Power of writing

Sometimes things are looking so down that I just don’t know if I’ll be able to get back up again. Then I write. I get it all out, all the dark feelings. I acknowledge them, say, “I know you are here” by putting them onto the page (or WordPress text box). And you know what? It helps. It really does help. Every time. Sure, the fears and hurts are still there, but they have less power over me.

Realizing this makes me wonder if other writers gain something similar. There are a lot of loss mom blogs (and some loss dads too), many of whom pour their hearts out like I do. I hope they get the same healing from their writing that I do from mine.

I never kept a diary as a child, although I did write some angsty poetry as a teenager. I never saw the value of a diary but now I do. If I am lucky enough to have a child, I will definitely encourage her or him to write as a way to distill feelings.

hopefulness shrouded in fear

I wrote a post on June 18 showing off my baby bump at 20 weeks, when Ada was as big as a banana. The photo was taken the day after Ada’s anatomy scan, and I wore a pink ribbon because I was so excited to find out she was a girl. I painted my toenails pink and dreamed about how we were going to raise this little girl to love science yet be feminine (if she so chose). It was one of the happiest times of my life.

About a week later, a woman hit our car from behind as we were on the way back home from Buy Buy Baby, where I had purchased a baby bath thermometer so I could safely relax in my new master bath. A week after that, Ada silently passed away. I didn’t know that she had died until the following week, at 23 weeks, when I went in for a routine doctor’s visit. The only clue I had that anything was amiss was a little bit of cramps, which are fairly common in pregnancy, something that my doctor at the time dismissed. I keep playing that time over and over in my mind, looking for clues, wondering what happened, wondering if we can connect the car accident to Ada’s death. If not, that means there is another reason why Ada died, something I can control even less than I can control traffic. Whatever the cause, my body failed to protect her, and failed to let me know anything was wrong. I know it’s not my fault, but I can’t help but think that my body is the cause of her death. It certainly didn’t help.

Today is the day after Rose’s anatomy scan. No pink ribbon today; I woke up crying and wore all black. I somehow managed to function all day at the office, but I started crying again the moment I got home. I desperately want to be happy to have reached the 20 week milestone yet again, but the fear and sadness is stronger. Will my body fail me again? Fail her? Fail my husband? Every day, I think this might be the day. Every time I check for a heartbeat, I think this might the time I won’t hear anything. I come up with elaborate plans for what I will do, who I will call, where I will go – even though I know that if I don’t hear a heartbeat it is probably too late. I’m so thankful that I can feel her move sometimes, but I wonder if it will be the last time.  When she’s not moving, the panic that she may already be gone slowly increases. I really don’t want to be so negative but it’s just there. Like a darkness that can not be resolved, too dark to penetrate with any light.

Word is getting out in my office that I am pregnant. It’s sort of funny, I thought most people knew since I’ve been huge for weeks now, but I guess they didn’t notice. It is a big office. I’ve gotten a few “congratulations” and I know they are being nice but what are they congratulating me for? For being lucky enough to have eggs left, I suppose. I smile and say thanks, but part of me wants to say “save that for when there is actually a baby”. I feel like Rose deserves better than this, but what can I do? How could I even consider a baby shower or anything like that when tomorrow may be the last day? At least I am looking into prenatal classes, that’s my little shred of hopefulness, plus the hospital will refund the fees with a doctor’s note. I’m reading Pregnancy 411 again, but the labor chapter will be useful no matter the outcome. A big part of me just doesn’t believe this will conclude with a living child.

I want to be celebrating each day that I have with Rose. I should be happy. I should be taking photos, not with fruits, but something, anything. I’m glad we are going for the 4D ultrasound on Saturday, though I wonder if I will cry as I did during the anatomy scan. I keep telling myself that I’m going to call around and schedule professional photos so I can have some good pictures of me and Rose, in case this time is all we get. I just don’t have the energy. It’s too overwhelming, this hopefulness shrouded in fear, the fear of being hopeful. I am thankful that I have the energy to write, at least. Writing takes a little of the charge out of the emotions, lets me think though the “why” behind the sadness. It might not make it better, but I’m glad to take off the burden for a moment. Now I just need to sleep.

Introducing Rose Marie

Today was our 20 week anatomy scan. They confirmed that she is a girl. Her name is Rose Marie Bodnar. I wonder if she will look more like me or more like Brandon. Ada definitely had my chin, so far it looks like Rose has Brandon’s nose.

Rose Marie

Rose Marie

We chose Rose because she is due in June and roses are the flower for June. I always wanted to name my children something plant-themed. Getting roses from my mom from July to December this year made me happy, and I hope Rose goes on to spread happiness as well. We plan to plant a memorial rose garden in our back yard for Ada, who was also born in June, we learned that my great-grandfather was a hobby rose breeder, and my Babcia grew tea roses sometimes in her garden. So she’s not named after anyone in particular, although there have been some impressive ladies named Rose. Like Ada, Rose is not a very common name for girls today, although it was more popular in the past. We chose Marie for Marie Curie, one of the most well known woman scientists. Marie Curie was Polish, and Rose is about 1/4 Polish.

All throughout the anatomy scan, I wanted to tell the technician and the doctor: “slow down, we just want to look at her face and see her move!” but of course the medical measurements were the most important part, and we were glad to hear that she’s developing right on schedule. We did get to she her nomming, opening and closing her mouth, which was pretty cool. We have a 4D ultrasound scheduled for Saturday, I’m really looking forward to that. She’s wiggling around a bit as I write this, I’ve been able to feel her since 15 weeks. I’m more than a little freaked out as we approach 22 weeks, but I’ll save that for another post. This one is for Rose.

Rosebud by Claudia De Facci via Flickr.

Rosebud by Claudia De Facci via Flickr.

Trying to celebrate

20131226-223210.jpgWe’re more than halfway through the holidays. First Halloween, Thanksgiving, then Christmas. Next up: our ten year anniversary on the 27th and New Year’s Eve. We truly do have much to celebrate. Great jobs, a comfortable house, wonderful friends, a loving family, our health, a healthy pregnancy so far…. but no matter how great everything is, there will always be someone missing.

This was supposed to be the season of Ada’s firsts. Her first Halloween, her first Thanksgiving, her first Christmas. We should be celebrating our anniversary and the new year with her, not with this hole in our hearts. Ada is always on my mind. It’s so strange to be celebrating while grieving, to be so happy while so sad. Maybe next year we’ll feel more in the holiday spirit, but I’m so glad we took it easy this year.

Image by S Chia via Flickr.

46andbaby

It was important to me to get some basic genetic data about my partner and myself before we started trying to have kids. I wanted to know if either of us were carriers for any particularly bad genetic conditions (or worse if both of us were carriers for the same disease). Having this info wouldn’t stop us from wanting to have kids, but the information can be informative. The data would let us know if we needed to seek more testing so we could make responsible reproductive decisions according to our beliefs and value systems. Since I don’t have any risk factors (under 35, no genetic diseases myself or in my family) I’m not high risk enough to justify getting the expensive medical grade tests, and my insurance won’t pay for it. 23and me was a great option for me to get this information.

I knew from the start that 23andme was for information purposes only. Of course it is not a substitute for medical grade tests or for regular family history based genetic prenatal screening. I knew that I’d need to follow up with medical grade tests if anything concerning came up in my 23andme data. For example, my results showed that I may be sensitive to warfarin, meaning I may need a smaller dose. If I ever need warfarin, I won’t take less than prescribed on my own, but I will ask my doctor to check me with a medical grade test so I can get the right dose.

Thankfully our results didn’t show that we are both carriers for any of the diseases that were tested by 23andme, and this information agrees with our family history information. This allowed us to be more comfortable with our doctors’ decision to not prescribe additional genetic testing. If we had found concerning information, it may have helped us justify to the doctors and insurance that we did need additional testing. Now, as a loss mom, having this information is even more important to me, especially since we weren’t able to get genetic information from Ada, our stillborn daughter.

Whys am I talking about this?

23andme is having some issues with the FDA because some people have interpreted 23andme’s claims as being too close to unverified medical claims. I agree that 23andme came too close to and may even have crossed that line and I’m glad they are working with the FDA now to solve those issues. It may have been clear to me that the results are for information purposes only but I know that I’m not a typical customer (since I have a doctorate in genetics). It would be great if the limitations of the test were made even more clear so people know what they are buying – although I don’t think 23andme was being dishonest about this to start with. It seems, however, that some people do think that 23andme was being dishonest to start with, at least according to the article DNA testing is not why 23andme is in trouble, that describes a class action lawsuit against the company.

For me, 23andme data was an important educational tool that helped me to get more information than I would have had without it. Taking this option away (through whatever means, banning or bankrupting or other) from me as a prospective parent would be a major loss for the reasons I described above. Maybe 23andme needs bigger disclaimers to emphasize that it is not a substitute for medical diagnosis and that people should follow up with their health care professionals (although I thought that was already evident) but I hope the class action suit doesn’t destroy a company providing such a useful service just to make some bucks for a few people. That would be a major blow not just to loss parents but to everyone who’s interested in learning more about themselves.

I just downloaded my full dataset as well as a PDF printout of my health report. Just in case….

Trauma in pregnancy

We’ll never know for sure what happened to Ada. From the tests that we were able to do, it seems that she was perfect – no developmental abnormalities, and I don’t have any genetic conditions that could have caused a problem (like a blood clotting disorder). After talking with yet another doctor, it seems that partial placental abruption is a strong hypothesis for what happened. I had a trauma (minor car accident), followed by cramping (which is a symptom of abruption), and when I delivered the placenta there was old blood (indicating that there had previously been a minor abruption). And it’s entirely possible that Ada died simply because she had a loss of oxygen or nutrients due to an abruption.

The American Pregnancy Association has an article on Placental Abruption. What I find strange is that they instruct women to contact their health care provider if they have bleeding in the third trimester even though they say earlier in the article that “about 20% of cases will have no bleeding” and that abruption “usually occurs in the third trimester but can occur any time after the 20th week of pregnancy”. So what are women who suspect a placental abruption prior to the third trimester with or without bleeding supposed to do?

In my case, assuming it was a partial abruption, I should have immediately gone in for observation, and probably should have been on bed rest (based on what I have read, because of course I am not a medical professional). Yet, because I didn’t have bleeding, I was told not to worry and to go about my business. If I’d been put on bed rest would that have saved her? We’ll never know. But I do know that if I experience any trauma like a car accident or a fall during this pregnancy I will immediately go to the ER and request fetal monitoring. I’ll also put myself on bed rest or at least light activity unless I have good reason to believe it isn’t warranted. These are no-risk things that could prevent us from losing another baby.

What scares me greatly is that women who had a previous abruption are more likely to have another. Yet I had to learn this from a website, even though I have what seems to be a reasonably good team of doctors. Maybe they were just trying to not scare me but at this point, everything is scary so just give me the information already! Tomorrow is my first visit with the high risk doctor, a fetal maternal medicine specialist, and perhaps they’ll have more specific information for me (this is why I was researching abruption – so I can ask the right questions). Wish me luck.

Doppler

After my last post, my subsequent visit at the ob was far, far better. Apparently when I called with my concerns they didn’t realize my situation (even though I did explain everything) but long story short I now have big letters on my chart that say something to the effect of “give her whatever she wants”. In a perfect world, everyone would get that kind of care, but at least I’m getting it!

I was able to get my prescription for the Doppler with only minimal cajoling. I’ve had it for about a week and it was pretty hard at first to use. I was 12 weeks when I got it and couldn’t hear anything but the woosh woosh of my own heartbeat. The display would show 158 or so, though, so I did still feel reassured. The ob said baby’s heartbeat should sound like a galloping horse. This morning, I heard it! Definitely galloping! Such a lovely sound.

I wish we’d had a Doppler with Ada. I don’t think it would have allowed us to stop what happened but at least we would have known sooner. And it would have been nice to listen to her heartbeat.