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Monday, September 21, 2009


Okay, this isn't a crafty post. It's exactly the kind of post I wasn't going to do - it's all about me. And it's personal. So if "Mel's health and wellness" isn't a topic you're looking to brush up on, please feel free to skip this one. I promise craftiness next time.

So, two years ago when I was pregnant I had these weird symptoms (severe itching with no rash) and P was born early with weird symptoms (premature birth, fetal distress, meconium, jaundice). At the time my doctors couldn't figure out what was wrong, and by the time P was born, the focus was on getting her healthy and out of the NICU.

I mentioned the itching to my new doctor at my last appointment (my old OBGYN moved, so this guy wasn't around for all the drama of the last pregnancy), and he started asking questions and ended up saying that it was probably a liver condition called cholestasis. So I got home and googled the heck out of it, and that's absolutely what had happened to me! It's apparently a really rare thing (less than 0.5% chance of getting it) that I don't have any of the risk factors for. (Sorry to end that sentence with a preposition - I couldn't bring myself to type, "for which I had none of the risk factors." I wish there was a way to not end sentences with prepositions that didn't sound stilted. But I digress. . .)

The good news is that I feel a little bit better about my ability to tolerate uncomfortable situations. At the time all this itching was going on, people kept telling me that pregnancy made you itchy and uncomfortable; it's just something you put up with. (Again with the prepositions!) Since this disease doesn't have a rash to go along with the itching, it's easy to get overlooked because a little itching is normal. When you have cholestasis, however, the itching is intolerable. (I can say that - medical officials use that word, so I'm not being dramatic.) I seriously felt like I wanted to rip my skin off, and I didn't sleep for weeks because it would not let up. (See? TMI - I warned you!) So it's good to know that I'm not just a complete sissy who couldn't deal with normal pregnancy discomfort. It's also pretty good timing to be finding out about this. If we had known with P, maybe we would have been able to do something, but since that didn't happen, it's kind of good to not have had this to worry about for the past two years. It usually doesn't kick in until the third trimester, when pregnancy hormones are really goin', so I wasn't really at risk before this. So now that we know, we can prepare and be ready, but not get stressed about it before it's a real concern. And I feel really confident about my new doctor - Mark Pickhardt at Mercy. I've only had a handful of appointments with him, but he seems so competent and he listens and doesn't interrupt, and now, being able to suggest that it was this liver thing that had happened. . . most of the personal experience stories I've read about about women with cholestasis involve the patient stumbling on information on the internet and having to convince their doctors, who have never heard of it, that it's serious and it's what they have. So I'm blessed to have a doctor who's apparently very knowledgeable.

The bad news is that there's a 60 - 90% rate of recurrence, which means we're gearing up for probably having to deal with it with this pregnancy, too. Also, the risk of stillbirth is so great that early delivery (by 36 weeks) is the standard. There are a ton of tests and monitoring procedures that have to be repeated weekly or twice weekly after you're diagnosed, and the goal of treatment is to control it a little bit - there's no easy fix. So P was born at 36 weeks, at which point most babies' lungs are developed, but hers weren't quite ready. And boys develop slower than girls (a fact painfully clear through life, not just in utero), so the concern is having to deliver the baby before he's developed enough. Which is sickening - we spent two weeks with P in the NICU, and it was absolutely the worst experience of my life. To know that we might be in for that again. . . not encouraging.

The funny part is that I've been researching and talking about this so much lately that it's really gotten in my head. You know how if you're thinking about spiders and bugs and creepy-crawlies you start to feel like they're crawling on you? I keep obsessing about itching, and feeling like I itch. Because at this point we're kind of waiting for it to happen. Not in a fatalistic way, just to know that we need to jump to action if it does.

Here are some of the sites where I found the most (and most helpful) information about cholestasis:

Again, my apologies for the lack of craftiness. I'll get back to it soon. I'm looking for a way to scan in scrapbook pages so I can post and brag about those. The problem is that our scanner can't do 12x12 pages; neither can D's at work. . . Any ideas?


  1. WOW--that's unreal! I'm so glad you found out what to be looking for and can take steps to safeguard baby boy. I HOPE you don't have to deal with another baby in a NICU stay--will be praying you don't!

  2. Good grief! I've been reading about all those weird pregnancy illnesses in my book and they will freak you out. I'm glad your doctor is so good and didn't just brush it off as nothing. Another NICU baby is so scary- I don't think I could deal with it again either. But, Andrew came at 32 weeks with premature lungs and only had to stay two weeks, and as my hope that you and Drew have a boy just like Andrew (ha!), maybe he'll do even better! They have a great shot that they give you if the baby is going to be born premature that makes their lungs develop rapidly and it worked for Andrew, because he wasn't even on a ventilator for 24 hours. I don't remember if they gave that to you for Penny or not. We will be praying for you and baby boy!

    On another note, Andrew was watching his bday video and Penny was on it and he pointed to her and said "Penny" actually it's more like "Peee", but he knows her and loves her! It's too sweet!