For Sale: baby shoes, never worn.

I first heard this 6-word story on NPR when they were starting a 6-word memoir project. It made me tear up but I didn’t know why. So simple, how can so much feeling be in these 6 words? I never expected that these words would become so personal.

This started as a happy blog where I was chronicling the progress of the pregnancy, somewhere to post silly pictures of my baby bump. Then, we lost Ada MaryJo at 23 weeks, a wholly unexpected loss that was more devastating than anything I’d ever experienced. I’m hoping to use this blog as a place to write about Ada and the grief I feel as we embark on trying to have another child. Maybe, just maybe, it’ll help me through the process of grief and maybe it’ll help other women going through the same process.

If you know someone who has lost a child, and you’re afraid to mention them because you think you might make them sad by reminding them that they died — you’re not reminding them. They didn’t forget they died. What you’re reminding them of is that you remembered that they lived, and that is a great gift.
~ Elizabeth Edwards July 3, 1949 – December 7, 2010

Get your flu shot, please.

We are in the midst of the CDC’s National Influenza Vaccination Week, December 6-12, 2015. It’s still critically important that anyone who is able get their flu shot as soon as possible. Not only are you protecting yourself, you are also protecting the vulnerable people around you.

While death from the flu is thankfully rare, it does happen. One mother who knows this all too well is Rebecca Hendricks. Her beautiful daughter, Scarlet Anne, was one of 147 children in the US who died of the flu during the 2014-2015 flu season. I urge you to read their story at Shot of Prevention.

One reason why some pregnant women fear getting a flu shot is that they worry it can cause miscarriage and stillbirth. Thankfully, there is no evidence that the shot can harm an unborn child, and plenty of evidence that the shot can help protect mom and baby from the flu.

As a loss mom, I can somewhat understand the pain that Rebecca is going through, and I can understand the worry that causes some moms to forgo the flu shot. My first daughter, Ada MaryJo, was stillborn in 2013. While we suspect a car accident was at least part of the cause, we never got a firm diagnosis. In up to 50% of all stillbirths where an autopsy is performed, the cause is never discovered. Even a higher number of miscarriages are unexplained.

Now that obstetricians are recommending that every pregnant woman get the flu shot (along with the CDC, Mayo Clinic, and others), it’s easy to think “I got the flu shot and lost the baby”. While I can totally understand that thought, there’s a lot of things that we all do that certainly don’t cause miscarriage or stillbirth even though there’s a high correlation. For example, most women eat saltines and drink ginger ale while pregnant, so most of us that experience miscarriage or stillbirth had eaten saltines and drank ginger ale. Of course that doesn’t mean our loss was caused by those things!

To make things more confusing, very few medicines or vaccines are tested directly on pregnant women or babies. It’s a difficult debate (Lancet, Healthline) where the need for information comes up against the need to protect developing babies. Thankfully there are more and more studies of the flu vaccine in pregnant women all the time, but they are more rare than studies in non-pregnant adults. So, many vaccines are indeed untested in pregnant women.

Vaccines often end up in pregnancy drug category B or C because the only safety evidence is from studies in pregnant animals. What does this mean? If a vaccine is in category B or C it means we just don’t have enough information. This does not mean there’s evidence it’s unsafe (that’s category D or X). Thankfully, scientists have followed up with studies of pregnant women.

A recent example of a huge study is Risk of Fetal Death after Pandemic Influenza Virus Infection or Vaccination, published in January of 2013. The researchers (funded by the Norwegian Institute of Public Health and the US National Institutes of Health) looked at 117,347 pregnancies in Norway from 2009-2010. Of all these pregnancies, 570 babies were miscarried or stillborn (4.9 deaths per 1000 births). For comparison, the US has 6.25 stillbirths per 1000 plus many more miscarriages.

Among women got the flu vaccine, women who had the flu during pregnancy were more likely to lose the baby compared to women who did not have the flu. Among women who did not get the flu, women who had the vaccine were less likely to lose the baby than women who were not vaccinated. Today Health has a nice summary of this study: Flu vaccine safe in pregnancy, study confirms.

Another way to look at potential problems with vaccines is to look for any potential adverse reactions that could be related to taking a medication. The CDC collects such data in the Vaccine Adverse Event Reporting System (VAERS). Adverse events reported in pregnant women were described in the study Adverse events in pregnant women following administration of trivalent inactivated influenza vaccine and live attenuated influenza vaccine in the Vaccine Adverse Event Reporting System, 1990-2009.

Between 1990 and 2009, there were only 20 miscarriages or stillbirths reported by pregnant women who had taken either inactivated or live attenuated flu vaccines. This means there were just 1.9 miscarriages or stillbirths per million pregnant women vaccinated (again, for comparison, the US has 6.25 stillbirths per 1000 plus many, many more miscarriages).

Between these two huge studies, it’s clear that the flu vaccine has a protective effect, with far fewer miscarriages and stillbirths in women who are vaccinated than in women who are not.

Of course, these aren’t the only studies that found the flu vaccine to be safe – you can find a ton more at PubMed. One great thing is that More types of flu shots available than ever so we can pick and choose the ones that we feel most comfortable with, based on the latest research.

Author’s note: A version of this post originally appeared at Remembering Ada. This updated article has been posted at Science Moms.

Every day we can do better

I haven’t written here for a long time. When I’m not at work, pretty much every free minute is taken up with Rose or trying to clean the house or things like that. Rose is spectacular, amazing, just every detail is a joy, even the hard parts like sleepless nights are nights I get to be a mommy making my baby feeling better. I am loving every minute of it.

But that doesn’t mean I don’t think of Ada every single day. Every joy I relish with Rose is a moment I don’t get with Ada… a tinge of sadness with every milestone. In saying silly things to Rose, I accidentally say something like “you’re my favorite baby ever” or “you’re the best baby ever” but then my heart catches in my throat.

My two girls: Ada and Rose. One whose life never begun and one who has her whole life ahead of her. Death and life, sorrow and joy. I have a fierce, incredibly powerful need to do everything I can to make Rose feel safe and happy. I wonder if it’s stronger because of Ada, but I think most moms feel this way. I often think about how powerless I was to help Ada and how thankful I am to be able to provide for Rose. I want to do things for Ada too, but since she isn’t with us, I have to do things for others.

Today on NPR there was a story about a homeless family in DC: mother and father with 4 children including a 2 year old and an infant. The mother said they had to live in their van for a while because they couldn’t afford to stay in motels and there was no space for a family in the shelters. It was so cold this winter. She said she was barely sleeping because she kept checking to make sure her babies were still breathing. I do not know the hardship of not having a place to live. But I know the fear that makes you check for the rise and fall of your sweet baby’s chest. Thankfully the family is now staying in an apartment-style shelter and they hope to get back on their feet this year. I hope with all my heart that baby grows up strong and healthy.

The story reminded me of something I saw recently in a moms’ group on Facebook. A mom was driving back from dropping her toddler and baby off at daycare when she saw a woman struggling in the cold to walk with groceries and her toddler and infant. The driving mom thought she could stop and offer to drive them home. It couldn’t be that far, and the kids would fit in the carseats. But she just kept on going because she thought it would be weird to offer help. I saw a homeless man in Bethesda after I had just spent too much on lunch and I knew a snow storm was coming but I just passed him by. We aren’t very good at helping each other. We can do better. I can do better, for Ada.

It doesn’t get better

I wish I could say that things get easier, that as the pregnancy progresses and Rose is squirming away that the terror decreases. But it really doesn’t. We’re 35 weeks and 3 days now. While sometimes it feels real, that maybe we will come home with a baby in a few weeks, most of the time I just have this sense of dread. Every cramp, every twinge, I wonder, is this the beginning of the end? I’m so scared things will be the way they were with Ada. That Rose will just quietly slip away, despite all the tests and ultrasounds and extra doctor visits. That instead of a happy labor with a light and baby’s first cry at the end of the pain, that all we’ll have is a dark and silent room.

A pregnancy app on my phone popped up a question today: “Have you had your baby? Is it a boy or a girl? Move on to the next stage and track your baby.” (or something like that) and it just floored me, and I cried like I haven’t cried in months. I mean, what if you aren’t taking your baby home from the hospital? Why isn’t there an option for that? I had a baby girl, but moving on to the next stage, from pregnancy app to baby app, wasn’t an option for me. I still get emails sometimes about Ada, where some database didn’t quite purge her from the system, that cheerfully explain that she could be starting solid foods, or that she should be starting to crawl soon (I actually kind of like these now, but boy were they hard at first). I wish there was an other button, something like “Other outcome” and then in smaller print “if you’ve experienced a loss, please click here” so women could find other information relevant to their situation.

It’s so frustrating that everyone assumes that once you are pregnant you will take home a baby. It makes me feel even more isolated. Where do you go with these feelings? I certainly can’t take them to any loss groups, I just got effectively kicked out of one for trying to share how hard this is, for trying (badly) to ask for help, advice, a shoulder. So, that’s not an option. If people knew that pregnancy doesn’t always end up with a happy outcome, maybe it’d be easier to talk about.

Maybe if the silence about stillbirth was broken, people wouldn’t be so fast to ask “is this your first?” whenever they see a pregnant woman. I hate hate hate that question. I know they mean well, and it’s just a normal thing to ask and usually the person asking has something dumb to say like “enjoy your sleep while you can!” or they tell you how much they love their kids even if it’s hard in the beginning. No, this is not my first. I have a daughter, her name is Ada, and she was beautiful. Her ashes are in my dresser and I say good morning and goodnight to her picture every day, only one of two pictures that I will ever have of her because no one thought to tell me to take any pictures, and yes I am still very angry about that. But how can you say that to someone in passing?  So I end up either saying “yes” or worse “sort of” in hopes that they will ask what I mean so I can talk about Ada at least for a few seconds. And that’s me, keeping the silence even as I quietly rail against it.

It’s overwhelming, trying to simultaneously experience the highest joy and the deepest sorrow that life can bring. In addition to planning a nursery, I need to be picking out a rose tree so we can plant it with Ada’s ashes underneath. I wanted so badly to make our little backyard a nice garden to be a home to Ada’s roses, but it’s a bit unrealistic when by the time winter was finally over I was already 7 months pregnant and then we had contractors stomping around the yard to make sure our house doesn’t fall down. I’ll settle for planting some butterfly attracting flowers in pots on my deck as soon as we have the deck power washed and resealed next week so I can sit out there with the dogs. All of these things seem so normal… normal people get their deck power washed. But it’s not normal. And it’s not getting better. At least not yet.

Changed

We made it to the third trimester, and then some. My pregnancy app says we are at 27 weeks and 1 day today – 90 days to go. I’m so thankful that everything seems to be going well. My ob office and high risk ob are seeing me alternating weeks so I have an appointment to look forward to every week. Rose seems to be developing perfectly, she was in the 45% percentile two weeks ago at her last growth scan. Part of me is starting to fantasize about holding her, about her dad holding her, but I’m terrified to let those thoughts go too far. I can’t even believe we made it this far, it’s like I’m waiting to wake up. Waiting for the other shoe to drop.

I know that Rose should “bake” as long as possible but every day part of me wishes I could just go into labor early. She’s doing well today, squirming around while I’m in meetings at work and while I write blog posts, but who knows what will happen tomorrow? We get used to things being one way and then everything can change in an instant. Death sneaks up on us. Ada has certainly changed me in many ways, one of which is being more cognizant of mortality.

We humans are so far removed from nature most of the time, it’s so easy to forget that people die. Death can be such a shock. Even when our loved ones are elderly and sick, part of us never really expects them to die. We expect everyone to be timeless, to be timeless ourselves. Each time a loved one dies, not only are we mourning the loss of a loved one, I think we also mourn the loss of our immortality.

After stillbirth and miscarriage, we mourn the death of our child and we also mourn the loss of our innocence. No subsequent pregnancy, if we should be so lucky to have one, can be without fear. Instead of expecting happiness, we expect grief. We’re changed.

Dreams

I’ve been having a lot of strange dreams lately. Many have themes of loss, either of things or of people. Weird dreams can be a symptom of pregnancy, but this isn’t new for me. I’ve always had anxiety dreams of various sorts, including a recurring dream of missing a flight.

I don’t believe there’s anything spiritual or ghostly about dreams, although they can be so powerful that I very much understand people who do believe they are messages or omens. I believe dreams are just the brain’s way of resting. Flipping through bits and pieces of your memories and putting them in weird combinations while you sleep, all heavily flavored with whatever your mental state is at the time. For me, that appears to be anxiety most of the time, and since Ada passed away there’s been a lot of sadness as well.

I was taking a nap a little while ago that was so powerful that I woke up crying even though nothing was really sad in it. It’s been a few days since I had a good cry – maybe it was just time.

I think we were either moving into a new house or were on a trip somewhere in a place that had some shared living areas. I overheard my sister and cousin talking and singing (as children, maybe someone was watching a home video) and that reminded me of my time in the Girl Scouts. So I put on my green Cadette beanie. A workman walked in to do some plumbing or other work in a common area and he’d brought his daughter with him. She was so cute, maybe 4 years old, wearing a Brownie sash and beanie with a pink jacket. I couldn’t help myself so I went to say hi. I said I used to be a Girl Scout and that my name is Anastasia. She was so shy, she mumbled and looked at the ground. I said “it’s ok, can you speak up”? I had to coax her a bit then finally she said loud enough to hear: “I’m Ada.” I immediately started crying and couldn’t stop even though I had thoughts running through my mind that this child would think I was crazy. I didn’t want to say the wrong thing or make her think she had made me cry. I had no idea what to say, how to start to explain. Then I woke up.

Rose Marie at 20 weeks

We just got back from our first 3D/4D elective ultrasound with Rose Marie. I wholeheartedly recommend this for all expecting moms, especially ones that have had a loss before, or who are at risk. I really wish we had this experience with Ada, but I am certainly glad we were able to with Rose. Whether she makes it to delivery or not, I will be glad for the photos and video. Even more so, I am glad for the experience. We are planning to go three times: 20, around 26, and around 33. This way we get to see her when she has lots of room to flip and swim, then in between, then when she has her chubby cheeks all filled in. I can’t wait to go back and see how she’s grown!

Rose was very active, and it was really neat to feel her moving and also see it on the big screen. She’s pretty thin still, but we were able to see her face. She was super busy, stretching her legs, moving her arms, making sucking motions with her mouth. She did a full flip (consequently showing us that yes, she is a girl). She moved her feet up to her head, and grabbed her feet with her hands. I love watching her heart beat in the 2D ultrasound. I almost cried when I saw her, but then I was just so full of wonder and love that I didn’t end up crying.

(click on an image for a slightly larger image)