8.08.2013

Frustration and the "Practice" of Medicine

Earlier this week, I had another visit with my high-risk ob for a growth ultrasound of Jellybean to make sure he's growing enough, but not too much.  Having conceived through IVF, I get monthly growth ultrasounds to make sure Jellybean is big enough because IVF babies are statistically smaller. At the same time, because I have gestational diabetes, I get monthly growth ultrasounds to make sure Jellybean isn't getting too big from the excess blood sugar.  Now, with his CHD, the growth ultrasounds also check to make sure he's growing appropriately in utero and not being hampered by his condition.  So far, so good.  He came in at an estimated 2 lbs 8 oz.  His belly measurement was his biggest measurement, but it was within 2 weeks of his gestational age, which is within normal limits.  During the ultrasound, we could see him open and close his mouth, open his eyes, and practice breathing.  He was relaxing and not moving too much.  He actually gave them a great view of the heart--a view we can only hope he'll give us at the next fetal echo.  So, the news was good.

It was, however, a deeply frustrating visit.  The tech noted that she had seen my file, but hadn't had a chance to review all the fetal echos.  I told her what I knew.  She talked about how she was planning to take a fetal echo class in the future and that she must need it because she couldn't see the VSD.  I told her that the cardiologist had told us it was hard to see because of its location, so it didn't mean she was necessarily bad at it.  I didn't really think anything else about it until the doc came in and the first thing she started with was how she just didn't see anything wrong with the heart.  She indicated that the docs at the hospital would be able to have a better look once they could do an echo directly on Jellybean after he was born, heavily implying that she thought there was nothing wrong and it would show that.  This made me really mad.  We've now had two different cardiologists do painstakingly long and involved echocardiograms on Jellybean and they both saw things that concerned them, but here is the high risk ob--who has some knowledge, but it isn't her specialty--heavily implying they are wrong and we're getting worked up about nothing.  I get that medicine isn't always precise and that the very nature of a fetal echocardiogram increases the inability to provide a precise diagnosis right now.  But, honestly, it doesn't help to keep getting pulled in every direction.  Maybe she thinks she's helping, but she's not.  Just when I think I might have a handle on my stress and my emotions, it feels like the world gets yanked out from under me.

My gp has adjusted my anti-depressant and it seems to be helping, but, at the same time, my baseline keeps moving.  Fortunately, I have another visit with him coming up to talk about how I'm doing with the new meds, and I hope to get a little help about whether I'm handling things appropriately and what to do with all this conflicting information.  I also have a visit with my regular ob in 2 weeks, a few days before the next fetal echo.  I have more confidence in her than the high risk ob--and a better relationship--so I'm hopeful she will be able to help me sort through this stuff.

Ultimately, I won't know anything until the next fetal echo, so it's mostly just an issue of keeping my head above water and trying to stay functional until then.  Usually, I would do this by planning and researching, but now that only seems to bring more anxiety because I'm not sure if I'm doing it needlessly.  I had just started researching the hospital in Detroit where I would deliver if it comes to that and, suddenly, I'm overreacting in the eyes of one of my docs.  I'm trying to get a handle on what having a c-section versus natural delivery would mean, not just in terms of recovery, but what it means for disability leave and medical bills and being able to be present to help with the kid to come and the kid I have, and I keep being told that there's no reason for a c-section because, even if there is something wrong, Jellybean can probably tolerate natural delivery and that's really what's best.  Really?  How can we even say what's best when we don't even know all the parameters yet?  My guideposts keep getting moved, my whole foundation is unstable, and all I can do is flounder.  I hate feeling stuck.  I hate feeling powerless.  I hate having knowledgeable professionals tell me vastly diverging beliefs about the health of my child.  Medicine is great and the advances it provides for are amazing.  But right now, all I want is a definitive answer or, barring that, a little consensus.  Is that really too much to ask?

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