Musings of a Marfan Mom

First Trimester Echo Appt.

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I had my end of the first trimester echo on Wednesday. I love echo days! I’m always a little nervous, especially during pregnancy, but our Marfan syndrome clinic is so great. I know that the cardiac team really cares about me as a person and not just as a paycheck.

The echo tech had a difficult time finding my abdominal aorta so one of the veterans came in. She talked all about the time our hospital hosted the National Marfan Foundation conference a few years ago. That’s the only conference I’ve missed in a few years unfortunately, but I told her what rave reviews it earned and thanked her for working so hard at the free clinic there doing echoes for everyone.

When it was time for my appointment, the clinic coordinator pulled up a chair and chatted with me about how my family is doing. I told her about Menininho’s new diagnoses and she related some similar experiences she’d had with one of her kids. How many of you go somewhere where not only the doctor, but other staff members know the names of your family members and remember things about them?

I got right down to business with my cardiologist when he came in. “I hate my medication and I think if I have to stay on it one more day I will go crazy.” I’m nothing if not blunt! For whatever reason, my OB really likes this one particular beta blocker for pregnancy and insists all Marfan women go on it. For the most part I’ve tolerated all betas just fine, so I didn’t care because I had to get off my ARB (another kind of blood pressure medication, which I was taking instead of a beta blocker for experimental purposes) anyway to get pregnant. Well, this one sucks. I’m getting all kinds of palpitations and my blood pressure has been anywhere from 80/50 (I almost passed out) to 135/80 (fine for a pregnant non-Marf, but not ok for someone with Marfan). My cardiologist explained the only reason the OB likes that particular medication is that it’s the only one that hasn’t been documented in pregnant women. He sided with me though (I knew he would!) and immediately paged the OB and let him know he was putting me back on the beta blocker I took last year. Hooray!!!

Even better was that my aorta is pretty much unchanged from where it was in February! I wasn’t expecting a change this early – I’ll be more concerned at the next appointments when the baby is larger – but I’ll take any good news. My aorta is actually at a really good size, one where I normally don’t worry about dissection, but in pregnancy the Marfan body is so unpredictable that any part of the aorta can grow rapidly. That’s a risk pregnancy or no, but much more likely during pregnancy due to the increased blood flow and increased blood pressure, not to mention carrying around the extra weight in the abdomen.

My cardiologist didn’t like the abdominal pictures from earlier in the day, so he brought in the portable echo machine to redo them himself. Then, since he was already scanning my abdomen, he asked if I wanted to see my baby. Of COURSE! So, the clinic coordinator and another doctor came in and we all had a baby viewing party. Smudge looks SO different even just a week later and immediately waved at us. My doctor tried to check the gender (external genitalia is developed by 12 weeks, which is how far along I am) and has a pretty good guess, but couldn’t be 100% sure. He said I should be able to tell for sure at my NT ultrasound next week, so cross your fingers! He’s also going to email me the pictures.

Like I said, it’s an awesome clinic.

And a note about the gender: Mark and I are going to find out this time. We didn’t with Menininho and Mark really wanted to, so I promised him that if we had another biological baby, we’d find out ahead of time. But, I’ve decided that if we are able to get a reasonable estimate of the gender next week that I will keep it secret from everyone but family (I don’t want the grammas to kill me!) until the Marfan conference in mid July. I’ll tell the teens first, and then it’ll be open game for the blog, Twitter, and Facebook. If we can’t figure it out then I’ll probably have to wait till my 20 week ultrasound at the end of July and then I’ll just tell everyone at once.

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One Comment

  1. So glad to hear about the good news. Think about you all the time. Very anxious to find out!


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