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!

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