Thursday, March 5, 2015

snow day!

eeenteriesting...
but it's still snowing, we better take shelter.
Today was a snow day for the government and pretty much everyone in DC/MD/VA. At lunch time Kraemer took Calder to the neighborhood hardware store in our hiking pack, bundled up and sheltered by an umbrella. They were predicting between 4-8 inches, which we easily accomplished. I heard we got 9. Calder enjoys getting out of the house any way he can, but his face was still icy by the time they returned from their mission. We are all simply itching for spring.

Calder had yesterday what I am hoping is his last Synagis shot. Synagis does not prevent infection but has the potential to make RSV infections less severe in high-risk infants. As I’ve said before, the cost is astronomical, and insurance is picky about who they authorize to receive it, but Calder qualifies. I’m grateful for it (and more so for the fact that we haven’t had to deal with RSV yet, knock on wood), yet taking him to these appointments is excruciating. He is smart enough to know what’s coming and claws your shoulders, hanging on for dear life so that you cannot put him on the scale (dosage is according to weight.) Poor sweet thing. Then I have to hold him and his hands down while two nurses each inject a vial into each thigh simultaneously. Excruciating. Last year the season was a long one so he still got a shot in April – I’m hoping we get to call it quits this month instead.



in fact, let's get outta here.



guys, i'm serious!!! (we left)
Calder learned to sign “please” a couple months ago and now thinks that works for everything. “What would you like, Calder?” “Please!” He understands nearly everything I say to him, even before I expect him to understand it. Last week I was saying, more out of habit than anything else, as I do always try to narrate my actions for him, “Now we have to get your bib,” and instead of standing while I retrieved it, he scurried off to open the drawer, pull out a bib and hand it over to me. Our nanny speaks to him absolutely nonstop, nearly all of it in Spanish, so his providers have been surprised at his Spanish comprehension as well. He’s going to be bilingual and I’ll have no clue what he’s saying once he starts spouting words. His current project is learning how to clip himself into and out of his booster seat at the table; I’m happy to teach him how to snap in but not so much how to snap out. His mind works a mile a minute, and Kraemer and I enjoy just watching him go; he’s our entertainment. Sometimes I feel like a kid at the zoo watching a monkey.

sporting Mom's sweater,
handknit by great-Gram, circa early 1980s!
embracing his feminine side.

Re: my pregnancy, just like that, everything seemed fine and dandy again! At my next appointment, Dr M seemed far less concerned – perhaps it was because my cervical length was 3.7, which is just fine compared to when you really start to worry, knock on wood. (Since then, I had another measurement the next week of 4.19, even better.) He did not seem at all phased to learn we were going to pass on the surgery. That said, he maintained that I needed to telework, although concluded that if I wanted to negotiate with my supervisor to go once a week, that should be fine. The idea is to stay off my feet as much as possible and keep gravity from working against me. Overall, he told me that in terms of restricted movement, I needed to just take it easy and, when I asked about specific activities (like picking up Calder) use my best judgment. Interestingly, he told me his goal was to get me to 30 weeks, which caught me off guard as, hey, dude. My goal is 40!



already breaking the [piggy]  bank

Wednesday, February 18, 2015

A Whole New Ballgame

Because I know that some folks come to my blog who are moms or dads of preemies, I thought it might make some sense to chronicle a little bit of my experience as a preemie mom blessed with a subsequent pregnancy. Note that this particular entry will be all about being preggers, and the only Calder-reference will be photos, so if you are here for the latter, you might do best to skim. J

We love bath time!
Yes, I am *almost* always this happy.
This week I switched to a practice with a doctor who specializes in high risk (an MFM, they say, Maternal Fetal Medicine physician). I felt it essential. Plus, when it became apparent I’d be coming in at a minimum of every two weeks to have my cervical length measured, a practice and hospital (should there be bed rest… or a NICU in our future) in Fairfax looked increasingly unrealistic. Long story short, it took me some time to identify someone and get in to see him, so my first visit with Dr. M was yesterday, at a bit over 17 weeks. Part of me feels very reassured and gratified that I made this switch while the other part of me is, let’s say, totally bugging out.


A little art with breakfast, thank you very much.
Those who’d talked to me about Dr. M had told me he too is laid back and “won’t make you unnecessarily nervous about your pregnancy.” Well then. I suppose it is a fundamental difference between how a high-risk specialist and an OB with other specialties approach pregnancy (another NICU mom today verified my experience in this department, telling me to “buckle up”), because his strong recommendations were certainly more conservative than I was prepared to hear. For starters, and the biggie we’re dealing with now, is cervical cerclage. If you don’t know what cerclage is, be glad. In short, you get your cervix stitched up. Super! You can get a preventative cerclage, which is essentially what Dr M is recommending for me; however, those are typically done between 12-14 weeks, and I’m closing in on 18, which is more typically when you would call it an emergent (emergency) cerclage. 
I brush my own hair...
flush toilets...
And bang on things.
I’ll spare you the details, except in the case that you are interested (this article really spells it out nicely, and there are a host of studies, none of which I know more about than their abstracts, which is a total bummer). Long story short, the procedure is riskier now than it would have been at 12 weeks (mainly of infection or causing your water to break early, either of which can cause the worst of the worst), and we have a very big decision ahead of us. Of course, there are benefits to cerclage or we wouldn’t even be discussing it, mainly that studies show it can extend your gestation period by nearly 14 weeks. Pretty magnificent! I am getting my cervix measured tomorrow morning and am scheduled to talk with the doctor around noon, and we’ll have to make our decision by the end of the day.

Found the dry spot.

I LOVE to be outside!
The rest of his advice isn’t nearly as grim but surprising just the same, given where I’d left it with the last practice. Of course, this man sees only high-risk pregnancies and has a very clear picture of where they can lead. All travel more than 30 minutes from the hospital is out. Exercise is out starting yesterday. Slightly more surprising is general restricted movement; Dr M doesn’t even want me going to work anymore. At all. I cringe whenever I think about it (I’m already feeling cooped up since we keep Calder isolated and I knew I wouldn’t be traveling until after the pregnancy), but you can believe I’m 110% willing to help stave off the alternative!

love!
Right before I went into my appointment I ran into a mom I’d met through a preemie listserv who just happens to work at the State Department with me, a mom who knows exactly what I’ve been through, plus some, I’d say, and when I told her I was pregnant, followed by, “I’m a little nervous,” I could see it immediately in her eyes: she got it. She said to me, “Of course you are.” And I was grateful. Of course I do not want to be stressed out, I know that’s the best route, but it’s also much easier said than done.

Monday, February 9, 2015

Double the Trouble

We’ve got a bun in the oven! We are about 16 weeks in and due at the end of July. The decision was both an easy and hard one. Yes, I am considered high-risk given my history; having had one preemie increases the chances I could have another. And yes, as many of you know, having a child in the NICU is … hard. And not something you ever want to do again. But having a child period is a great joy, and when you have a child like Calder, how could you resist wanting a number two? :) I make light, but let's just say we gave the decision a lot of thought.  

I am getting ready to switch practices in about the next week, where I will begin seeing a group of docs at GWU that specialize in high-risk pregnancies. This also means I will deliver at GWU, which has only a Level III NICU as opposed to the Level IV we had at Fairfax; I didn’t want to leave the wonderful care I knew we’d find at Fairfax but a) even though I have weighed the NICU into my decision greatly, I am very optimistic we won’t need it, and b) I’ll be seeing the doctor possibly weekly and at the least, every two weeks, and there is a possibility I’ll need to be on bed rest, so Fairfax, which is not close, was looking increasingly unrealistic. If the baby were to need a higher level NICU, as Calder did, my understanding is that s/he would be airlifted to Children’s, a Level IV, which, having been frequently for Calder’s specialists and having heard many good things about the care at that NICU, too, we’re comfortable with. So, assuming I like these docs, I have found an option in the District. I’ll be receiving a weekly dose of Makena, which is relatively new on the market (I think approved by the FDA in 2011) but has been found to decrease your chances of preterm delivery, at least by a little, so at the moment, the decision is, yes, we’ll take it. I am very hopeful though that the shots will not leave me sore in the hip/leg for three days, as I hear they do, or any of the other lovely side effects hormones tend to cause when injected into your body but yes, I do realize that all sounds like drivel compared to what it could help prevent.


Calder is really doing wonderfully. After all that sickness in the fall, we have really managed to ward it off very successfully this winter. (Knock on wood.) In no small part, of course, because we’re keeping him isolated. After that MONTH of sickness, maybe longer, I decided that regardless of what the doctor told me (“He’s a normal kid now.”), I personally could not handle him being sick again. The one night had scared me half out of my mind, not to mention that none of us were sleeping, and that gets old fast. Low and behold, when we went in to see the doctor in early January for his 18-month appointment, this time a (different) doctor said, “I am SO glad you are keeping him isolated. This flu season has been very bad, for both the flu and RSV, so I would recommend that you continue to keep him isolated.” Can I call that a mother’s intuition, or just selfishness?

We did take him to Cincinnati for Christmas, despite the big flu scare. I'd been monitoring the news and CDC flu map for weeks, and had friends warning me of its severity, so once we arrived at my parents' house, well, we stayed put. But that didn't mean Calder had any less fun. In fact, usually relegated to our row house in DC, Calder was probably in heaven in his new environment.

No one's glasses are safe!
Last one of these, right, guys?
He also had his annual evaluation with Strong Start, DC’s version of Early Intervention, and he demonstrated a delay in two areas, which means he will continue to receive services. Fortunately, neither delay was deemed significant, and I’m not worried. His speech therapy has been increased to once per week, we added occupational therapy weekly and his physical therapy has dropped to just once a month. We’re mostly working on his eating, things like feeding himself and being open to different textures, and communicating, as he still has no words, though he certainly makes plenty of sounds. ALL of his therapists tell me at every visit how his development will absolutely skyrocket as soon as he can be around other children, which I get, but we are going to keep that big booster on hold for just a few more months. His physical therapy has pretty much been dropped because he is a walking fool! He has been walking since about mid-December, I would say, and can’t seem to get enough. He is even a fan of his shoes. We do what we can to keep up. :)


Running the Capitol

Friday, November 21, 2014

Fall Photomontage

It's hard to believe that a year ago last Friday, Calder was coming home. He has made such major strides since then, and we know we could not be more blessed to be where we are today. 


And I definitely need to sear this mommy stage into my memory. I am well aware that moms go unappreciated sometimes since I'm pretty sure I was guilty of it myself back in the day. I know that teens can go through their stages and I intend to get myself through it by remembering Calder clinging to me, crying when I'm not the one to put him to bed, never leaving me alone in a room long if he knows I'm in the house and giving me big, big hugs.







Sunday, November 16, 2014

A Tubie No More

pondering life
Oy, time flies. I’ve been saying for weeks that I was at least going to write an entry commemorating his G-tube removal but look – even that now is almost two months past! Yes, it’s true, Calder is now G-tube-free. The event was thankfully uneventful. Shortly after my last entry in August, Calder’s site became quite angry looking, and then the first week of September he contracted a bit of a small cold, so I was a little uncertain what the word would be when we finally got in for our one-month weight check. Since I took him in for a sick visit we wound up just using that weight, which was 18 lbs 12 oz on September 12; Ginny said that was just a little bit shy of what was ideal, but she gave us the green light to take it out. She told us some families preferred to leave it in through cold and flu season in case when (not if, you see) the child got sick and possibly lost his appetite, he could still receive nourishment through the tube. Her opinion was clear. Based on all her past interactions with Kraemer, she said she imagined we would not be one of those families, and she noted that if necessary, we could always put it back in. Not that that was a real reassurance for me – I never want to have to put it back in, not because he gets sick, not because he suddenly develops a stronger oral aversion, not for any reason ever!! Still, because he was getting over a cold we did decided to wait a few days to remove it, mostly because should there be any issues with the site healing, I certainly didn’t want him to have an infection and a cold at the same time. No thanks.
sun-protected. we picked the hottest pumpkin-picking day
ever.


Kraemer removed the tube on Monday night, September 22. I was in Belgium for work, so I missed the momentous occasion, but I got to come home to a textbook result (some leak, some get infected, some require surgery, usually when they've been in a longer period of time.) The site healed overnight, mostly, he told me, with no leakage. This scar will definitely be more noticeable than the scar from his heart surgery, but a badge of honor, nonetheless.



rough-housing at the botanical gardens
After my return home, we spent the last week of September interviewing nannies, with the hope that we’d have one picked out and hired by the time we left for Italy on October 3. No dice. Long story short, our dear, wonderful parents took turns watching Calder while we were in Italy, and then Kraemer took over once we’d returned. We took back up with the interviews, and after a couple of hiccups, finally landed a very sweet, competent woman to keep Calder company. I’d put off and put off the interviews in the first place, I think because subconsciously I was really struggling with leaving someone else to raise my child during the day. Perhaps we’ll return to that discussion sometime in the future, but for now, we are so happy to have found Virginia.



Little sicky (ok, this was when he was
sick over the summer, but you feel his
pain, right?!)
To our chagrin, we returned from Italy and from a fabulous Ohio wedding (Jennifer Hunter!!), to a snotty Calder. This time, his being sick was a doozy and really took its toll on all of us. He was sick for over two weeks and even now sometimes has a cough. We went back to nebulizing him multiple times daily with both albuterol and budesonide, and we will now be nebulizing him with the latter throughout the remainder of the season. For several nights I was tortured by his rapid breathing and torn about whether to take him in overnight; even when I know exactly what signs of respiratory distress to look for, rapid breathing is never a comfort. Furthermore, Calder wasn’t eating, he wasn’t sleeping, and neither were we (Kraemer wound up getting really sick, and me sorta sick.) A colleague informed me later that sleeplessness is a side effect of the albuterol, lucky us. I cannot even fathom doing this again this winter. Because of his being sick over the summer and sick to such a degree in early fall, we will be keeping him quarantined to a higher degree than we anticipated. Also, both fortunately and unfortunately (fortunately because I want him to be protected and unfortunately because I wish he did not still qualify as so vulnerable), he qualified for a second year for Synagis, the vaccine for RSV. I heard that it was quite tough to qualify this year (and you may remember from my entries last year that the vaccine is by dosed by weight and obscenely expensive), so we are happy that Calder has this extra oomph of protection.


Once Calder was mostly back in good health, we had a consult with an occupational therapist, who has recommended OT for Calder once a week, as well as an increase in speech therapy, as well as a feeding consult. In general, Calder does a pretty decent job of feeding himself finger foods but could stand to improve his pincer grasp; he is oftentimes mushing food in the vicinity of his mouth rather than placing it directly in, although he gets the job done. The feeding consult was recommended on account of his loss of appetite, or perhaps an increase in his oral aversion, but ultimately, I think the setback mostly came as a result of his sickness. Now about a week or so later, he is eating much better, though still not as consistently or with as much excitement as before. Perhaps the novelty has worn off. If the feeding consult comes to fruition, we’ll find out.  But he is making great strides in physical therapy, taking to his walker with renewed vigor. Cristiane thinks he’ll be walking within 1.5-2 months.


On that note, Kraemer and I both witnessed Calder take at least eight steps today, unassisted. What fun it is to see. Look out, world!

Saturday, August 16, 2014

Tubin'


first attempt on rocking horse. not so sure.
This week our main event was seeing Ginny, our GI nurse practitioner. Kraemer has been taking him to his last few doctor appointments, catching up to the number of trips to the docs I accrued while I was on leave. By now, my turn has swung back around.

However, going this time meant I got the privilege of hearing what Kraemer has been hearing for weeks now, that Calder is the wonder child. It’s really important for me to step back and comprehend the magnitude of the change, the huge strides Calder has made in such a short amount of time. It’s okay for the doctors to say it, but somehow it’s not okay for me because it still feels too early to fully believe that he escaped prematurity with so few major issues. Long term? We’ll have to see about that. He could still have some developmental issues. He still isn’t the world’s best eater, we’re just a little slow to come around. But these are nitpicky small things. Big picture, this boy is AMAZING. He is ROCKING IT. Ginny worked in the NICU for five years many, many years ago, and although she’s far removed at this point, she still sees in her line of work many of the children that leave it. She tells her colleagues (who also left the NICU long ago) that they would just not believe the progress she has seen. She said they used to kiss the 23 and 24 weekers before they rolled them out of the room, knowing they wouldn’t return. So for her to see Calder here, so alert, so healthy, so alive, that’s a bigger deal than sometimes even I can fathom.

on-sock wonder,
saying hello to the Justices
Oh, annnnd she said he looked like Kraemer. I expressed surprise (because very few people say that, but perhaps only to me, maybe they say it more to Kraemer). I think she took my surprise as offense, so she hurriedly pointed out that that was a good thing, that Kraemer was a good looking man. I laughed. Obviously, I said, I think so too.

Calder still has the tube. He’s 18.5 lbs, which, as I’ve said before, even though Kraemer and I felt like he’d really stagnated, she said is fantastic. He’s still way on the low end of the scale, but he’s caught up in height and therefore is pretty much right smack dab where he’s supposed to be in terms of weight to height ratio. She told us to quit fortifying the breastmilk we are giving him, which we’d been doing to 24 calories (breastmilk averages about 20 calories per ounce), and see how his growth progresses without that additional push. We are to come in in one month for a weight check, and if he’s still on track, out comes the tube. Interestingly, as long as the stoma still looks as good as it does now (no granulation tissue, no leaking, no infection, a pretty pink color) we’ll just take it out ourselves (two hours after the last meal before bed) and slap a Band-Aid on. We will need to send her a photo right before we do it just so she can double-check that everything is copacetic. She suggested we do it on a Monday so that we have all week to call in if we have issues. If all goes well, it’ll be mostly closed by morning; if not, we’ll need to keep a close eye on it for leakage, and perhaps take him in for surgery.

In other news, we’re moving this weekend. Not far, really - about 10 blocks, and from G St to E St. Even so, as we get all packed up our small rowhouse has become a maze of cardboard boxes. Disaster zone.
Boxes EVERYWHERE!!

Sunday, July 27, 2014

An Apple a Day ...

Why settle for one Wubbanub
when you could have two? At once?
Best cube ever!

The persons who gifted Calder this bib
shall remain anonymous. :)
About a week after our return from Cincinnati, we took Calder for his one-year check-up with the pediatrician. Kraemer took him, which means I don’t know his exact weight, but I think it was 17 lbs 15 oz, or something in that vicinity. We told her we were concerned about his meeting the mark (sometimes I wonder whether he’s shrinking), and she told Kraemer we were crazy! That Calder was bigger than her kids were at this age. Again, something like that, and keeping in mind that she had a 28-week preemie, so who knows what the baseline was for that comment. I’m pretty sure he wasn’t on the charts this time. Regardless, she said not to worry, that he was doing great. Another nurse who had been here the first time we brought him in -- the day after his discharge – was astonished at his progress. What mom doesn’t want to hear that? So, hey, I’m happy.


Otherwise, not much news. Calder came home, opened all his birthday presents (with only a little help), and played with all his toys. Normal kid stuff. In some ways, we’ve really left the whole preemie thing behind us. He still sees physical therapy once a week, every week, and speech therapy every other week, but other than that, we now see doctors maybe a couple times a month as opposed to three times a week.