Results

After all the phone calls, messages, and finally speaking with my doctor - I got the real story. Which is still very much a story of, "we don't know". We don't know what my abnormal lab value means in the context of day to day life - I don't have a leukemia, so it doesn't mean that my counts are getting worse, I don't have any major clotting disorders, but I do have an increased marker for inflammation. In the context of pregnancy, my abnormal lab value means that I will have to take baby aspirin and heparin injections if we decide to have another baby. It means I have a one in three chance of getting HELLP again, and it means that I have done everything I can to find out my predisposition for HELLP, and now I have a means of "treating" to help avoid the early onset and severe case of HELLP that I had before.

I feel much more at peace with things - much more prepared to face another pregnancy - much more in control of my health. I like that feeling.

My main concerns now rest in not being able to birth a baby. Yes, I can have a baby, but can I actually labor and birth a baby - or will our next pregnancy result in another c-section under general anesthesia, where I don't even know what is going on, am out of it for hours afterwords, and take no part in delivering my child? I know that would upset me. Seems childish - so long as we have a healthy baby that survives, I should be so lucky. And yet, it doesn't seem to be enough.

Will humans never be happy?

Testing 1..2..3

At my six week check up after Aidan was born, I was told multiple times that this was a fluke occurrence, my developing HELLP Syndrome, and that I would be able to go on to have another normal pregnancy when I decided I was ready. I was told that my chances of HELLP again were about 30%, but to expect it would be less severe and come on much later if I were to develop it again. I was told that there was little or no research into why women develop HELLP syndrome - but that I would be monitored closely next time. And since at 6 weeks post delivery I was in no mood to entertain another pregnancy, I didn't pay a lot of attention to what they said.

Fast forward to two years later, and with our son as normal as a two year old can be. The thoughts of another child on the horizon - I looked into things a bit more. Turns out they were wrong. There are reasons that people develop HELLP syndrome, reasons for the hypercoagulation that I experienced. And those reasons are very serious. Don't get me wrong, many women have no underlying reason for their HELLP - but some do. Things like Lupus, Anti-phospholipid antibody syndrome, and genetic mutations that result in increased risk of thrombophilia.

I spoke with my OB, the man who saved my life - and told him my concerns. That while I realize that most women don't have any underlying condition, that I wouldn't feel I had done my best to deter HELLP again if I didn't have blood tests done to see if I have any underlying condition that would put me at increased risk. If I did have something, then there are additional treatments during pregnancy that can help reduce the risk. If I didn't have anything, then I wouldn't do anymore than take a daily aspirin and have increased monitoring throughout any upcoming pregnancy. Instead of taking me seriously, he gave me his best doctor smile and said, "there is no research that indicates additional treatment for unexplained HELLP." and while I didn't think of it at the time, I wish I had turned to him and said something equally as witty like, "there is no research that indicates my HELLP was unexplained." But I didn't I got flustered, I got confused, and I said that I wanted to have the tests for peace of mind - and while that is true, it is a glossing over of the reality which is that I want to know more. I want to find out if there is something wrong, if there was a reason, if I need to do more next time, if I suffered through all of this - the pain, the premature baby, the loss of my pregnancy, and all that emotional trauma for something that could be treated, that could be avoided next time.

He ordered the blood tests to appease me - not because he thinks I am smart enough to do my own research - to come to my own conclusions - to have information that might be worthwhile, but to appease me. So I had the blood tests done. And a few days later his nurse called, she told me most everything was normal. Anti-nuclear antibodies, anti-cardiolipin antibodies, Lupus antibodies, Factor V, most everything. Except for the beta-2 microglobulin, an indicator of inflammation. I asked what that meant in the grand scheme of things, but she wasn't sure. My doctor was out of the office on vacation for a week, and she would make sure he called me when he got back to discuss the interpretation and implications of this abnormal value.

And then I waited.

and waited.

and made phone call after phone call

and waited.

And three weeks later, after many nasty messages give to receptionists that I wasn't angry with - I received a phone call.

On my cell phone, that I left at home.

Figures.

My doctor said he has consulted rheumatologist, maternal fetal medicine specialists, immunologists, etc on this topic, and to rest assured that all is fine. And yet that doesn't ease my soul at all. In fact, it makes me feel like he is patting me on the head and telling me to run along and play. Belittled, written off, made to feel like a hypochondriac. Not a good feeling.

I will attempt to call tomorrow and get ahold of him - see how that goes. And move on from there.

Thank dog for IUD's - I don't have to think about babies for awhile - but when I want to think about having another, I don't want to worry that my fears and feelings and concerns won't be taken seriously.

2 years

It has been over two years since my last post - the post where I explained that Aidan was going to be born 10.5 weeks early, that my pregnancy was over, that life was changing in ways I couldn't even begin to imagine. And not only from the perspective of being a new parent - but the perspective of being a new parent to a preemie, a woman whose pregnancy was cut short, who was robbed of the chance to watch her baby grow insider her, to be miserable in those last weeks of pregnancy, to go into labor, and birth her baby as a mother should. I was a mother who was no longer pregnant, who had difficulty coming to terms with that fact, and who felt like she missed out on so many aspects of being a mother. While I had my precious boy - alive, healthy as a 29-weeker can be, and progressing every day in his fight to come home - I was missing something.

This 'loss' if you can call it that - has really had an impact on me. It has made he interested - in an almost obsessive way - with pregnancy, normal and abnormal pregnancy - with labor and delivery, with the thought of another chance at having a normal pregnancy and a full term (or full-er term) baby.

While we have no intentions of having another one anytime soon (think years here) - I have been doing a lot of reading and researching. I plan to post some of that information, as well as the ways in which I go about making myself more informed, more prepared, and healthier - for the second time around. I also hope to use this as a way to vent some of the feelings that I have surrounding my preterm delivery and the ways in which it has changed/affected me.