Total eclipse of the heart, placental results, and other ramblings

Luke’s second birthday is on Monday, the same day as the eclipse. We’re packing up the kids and our stuffed turtle and heading to South Carolina to hopefully witness the moment of totality, since in our area the eclipse coverage will only be about 80 percent. I ordered matching custom T-shirts for all of us so that we can represent Luke among the eclipse watchers.

When I first realized that Luke will be sharing his day with the eclipse, I was honestly kind of pissed, because I thought, how can he possibly compete with a TOTAL SOLAR ECLIPSE? An event that most of the US hasn’t experienced since I was in seventh (eighth) grade? But then I realized the power of merging the two occasions, of asking people to remember Luke, and all the babies gone too soon, as they are looking up and pondering the cosmos. I hope they take up the call.

Borrowing an idea from Sidney’s mom, I have also asked people to perform an act of kindness that day, for themselves or others, be it sleeping in, smiling at a stranger, buying someone’s coffee, donating to a cause they find meaningful, planting something for pollinators, lighting a candle, or writing his name on a special rock. And I’ve asked them to use his name, either to say it out loud or offer it silently as an intention as they perform their act of kindness. I picture these acts rippling out into the world with my baby boy, his sweetness and innocence and purity, at the epicenter. Especially in light of recent events, it’s a comforting thought.

It is, of course, hard to believe that it has already been two years. In that time I have quit my job, completed several semesters of community college, entered grad school, and became a master naturalist. Honestly, I am not sure that I would have done any of it if I hadn’t lost him. His death jolted me into reevaluating my entire life. It made me realize that there are way harder, scarier things than changing careers. That we have too little precious time to go after what truly makes us happy. That my family comes before everything.

In that two years I also had a miscarriage and somehow, by the grace of all that is good in this universe, a second living child. I lived through the most terrifying, the most anxiety-ridden, the most sleepless 37 weeks I have ever experienced. There is no fear like the fear of the unknown. Kick counting became so ingrained into my every moment that I thought for sure I would be reaching for my phone to log movements for weeks after Wyatt was born. But now, that all seems like a distant memory, though it does come flooding back if I reach deep enough. For months I injected myself with blood thinners and took supplemental folate. In the weeks after Wyatt’s arrival, it seemed like a milestone when I was finally able to stop those treatments. Now they, too, are a distant memory, though I still have the bruising on my belly to remind me of what I went through to bring my child into the world safely.

In May we received the results of Wyatt’s placental pathology. His placenta was normal! It was above the 75th percentile, and there was no evidence of an immune response. Either the treatment worked, or there was no immune response this time. We will never know.

One of the projects on my plate this fall is to add a section on this blog specifically for the resources I’ve gathered on these immune conditions in pregnancy (the MPFD/MFI/VUE/CHI spectrum). I’ll also be sharing the stories of other MPFD/etc moms. I’m contacted several times a month by readers who stumbled across the blog after experiencing an immune-related loss. There’s not much out there that’s written for the patient; it’s mostly dense journal articles full of despair, and the readers are seeking information—and hope. So I’d like to make this blog more of a resource, as one way to amplify the meaning of Luke’s life. Stay tuned.

How to honor a loss anniversary, and other thoughts

A local loss mom friend and blogger over at Surviving the Loss of Baby Sidney is approaching the first anniversary of her son’s death and recently sent an email to family and friends with suggestions for how to mark the occasion, including the following:

First, I am asking people to do something kind for themselves or someone else on May 4th. This can range from smiling at someone in the street or allowing yourself to sleep in, to donating your time or money to an organization that you believe makes a positive difference. I need to know that at least a little bit of good came from Sidney being part of the world for the short time that he was here.

Second, if you would like to, please send us a stone from a place that is meaningful to you, with a slight description of where you found it, so that I can put it at his grave (Jews traditionally leave stones when they visit graves of loved ones. While the reason behind this seems somewhat unclear, my favorite explanation is to indicate that the loved one is remembered and thought of, with an object that lasts longer/is more permanent than flowers).

Finally, do not be afraid to let us know that you are thinking of us, and to say Sidney’s name. Hearing Sidney’s name does not upset me–what upsets me is that he is dead. Instead, knowing that others remember him makes me feel like I do not have to carry him around in my heart alone. Lighting a candle in his memory (or sending us candles, trees, buying us stars, making a dedication in his name etc–I hope I have included everyone/everything) or simply reaching out to tell us that you remember him, has meant so much and will continue to mean so much.

I love the idea of doing something good in his name on that day, and wanted to pass it along as a suggestion to my readers for honoring any lost children that you know. I wasn’t aware of the Jewish tradition of leaving stones, but my daughter loves rocks and always leaves one at Luke’s grave, so I will have her pick one out for Sidney, and we’ll plant some flowers next to Luke’s bench in our garden as well, so our boys can be together.

In other musings …

The other day I was wearing a hoodie (before April suddenly turned to July) and in the pocket I found a memorial necklace that someone must have given me at some point, only I have no memory of receiving it. I received a lot of jewelry after Luke’s death, and it’s hard to keep track of who gave what, but I still feel bad about blanking on this one.

After spending so much time obsessing about fetal movement during Wyatt’s pregnancy, I thought for sure I would be counting phantom kicks for weeks after he was born. Strangely enough, though, that already seems like a distant memory, and I can’t even remember what the movements felt like, or what it was like to be chained to my KickCounter app.

Wyatt has been sleeping for longer stretches, and last night he slept through the night, until just after 5 a.m. So that’s obviously great if he starts doing that consistently, but now I also need to decide whether to throw in a middle of the night pumping session, because, well—holy boobies, Batman.

I took Zoe to her 4-year checkup last week, and when the nurse practitioner asked Zoe to list who lives at home with her, she named myself, my husband, Wyatt, and Luke, which made my heart swell, but then when I said, “Well, Luke lives in heaven,” the nurse practitioner said, “Awww, is that a pet?” and I wanted to punch her, but Zoe kept talking, and the moment passed.

I suppose it’s marginally better than my encounter at Zoe’s third-year checkup, when, after I informed the doctor of Luke’s death, she said she wasn’t aware that losses could occur that late in pregnancy.

At Zoe’s birthday party, while I carried Wyatt in a sling, I struck up a conversation with the mom of one of Zoe’s classmates. She is a perfectly lovely and sweet person, but I don’t think she knows of my loss, and she mentioned that Zoe’s friend was born when her daughter was only 2, and it was difficult to have two children of that age, and it’s so much easier to have a baby around when they are 4, and more independent. And I wanted to tell her that Zoe should have been 2 when her first brother was born, because normally I don’t have a problem telling people about Luke, but I just couldn’t figure out a way to bring it into this otherwise innocuous small talk, and so I didn’t say anything, which made me feel sad and also guilty, like I wasn’t honoring Luke properly. It also reminded me of how much of a gulf will always remain with other moms who haven’t experienced a loss, and how conversations can still catch me off guard, and break my heart.

Recently I’ve attended a few services at our local Unitarian Universalist congregation. I suppose I’ve been searching for something different, as our current church didn’t provide any support when Luke died, and his death also further cemented my agnosticism, wherein it’s difficult to believe in a God who would allow children to die, but it’s also difficult not to believe that some kind of being was responsible for this amazing, incredible universe. Anyway, the UU church actually cares about things like climate change, and people’s suffering, and everyone is really friendly, and the pastor (is that what you call him?) this past weekend gave a sermon (is that what you call it?) addressing a racism controversy among the higher ups of the national organization. His openness was refreshing and something I’m not used to. So I like it there, but when it comes to spirtuality, basically I am still kind of wandering.

 

Six weeks

Wyatt turned six weeks old on Thursday. I’ve been debating about sharing too much about his birth and life on here as I want to protect his privacy. But here are a few things I thought I’d relay.

Both Zoe and Luke were born vaginally, and Wyatt was a planned induction, but he ended up being delivered by c-section. On ultrasounds, his head had consistently been measuring above the 99th percentile. He was also crooked in the birth canal. So when his ginormous head met by pelvic bone, it couldn’t get past. I was in immense pain by that point thanks to pitocin, which can induce incredibly strong contractions, and after over an hour of pushing (and six-plus hours of contractions) I just didn’t have anything left. Unfortunately, the epidural didn’t take full effect until I was being wheeled back to the OR. Then it took like four hours for me to regain full feeling in my lower body.

The rest of our two-plus days in the hospital passed in a haze. He had jaundice, and while he didn’t have to go under the special lights, he wore this weird glowing pad/blanket thing under his swaddle, so we called him a glow worm. For a while he was making these little critter-like sounds, so we also called him a guinea pig.

I’m incredibly proud to say that he is exclusively breastfed. With my daughter, I had low milk supply and had to supplement with formula her entire first year, which isn’t the worst thing, but it wasn’t how I envisioned my breastfeeding experience. With Wyatt, we have also encountered a fair number of roadblocks, which I may detail in a future post, but nonetheless I have been able to maintain sufficient production. I say this not to boast, as I have endured the pain of low supply in the past, but because I am proud of myself for persisting.

I’m not a particularly materialistic person or much of a consumer, and clutter stresses me out, so I’ve never had a traditional baby shower for any of my kids, and I’ve passed on a lot of the traditional baby items that people purchase. For example, we never had a true diaper bag for Zoe. We used a big black bag whose origins I don’t recall. But then the handle broke. For Wyatt, we’d been using a bag that a nonprofit sent us as thanks for a donation, but it’s a little smaller than I’d like and doesn’t have many compartments, so I found myself drifting to Etsy to order a real, actual diaper bag for which, like everything on Etsy, I paid way too much. I’ve also ordered a few pairs of pajamas that he doesn’t need and a couple of nursing tops that, truthfully, I don’t really need. I’m not really sure where these impulses are coming from, other than to reward myself for enduring the incredibly difficult experience that is pregnancy after loss, and to celebrate in some small way the birth of my rainbow child, which I had previously been too scared to celebrate.

With both of our living children, my husband and I have found humor to be a great coping tool for the intensity and stress of the early newborn days. Hence, when he cries over something like being slightly jostled or having his diaper changed, we pretend we are Wyatt and say indignantly, “Why would you DO that?” Or when he starts crying, it’s fun to shout, in my best George Costanza voice, “I’m gettin’ upset!”

Speaking of stress, I think that postpartum depression is something that needs to be addressed more honestly in the baby loss community. No one wants to admit that they are overwhelmed or stressed by caring for the rainbow baby they so desperately wanted and wished for, or that they feel trapped in an endless cycle of feeding, calming, and diaper changes, with no hope of ever returning to a sense of normalcy. I had these feelings with Zoe, and while they have existed to some degree with Wyatt, and caring for two children simultaneously is an adjustment, I have much better coping tools this time, and I also have Zoe as proof that eventually it all does stop and get easier. Still, I think it’s important for a loss mom who is caring for her first living child to be comfortable acknowledging these feelings, and not feel a lot of guilt and shame in the process.

Wyatt is already in three month clothes, and we just had to adjust his car seat, and he no longer smells like a newborn, and the past few days, he has been giving us adorable huge grins, and staring at lots of things in his surroundings. So he’s already growing up fast, and just like everything with raising kids, both living and dead, time passes so quickly, even when it seems like a lifetime.

Regret

Out of all the things I regret about Luke’s loss, one that brings among the most pain is that we didn’t spend more time with him after he was born.

On the day he died, a friend who’d lost her newborn son alerted us to Now I Lay Me Down to Sleep, a photography service for parents experiencing perinatal loss. But then I ended up delivering him in the middle of the night, when the photographer wasn’t available. For some reason it didn’t occur to me to wait a few hours, when the photog would be on call again. As a result, the only photographic evidence we have of his existence are a few grainy shots taken by the nurses; the only way I have come to know the details of his face is by cropping in on a photo taken of the three of us from about 10 feet away.

We didn’t bathe him or dress him either. We simply held him and kissed him and cried. He seemed so fragile. And then after an hour or two, we gave him away forever.

Our hospital at the time didn’t have a Cuddle Cot, a cooling device meant to give grieving parents more time with their children. Thanks to a lobbying campaign by a few of us local loss moms, the hospital now has one. But that option wasn’t available to us, and we were robbed of the opportunity to spend hours or days with our son, the only time we would ever have with him.

I’ve met so many incredible loss moms, and I love them all. But it hurts to see how many of them have numerous beautiful, professionally staged photos of every part and parcel of their babies. At least they have that to hang onto. I don’t even have a lock of his precious hair. Only fleeting, drug-hazed midnight memories of the worst day of my life.

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Counting kicks, AKA how not to lose your mind during PAL

It’s 7:00 on a Monday evening. I’m suffering from a small cold, tired, and mentally whipped following my third trip to labor and delivery earlier that day due to concerns over possibly decreased fetal movement (during which everything, once again, checked out OK). There are many things I could do. Head into the kitchen to help Zack with the dishes. Play games with Zoe. Collapse into bed. But I’m rooted to the dining room chair, unwilling to move from my spot, because the baby is kicking up a storm. And I’m afraid that if I get up, he’ll stop, and I’ll start worrying again.

Welcome to pregnancy after loss. When you’re so focused on monitoring fetal movement that your mind plays tricks on you and the slightest pause or decline can send your levels of anxiety skyrocketing. When you wake up in the middle of the night and don’t fall back asleep for hours, because you’re paying attention to how your baby is moving. When you can’t take a nap, because the baby is moving and you’re monitoring the movement, or your baby is not moving and you’re waiting for him to start moving again. When you’re constantly afraid that your baby has died or is about to die. When most of the people in your life fail to comprehend how much of an ordeal it is just to make it through the day, and you start to feel even more isolated on this Planet Where Your Baby Died.

6 kicks, 10 kicks, your baby’s pattern—what’s a mom to do?

Now into the mix let’s throw a heaping a dose of confusion and disagreement over what constitutes normal fetal movement.

Here’s what the American Pregnancy Association has to say on the topic:

The American Congress of Obstetricians and Gynecologists (ACOG) recommends that you time how long it takes you to feel 10 kicks, flutters, swishes, or rolls. Ideally, you want to feel at least 10 movements within 2 hours. You will likely feel 10 movements in less time than that.

But over in the UK, the Kicks Count charity offers starkly different advice:

There is no set number of kicks you should be feeling, what is important is that you know what is normal for your individual baby. If you notice a decrease in your baby’s regular movement pattern contact your midwife.

There is a common misconception that you should be feeling 10 kicks over a set period, this is no longer recommended as all babies are different. You can find out more here about the origins of ‘count to ten’ and why it is not used. Baby’s movements can vary from 4 to over 100 every hour so counting to 10 kicks would be irrelevant for most of the population. It is important to know what is normal for your baby and report any change in that.

The organization further notes:

One of the greatest challenges is the lack of consensus on what is a ‘normal’ number of fetal movements and over what specified time frame. Fetal movements vary from four to 100 every hour and so definitions of reduced fetal movement based on counting less than 10 movements in two, 12 or 24 hours are unhelpful.

For a mum who usually feels her baby move 50 times over 12 hours, if the baby reduced their movements to only 20 it could be a sign the baby is in distress. However if she used the count to ten method, she would not seek help as she met the ‘recommended’ number.

Likewise a woman who usually only feels 8, may end up phoning the hospital unnecessarily every day as she never meets the ten required.

The other issue with fixing a set number of fetal movements is there is no way to know what a woman is classing as her baby’s movements. Because it relies on perceptions from individuals rather than an independent monitoring system, there may be major differences between what one mum counts as her baby moving and what another counts as hers.

Therefore the safest and most reliable method of monitoring baby’s movements is to encourage the mum to get to know her baby’s own pattern of movement. She will then be able to determine if her baby has a period of reduced or increased fetal movement.

Count the Kicks, an effort of the admirable Healthy Birth Day stillbirth prevention organization, recommends a sort of amalgamation of these recommendations, instructing women to count the amount of time it takes to feel 10 movements, noting that could be hours for some babies and minutes for others, and to call the doctor if there is any significant change in movement.

With all of these recommendations out there, the obstetric community seems to be all over the map in terms of the type of fetal monitoring they recommend to moms. After one of my visits to labor and delivery, the hospital sent me home with a paper that alternately recommends contacting your doctor if:

  • You feel a change in the number of movements
  • You feel fewer than 10 kicks in 2 hours after counting twice

Meanwhile, my MFM’s office, which is generally pretty with it when it comes to stillbirth prevention, sent me home with a piece of paper that contains such alarming recommendations as:

  • If you have felt NO MOVEMENT by 2:00 pm on any day, call your doctor for advice.
  • If you haven’t felt 10 movements by 8:00 pm, write down the number you actually felt and call your doctor for advice.

The paper also recommends to stop at 30 during kick counts and to look for at least 6 movements in one hour during your count; “if you do not get 6 movements during the second hour, call your doctor at once.”

What constitutes normal?

The recommendation of the Kicks Count charity seems to make the most sense to me (and indeed, the folks over at the Star Legacy Foundation inform me that the 10 kicks in 2 hours guideline is based on 30-year-old research that many believe was improperly conducted, while the UK guidelines are based on a 2009 study). It’s quite common for my baby to move more than 100 or even 150 times in an hour, so if movements suddenly dropped to 12 or 8, while technically more than the recommended number of 10 or 6, it would be a cause for alarm. I certainly wouldn’t wait until 2 p.m. without feeling movement to call my doctor, nor would I wait until 8:00 p.m. if I’d only felt 10 movements.

However, determining what is a “normal pattern” for my baby has been quite a challenge, simply because he is a human being and doesn’t move in exactly the same way or at exactly the same time every day. He can have active days followed by sleepy days, active mornings followed by sleepy afternoons, sleepy mornings followed by active afternoons, and so forth. Many kick count guidelines recommend drinking juice, counting after a meal, and/or lying on your side, but my baby’s response to these actions has been everything from kicking up a storm to stirring in his sleep. Sometimes at 8:30 p.m. he’s got the heebie jeebies and sometimes he’s deep asleep.

Consequently, I’ve spent quite a bit of time since the second trimester crafting a kick count strategy that minimizes my anxiety and maximizes the amount of control I feel over the outcome of this pregnancy (although I am the first to admit I haven’t always been successful in this regard). I wanted to share some of my tips here, in case other baby loss moms find them useful.

Choose a number that works for you. In the second trimester around 24 weeks, I would often count all day long, or frequently throughout the day, in order to build up some objective data on how much baby was actually moving and to begin to look for patterns. Although it helped me to see that the baby was much more active than I’d made it out to be in my mind, this was tedious and mentally and emotionally exhausting. At the end of the second trimester and beginning of the third, I cut back to four hourlong counts a day (first thing in the morning, lunchtime, late afternoon, and nighttime). Now I’m at the point where I’ve been monitoring for so long that I have an instinctive feel for when the “pattern” is off (and I’m also being seen by a doctor three times a week), so I’m more often doing 1-2 counts a day, and less frequently 3, depending on how much activity there is on a given day. On active days I am likely to do fewer counts.

The point is to pick an amount of monitoring that gives you the reassurance you need to get through the day without being in a constant state of panic. It’ll be different for every baby loss mom, I think. Some may find comfort in counting all day and some may be content with just one count. Do whatever helps you to feel more in control. You may need to play around with it at first, and you may find yourself adjusting as the pregnancy progresses.

I use the Baby Kick Counter by Michael Kale app, recommended by Christine over at the chickydoodles blog (in the App Store, you’ll find it when you search for “kick counter”). It allows you to count all day whereas other apps stop at 10. You can also hit a button to easily count for an hour or count to 10. And it charts movements for the past several hours and days, and logs all the results of your hourlong and 10 counts.

Find your prompt. As I mentioned earlier, kick count guidelines often recommend counting after a meal or some juice or while lying on your side. If that works for you, go for it! Personally, I am just as likely to get a count above 100 while sitting up in a chair on an empty stomach than while lying on my side immediately after dinner. Ditto with a count of 50, which is low for my baby. So unfortunately, I haven’t been able to rely on a consistent prompt.

Chart the data. At around 28 weeks I started a spreadsheet for recording kick count results. This is much more objective than relying on memory and also helps me to compare results and to see how much movement has been consistently increasing the past two months. With placental insufficiency the cause of Luke’s death, I’ve been on the lookout for a gradual decrease in movements over a period of days or longer. Having all the data in the spreadsheet allows me to better assess what’s going on.

Enlist a buddy. I report most of my kick count results to my husband. This is helpful for a few reasons. First, if a count seems low we can decide together whether to go in for monitoring. And it allows my husband to also be aware of how the pattern is developing over time, so that he has more context if movement starts to drop. This helps take some of the pressure off me and involves someone who can be more objective and rational and is not caught up in and worrying about movement 24/7.

Let sleeping babes sleep. When I first started doing kick counts, I would often wake the baby up if I thought it had been too long since the last movement. However, I’m now familiar enough with his pattern to know that he rarely goes more than 45 minutes without moving. Since I want him to be a good sleeper on the outside, I no longer disturb his sleep by trying to get him to move.

When in doubt, extend the count. Since my baby isn’t always active at the same time of day, I can’t always expect the same result each day. If I do a count and get a result that’s lower than normal, or simply lower than I’d like it to be, sometimes I will extend the count for another hour. Usually in that time the baby will wake up some and I’ll get a better result.

Dial up your doctor. Each mom will determine whether there is a change or “significant” change in pattern differently. For me, on occasions when I’ve gotten kick count results that are on the low end of normal, or when the period between counts seems sleepier than usual, or when the baby has gone longer than normal without a sustained period of activity, I’ve gone in for monitoring. (In my previous two pregnancies, I doubt I would have even noticed these subtle variations.) I’ve been doing this so intensely and for so long now that I know that each of these scenarios can actually be “normal,” and while I won’t say that I don’t start to panic and worry, I don’t immediately go to Def Con 5. I give it a little more time and if after a few hours I still feel something isn’t right, I pick up the phone.

The point is that in a pregnancy after loss, and really in a pregnancy in general, there’s no such thing as going in too frequently to have something checked out if it doesn’t feel right. And if your doctor isn’t on board with that, then he or she isn’t doing the job.

Having an itchy trigger finger can be exhausting, though, and lead to burnout. So I do think it’s helpful to establish guidelines for what you yourself feel is not normal for your baby. Unfortunately, no one can tell you what that is, nor will it always be crystal clear, especially if you have an independent mover. And that’s one of the things that makes pregnancy after loss so tough.

Celebrate your milestones. In a pregnancy after loss, when fetal movement is never far from the back of your mind, just getting through the day can be exhausting. I think it’s important for baby loss moms to celebrate the passage of their pregnancy. For me I do that with a simple highly visible sign on my dresser that notes the number of days until the next gestational week, as well as the number of days remaining until week 37.

I hope other BLMs find these tips useful, and pick the ones that work for them. In reading back through this blog, I realize it may sound like I’m somewhat functional and on top of things. The reality is that this is the most intense period of my life I’ve ever had to endure, and on some days completing just small tasks can be a struggle. It’s difficult to enjoy life when you’re on constant alert for whether your baby has died, or is about to die. And so while my carefully crafted kick count strategy helps me get through the day in a marginally functional way, the marking of yet another day off the calendar continues to bring sweet relief.