, whereas last night he was mostly sitting around 30. But just like last time, his respiratory rate has also spiked, an indication that he's having to work considerably harder.
Kraemer is sick, which is definitely a bummer. When you're sick, you don't get to go in. (Heck, when your nails are more than a quarter-inch long, you don't get to go in. Apparently, this rule doesn't go over very well with the grandmas with fake nails in from out of town.) For his sake as well as everyone else's, he's also avoiding the waiting room, so he gets to stay home while I go visit. Not very fun for him. (So being the good wife I am, I stopped for some pints of custard for him on the way home. Some do hot tea? I do frozen goodness.) He sent Calder his love, and Calder told him to get well soon.
It's ironic, but true. Calder has started to cry, and we love it. I wonder how long that will last.
Now that the tube has been pulled from his mouth for over a week, he is starting to regain the use of his vocal chords. His cry is still weak but he's got it, and that means we are starting to have "normal" problems, wondering as we hold him, for example, "Why is my baby crying and why can I not console him?!"
Joyfully, he has graduated, hopefully for good, to the open crib. No more isolette and comical attempts to change his diaper through miniature openings in the plastic walls! We hope this change is for good, as we love being able to really SEE him. He occasionally has some trouble regulating his body temperature, and the nurses told me we need to bring in more long-sleeve outfits to keep him warm if we don't want him wearing random hospital clothes that are very unbecoming. Keep an eye out for a fashion shoot next week.
Hating the suction until he loves it
(Kate, make sure Margaret sees the blanket she picked out!)
We've had a series of ups and downs this week, albeit the downs a little less drastic than we've seen in the past. The best news is that he remains off the vent for the time being. He had been moving extremely quickly in this arena, with the doctors wanting to challenge him to the extent that they safely could, dropping quickly from the vent, to SiPAP, to lower pressures on SiPAP and eventually even to CPAP.
However, his steps in the right direction also require him to work a little harder, and while his gases (C02, pH, etc.) remained phenomenal (for him), his respiratory rate shot through the roof, and x-rays showed his lungs looking a little further deflated. The latter is especially important to avoid. You know when you go to blow up a balloon, and there's all this resistance at first that makes it difficult for it to get started? The doctors wanted to ensure his lungs stay open as possible in order to avoid that stage of higher resistance that would take so much more effort and energy, so they decided to give him a bit of a break, and they have moved him from CPAP back to SiPAP.
As an aside, the main difference between these latter two breathing machines is that SiPAP provides two pressures, a PIP and a PEEP, whereas CPAP only provides a PEEP. PIP (peak inspiratory pressure) is a concept referred to only when a patient is mechanically ventilated and is the pressure being forced into the lungs (when breathing normally, no air is being pushed into your lungs; instead, as your lungs expand, air is being pulled in.) PEEP (positive end-expiratory pressure) is the pressure maintained in your airways when you breathe out, so it's keeping your lungs open.
His feeding tube is now going into his nose. The little bugger has such an active tongue (I can see why, given that they bundle his arms and legs six ways from Sunday; what else is he going to move??) that he was essentially licking the thing right out of his mouth. For a short time while he was on CPAP they also tried inching him toward bottle feedings -- a ways off -- by moving the tube into his stomach rather than his intestines (gastric versus transpyloric feeds), but with him back on higher pressures, he's also back to the transpyloric feeds for now.
The other great news for now is that this week's eye exam showed no further progression of the ROP. So while it hasn't regressed, it hasn't progressed either, and we'll take that. Because of the earlier rapid progression though, he'll continue to have an eye exam on a weekly basis, as opposed to the more typical two-week schedule.
He continues to gain weight, though much of it water weight, and, no exaggeration, had started accumulating chins! Each doctor seems to view the use of a diuretic and its side effects somewhat differently, but the nurses finally managed to talk one of the docs into a slow-acting diuretic, Aldactizide, rather than none at all. Turns out this was a bit too slow acting, and other practitioners who see him only periodically (and usually, as he's swaddled, only his face) even began to comment on his edema. Thus, as of yesterday, they've decided to administer the Lasix, more powerful than the Aldactizide, and his output has increased exponentially. The nurse last night told us he looked like a different baby, and she wasn't far off. We hope that this helps get the water off his lungs and breathing a little more easily.
Apparently, among his many talents, our little big guy is also a little Houdini. He consistently manages to get out of swaddles and was always surprising the nurses early on when they would position his head one way and return later to find his head turned the complete other direction. Preemie babies aren't supposed to be able to move like that! More recently, he has succeeded in moving his entire body. Our primary day nurse, Soumaya, captured his antics below.
He isn't supposed to be perpendicular to his pillow
Fortunately for him, he keeps looking so cute that his nurses and parents keep coming back.
Amazing the small steps that we consider big news: Calder's gas early this morning showed that he went down again on his C02, somewhat considerably in 24 hours, from 69 to 62. So they took him down in pressures. Wahoo! They are now doing gases (aka the heel pricking) every 24 hours, which is much preferred over the every eight, 12, etc., that he has dealt with in the past. It's also a sign that they think he's doing better. Per usual, I'm trying very hard not to get ahead of myself and start feeling as though him being off the vent is a done deal, but it's tough not to feel optimistic that this attempt may be successful, even without the Decadron. He's been without the tube for three days now, far longer than the approximately three hours he made it on the first attempt.
Nebulizer treatment
He is still getting his nebulizer treatments, medications administered as a mist through a mask, although now he's down to one -- Pulmicort -- rather than two (no more inhaled antiobiotic, Zosyn.) Even though he's still a little puffy, his edema has decreased, so for now they've also ceased his slow-acting diuretic and are giving him sodium, potassium and chlorite supplements to build up his reserves should he need another diuretic.
Even with his improvements, when I pressed the nurse last night, she told us she thought Calder would be here at least another two months: that puts him about a month past the original estimate we received. She also cautioned he'd probably come home on oxygen. Neither of these predictions were surprising revelations, so I think Kraemer and I both took it in stride. And as with anything on this ride ... who knows?
Last night was Kraemer's turn to do the holding, and both boys were very happy campers.
The white noise sound you hear in the background is the air flowing through his machine. One nurse told us wearing it supposedly feels like sticking your head outside a car window at 60 mph. Calder doesn't like it very much. Surprise! He tries to face-plant this thing off his face just as he did with the tube.
This week we had big-time help in the cooking and cleaning department, with Grandma Anderson going to town on our old apartment and whipping up delicious dinners. It was so, so nice to be able to take a nap at the end of the work day as opposed to being sous chef in the kitchen. Nothing beats home cooking!
We are also constantly heartened by how much people care. We haven't stopped hearing from family and friends, and now we even have near strangers asking for updates and sending us gifts. The antique dealer who recently sold us a dresser was also a preemie 50-some-odd years ago and asked that we please keep her updated; the family who sold us a blanket chest wondered whether there was anything they could do, and asked that we contact them should we think of anything. When I spoke with someone at sweetgreen, she sent me a gift card and an adorable onesie. We know that family and friends are lighting candles for him, saying prayers and sending positive thoughts, and I believe it's working. It's nice to know Calder has so many friends!
Every day seems to bring something new in the NICU. I started this entry on Tuesday but never quite rounded it out, and by the time I'd returned to it each day, there was something new to report.
side effects may include puffiness and swelling
For starters, we found out on Tuesday that Calder's ROP has progressed to Stage II. Not surprising, but a little disappointing nonetheless.
You could say the odds are in his favor. The doctors at Fairfax tell us that they examine hundreds of babies each year for ROP and wind up needing to operate on only 30. This article on ROP says that 90% of babies with ROP don't need treatment.
On the other hand, the nurse this morning told me she'd consulted with the medical director overnight, along with the nurse practitioner who accompanies the ophthalmologists who do the exam on their rounds, and conveyed that given how long he's been on the vent, they were none too surprised his ROP was progressing "quickly," and they were all very "hopeful" that they would not have to laser. Calder has never been afraid of long odds, so Kraemer has suggested that if he progresses onto Stage III-V and requires treatment, it might be time for us to buy the kid a lotto ticket.
Happily, come late Tuesday, Calder had also progressed on his vent settings, moving to pressures of 12 and a PEEP of 6. Our hope then was that this meant he would have an easier time transitioning to the SiPAP machine, which can only support pressures as high as 10 over 8. His oxygen requirements had been oscillating between the 50s and 60s, though, higher than we would have liked to see them; this level leaves them little room to run if he needs extra support while adjusting to the new machine. So when Wednesday arrived, the day they'd planned to extubate, we received a call from Dr. B, the same doctor who'd extubated the first time. He wanted to know what to do if, after extubation, things went south.
Kraemer and I cannot tell whether we're overreacting to the [further] use of Decadron. But we again expressed our strong desire that it be avoided, especially given his continued development of ROP and the "complicating factor" of his gram negative bacteria. Dr. B agreed with us on a plan: if he begins to struggle to the point that it's unhealthy and a change must be made, they'll reintubate to help re-expand his lungs, then administer the Decadron, then extubate again a few days later. This time the dose of Decadron would be tapered over a longer period of time, perhaps 10-14 days as opposed to 7-8.
So here we are today after extubation and Calder is doing ... O.K. His oxygen needs dropped into the low 50s overnight Wednesday night, rose again on Thursday into the low 60s and dropped again to as low as 48 last night. Just before extubation, it was so obvious how much he detested that tube!! He had become agitated and more actively worked to move the tube from his mouth, either with his hands or even sometimes with his head, a nice big face plant into his pillow. So while I'm no doctor, and there may be no relation here, it's no surprise to me that as he has calmed down a bit he's converting his Os more efficiently. However, while his pH has remained steady (knock on wood), his C02 levels have slowly but steadily also crept up. Yesterday evening he was up to 70 from 66; at his 5 am gas this morning he'd dropped only one point, to 69.
But we're not having the extubation conversation just yet. Apparently, the doctors are willing to let high levels of C02 slide until they reach the ridiculous (in the 90s). Even so, we're hoping that at 5 pm on the East Coast you can toast to a C02 in the 50s or low 60s.
checking one another out
Now, the added bonus for us is that while he is extubated, holding him is actually a possibility. I try not to get greedy, only holding him not just when it's an option but when they think it will actually help him (and they usually think that), so as soon as it was offered last night, I pounced. While he's been my baby from Day One, he's now not quite so weightless, and last night he felt like such a real little person in my arms. He loves being held; he high-sats and drops in oxygen needs as long as you've got him situated right. If I hadn't been about to pass out from exhaustion, I would have stayed in that hospital chair with him all night.
If the YouTube video isn't too grainy, you might be able to catch his smile toward the end. :)
You could say there's been both a lot and a little going on with Calder lately. He's pulled out his feeding tube at least three times in the last week and his ET tube once, too, so he's had to be reintubated. He recently tested positive for gram negative rods (bacterial infection), and they're still waiting to figure out exactly which strain so that they can treat it effectively. In the meantime they have him on what is essentially penicillin. For the last week or so he's been low on potassium, with a level ranging from about 2.5 to 3, when normal levels are at 3.5 to 5. His depletion is probably a result of multiple doses of a diuretic and can lead to GI issues and other undesirable symptoms. Potassium replacement isn't always so desirable itself, so it's something they've been watching carefully but not actively addressing. Calder was being fed my breast milk and donor breast milk in turn, both fortified with extra calories via a special formula, but as of a couple days ago, they stopped using the donor milk entirely and have switched the additive formula to one with fewer calories but more potassium. He's gained a ridiculous amount of weight, putting him at 1860 g (just over 4 lbs), but much of that is water weight. In the past they'd give him a dose of lasix to help him release some of that (which helps get the liquid out of his lungs, too), but because of the low potassium, they've been holding off on the lasix and are only still considering a diuretic that works more gradually.
Whew! But ultimately, all this feels like small potatoes compared to anything related to his breathing or eyesight, and in these areas, we're still more or less in wait-and-see mode. Calder has been making big-time progress on ventilator weaning, still at his lower PEEP of 7 (rather than 8) and dropping in pressures from 17 to 13. Way to go, buddy! But his oxygen requirement had been creeping up and up, and last night was as high as 68%, which only increases my concern for his eyeballs. But as of this morning he was requiring 50% -- not as good as we've seen him but obviously a huge improvement from 68! Maybe the antibiotic is doing its thing. Fingers crossed that trend continues and that on Tuesday his eye exams bring positive news, too.
The plan is to try to extubate him again on Wednesday. Dun dun duhhhhn. They are hoping that because they've already brought his settings down lower than the last time, and because he's older and bigger, that this time will be more successful.
In other news, because we want Calder to have a room other than a closet, we decided to move down the street (read: this is why you haven't heard from us for a while!) When we planned this move for September 1, we thought we were being fairly generous on timing, with seven weeks to go until Calder's original due date. Assuming I'd be as big as a truck and thus not interested in loading one, Kraemer had agreed that we'd hire help, he'd manage the process and it'd be easy as pie.
We all know things don't always go as planned. Realizing there was no way we could complete a move in a weekend, and with both sets of grandparents raring to help (yay!)*, we scheduled our leases to overlap by two weeks and have spent the better part of the last seven days making trips between the two places. Now our new home looks like a disaster area and every time we go to cook or even dress ourselves for work we're faced with the reality that the pot we need or every other article of clothing we'd like to wear is probably at the old apartment. It's fun. We're starting to get to know the folks at all our local take-out places pretty well.
We left a camera for the nurses a couple weeks ago and just recently remembered to check the photos. The result was, among other shots, the series below of Calder sans all his gear (with the exception of the feeding tube), surely following one of his self-extubation stunts. Calder will probably groan someday when he sees #3, but it cannot be helped. I love it.
*Heather and Brian, Mary Ellen and Tommy, thanks for your numerous offers to help too! If we were with it enough right now to coordinate any kind of plan, we definitely would have loved to have you join us in this fiasco we call a move.
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