Montage of a Marfan Mom

Pregnancy: 24 Weeks

Thursday will mark my 24th week of pregnancy.

I am definitely showing at this point. I don’t think my weight gain is much different than my first pregnancy (& no, I don’t keep track of the pounds) although I feel like my belly is bigger. I’m pretty sure this is a by-product of having Marfan syndrome: because of Marfan, my ribs basically touch my hips and in fact overlap on one side. This baby has nowhere to go but straight out, and he is consistently measuring bigger than Menininho was (although who knows, with how inaccurate ultrasounds are!).

One thing that is similar to when I was pregnant with the Menininho is my sleep habits. I am having a hard time going to sleep before 2 am. When I was pregnant with M, Mark had to move to California early on and I was in grad school, so staying up that late was not an issue. I’d fall asleep on the couch watching Carson Daly and wake up at 10 am. That was the life! ;-)

These days I have to get up earlier to take care of a very busy 18 month old, though as of late he’s had mercy on me and “read” Dr. Seuss to himself till 9:30 on those days we have time to sleep in. Then, when I go in to check on him, he looks up, smiles, clicks his tongue, and goes back to reading. I. Love. It. My poor, patient husband does NOT appreciate my nocturnal habits.

One thing that’s totally different this pregnancy? The back pain! Holy cow! At 15 weeks I picked up the Menininho to put him in his crib, pulled something in my back, and it hasn’t been the same since. Bending over to get him out of the stroller today I heard something crack and shift that I’m fairly positive was not supposed to crack and shift and I can hardly walk. Advice? I’m looking at getting one of those maternity support belts to see if that makes a difference when I’m up and about. I don’t know what else to do. I can tell I’m having the problems from picking up M, but I’m at a loss for how to get around that. He’s not even 3 lbs over my 20 lb weight limit, but even 20 lbs would be hard these days, getting him up onto the changing table, into/out of the crib, and into the car. Maybe a giant step stool in the nursery would help???

I have only been to labor and delivery once thus far, for contractions (lucky it’s all good!). They do not make the unit easy to find (you have to go through a kazillion winding hallways) so when it’s the real deal I am totally opting for the wheelchair pushed by a knowledgeable security officer.

Smudge is a SUPER active baby. I love it! The other night he kicked Mark in the face when he was talking to my belly. I actually don’t feel him as much as he moves, due to the anterior placenta, but it’s so fun watching him squirm on the ultrasound machine (I have to get one every month). Each tech has commented on how he doesn’t sit still. I was able to see my stomach moving around like pop corn popping at 21 weeks: way earlier than I did with Menininho. This makes all the back pain and insomnia worth it (well, and getting him at the end of course!).

Tomorrow I meet with the anesthesiology team to start discussing the ins and outs of my VBAC. I know I need the epidural but I’m going to see how long I can put it off. My hope is that they’ll agree to use my blood pressure as an indicator of when to put it in, instead of just doing it on admission to the hospital, but of course I’m sure that will depend on what my cardiologist says.

Speaking of him, I have my end of 2nd trimester echo in 2 weeks. Hopefully my aorta is stable and all my meds can stay the same.

And on that note, it’s almost 1 am and Smudge desperately wants a grilled cheese sandwich, which his dad is so kindly making. YUM!

August 17, 2010   6 Comments

For the Love of the Needles

I have a new love.

holachospital.com


No, it’s not masochism.

It’s acupuncture!

I’ve talked before of my chronic pain. It had gotten to the point where I couldn’t really cook dinner anymore because 10 minutes of standing made me want to cry, due to my scoliosis and dural ectasia. Whenever I menstruated (sorry for those of you who are afraid of that word!), my fibromyalgia would flair for days. During these times I would just have to sit on the couch and have nothing touch me, sometimes for hours.

Not exactly conducive to parenting a toddler, you know?

So, in October, I made an appointment for a pain clinic. It took several months after that, but I was able to start a twice-weekly physical therapy regimen and that, combined with The Situation, took the edge off.

Then, a couple weeks ago, I started acupuncture. I am a new woman. I know that sounds dramatic, but it IS!

I hate needles. Hate them. But, I’ve always just known that acupuncture would work and talked myself into being ok with needles for this one purpose. After the initial consultation with the doctor/acupuncturist, she agreed with me. She told me to expect results in about six sessions. Each session is 30 minutes long. I lay on my left side; she places needles in various places depending on where I’m having pain (usually one in the head, two in the ear, a few on my neck, back, elbows, ankles, and top of my feet).

After ONE session, I was fibromyalgia flair up FREE for my menstrual cycle. I do not remember the last time that happened. It’s been years.

I’m not without my sore days, my stiff days, but the relentless pain is gone. I can cook. I can take my son to the park and walk around there for an hour. Some days, we go on MULTIPLE WALKS. How now, brown cow?!

You know what we’re doing today? Going to the hospital to meet two teens for a few hours. Then we’re going to go home, maybe Menininho will take a quick nap, and go on a walk with our friends, play at the park for a bit. And tomorrow? A walk at the mall with our playgroup, another walk to the park in the afternoon. I could go on.

Point is, I can DO these things. Because of the needles.

http://i.telegraph.co.uk

March 23, 2010   10 Comments

New Back Brace

It took 3 years, but I finally convinced my orthopedist to order me a custom back brace. I have a rare type of scoliosis, very flexible with a teenage onset and that continues to progress even as an adult. My specialist at Hopkins suggested bracing me 3 years ago to see if that had an affect on the progression, but my local docs always insisted on an off-the-shelf, one-size-fits-all corset brace. News flash: Men don’t have hips, but some women do and a brace that doesn’t flair at the hips isn’t going to fit such a woman. (You’d be surprised at how often [male] doctors tried to convince me that male and female bodies are actually the same.) Since these braces invariably slid off my hips and up my chest every day, I quit wearing them and my scoliosis kept progressing.

Anyway, my local, politically incorrect ortho wrote me a Rx last month for my very own custom, plastic back brace. Have you ever had one made? It involves wearing a skin tight, t-shirt material halter dress, which might be sexy if 1) it wasn’t totally see-through and 2) I had my pre-baby body of 5 years ago. So now that I’m feeling a smidgen awkward, two people come in and start wrapping me in strips of fiberglass, like I’m a giant 5th grade papier-mâché project. They were really nice about it though (mostly just glad I wasn’t a squirmy 5 year old or unconscious, the latter of which apparently happens from time to time since they wrap you really tightly).

This is me without my brace (curve: 40 degrees):

This is me once I’m braced.

It goes over the tank top and under my shirt.

Added benefit of the brace? “You won’t be able to eat those extra French-fries without loosening it up,” my doctor told me. He’s a winner, that one.

Now, I have a habit of naming things, and I think this brace needs a name. It also needs to be a masculine name because, as my friend Danielle put it, “He’ll be squeezing you tight and with you more than a stalker! He’s always got your back, and, just like a man, he is helping you feel good in the long run, but sometimes gets in the way and doesn’t look flattering with your sexy, slinky dress.

Wonderful readers, I need your help choosing a name! So far all I can think of is Hugh (yum!) or The Situation (tell me you get the joke!). Please leave your suggestion for a name (or vote for one of those two) in the comments and I’ll choose a name in the next few days. I don’t really have any fancy prizes to offer, but if I choose your suggestion, I’ll link up to your blog if you’ve got one!

Below you’ll find some pictures of said super-sexy brace. He felt the need to show you just how awesome having a brace can be.



February 3, 2010   15 Comments