Sunday, September 6, 2015

The Emotional Side of Waiting

The maternal fetal specialist called this morning with more results from my amniocentesis. The full karyotype that looks at all of Bridget's chromosomes in detail and can show up other chromosome disorders and abnormal genes aside from those tested in the FISH test will still not come back for another week or so.  But we did receive more good news this morning!  The lab used part of the amniotic fluid to test for any fetal infections or parasites, which can cause the echogenic bowel.  Thankfully these tests came back negative!

So yet another hurdle crossed.  To be honest, I had no idea they were using some of the sample to test for an infection or parasite. I assume the doctor explained this to us, but I was in my own head and sobbing by the time we were discussing the amnio so I didn't hear much after the whole brain cyst announcement.  (Which, by the way, are more common than I realized and almost always resolve themselves.)

I had a rough day yesterday and didn't feel well. My energy was extremely low and I generally didn't feel right. So of course I was worried that something was wrong with me or the baby. I spent the day Googling the time frame for a miscarriage after an amnio.  Most instances occur in the first 72 hours, but a miscarriage up to 3 weeks after the amnio is said to be correlated to the test. I also was worried that I was leaking amniotic fluid. Normal pregnancy discharge which typically doesn't give you a second thought suddenly becomes the enemy in the days after an amnio.  Is that fluid or discharge? This question is on repeat in my brain.  The doctor assured me that I'd know if I was leaking and would have to change panties as it's a constant stream, but I am still paranoid.

And of course I started questioning my decision of having the amnio at all.  I still think it was the right choice given all that was found on the ultrasound, but as we get further away and positive results are coming in, I'm wondering if I made the right decision. I didn't even ask any questions about the test when it was suggested. I just said yes. I already knew there was a miscarriage risk. But I didn't even ask what all was being tested for. I didn't ask if there was an alternative. I didn't take time to consider what I would do with the results.  Well, if I'm being honest, in that moment when she was listing off all the bad things they'd discovered, my first thought was, I cannot do this. I cannot raise a child with a severe disability. I'm not strong enough and it's just not happening. I can't do that to my boys. I will not do this. So I guess I didn't need time to ponder what I'd do with the results. My gut reaction was clear.

As was the one question I did ask after saying yes to the amnio: "What is the cutoff for an abortion in the state of Georgia."  The words just came out of my mouth. I needed to know if there would even be an option on the table. I'd still want to know what I was dealing with even if I had no option but to carry the baby to term, but that wasn't why I asked the question. When she said 24 weeks, I was relieved. I was 20 weeks + 4 days and even if the results took two weeks to come back, at least I still had an option. I know some people will fault me for that, but it's the truth in my thinking. I was taken aback by my own thoughts. I've always been pro-choice but I never thought I would be in the position of having to consider an abortion, never mind a late term abortion. In all honesty, I've heard the rumblings of those pushing for a 20 week abortion ban and I've always thought that was reasonable. Who in their right mind would even consider an abortion after 20 week?  Turns out, I would.

The morning before this terrible appointment, my daily Scary Mommy email summary was sitting in my inbox. One of the articles was entitled Why a 20-Week Abortion Ban Is Scary for All Women. I'd never considered this side of the debate. When I read the article that morning I certainly didn't think I'd be in her shoes, contemplating what I would do if the very bad news was delivered to me. But I encourage you to read her words.  I wouldn't ever attempt to know what is best for another person and I know that a decision like this is a deeply personal one. Yet, for many it is black and white. However, I firmly believe that you cannot possibly know what it is like to contemplate this decision until you are actually faced with making it. So far we're lucky to not actually have to make this decision, and I pray every day that we don't have to make it. But I don't think there are enough voices out there telling the personal side of this decision.  I have been feeling my baby girl move inside me for weeks now. She is deeply, deeply wanted by my family. And yet I am grateful that there are still options on the table should the last part of the amnio results come back with awful news.

Todd and I have had a lot of difficult conversations since Monday. What would we actually do? Could we actually go through with it if we were faced with bad news? Initially we were both  shocked and felt there was no way we could continue the pregnancy if we were given bad news.  And we both have felt deep shame for even having those thoughts. What does it say about my character that my initial reaction was that I would end the pregnancy? I felt that the fact that I was even considering that choice this far along made me an awful person. It doesn't. I know that now. We feel what we feel. We cannot censor our own internal feelings and to not acknowledge them will just cause guilt and residual negative feelings in what is already a difficult time.

I would say that as our conversations have continued, we both lightened our stance. We convinced each other that we were stronger than we realized. That the boys are more resilient than we were giving them credit for. We could, perhaps, handle the very bad news and continue with the pregnancy no matter the results, even if our sweet girl would be stillborn or would die a minute, an hour, or a few days after birth. It would not be easy, but we could do it.  The scariest outcome to me would be a diagnosis whereby she could survive birth but would have no quality of life. If she would suffer and be hooked up to machines and not even know us or feel our love. Would that be the best option for her? I don't know. I truly don't.

I can honestly say that at this point I don't know what decision we would make. I think it would depend on the specifics of her diagnosis. In a way it would be a relief to not be able to make a decision and to have to ride it out no matter what.  To be faced with the choice is a burden in itself, but it is a burden I would rather bear than the alternative of not being able to make medical decisions for myself and my child.

To think about the potential decision on a daily basis has been torture, but I can't escape the thoughts. It is constantly sitting below the surface.  What would I do?  I pray with every fiber of my being that I do not have to find out how I would answer that question.

1 comment:

  1. I have so much respect for you this brutally honest post. I'm thankful to have never been in a situation to consider these options. I've been praying for you and for your family and this sweet baby girl. Hang in there - you are so strong.