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.

 

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Just feed the baby, they said

Warning: If you aren’t comfortable with boob talk or don’t want to read a bunch of detailed information about breastfeeding, feel free to skip this post.

In a recent post I mentioned that Wyatt is exclusively breastfed, and how I was proud of that achievement, since I never got there with Zoe and had to supplement with formula her entire first year. But it’s been a long road this time around, and we still have our struggles.

It started in the hospital when we learned that, like Zoe, Wyatt had both a tongue tie and a lip tie. (Ties are hereditary and my husband has a tongue tie.) I didn’t learn about Zoe’s ties until she was six months old, and so in the early days, when my milk supply was being established, she didn’t transfer enough milk, which killed my supply. I also had know idea what I was doing and didn’t seek help until it was much too late.

We were prepared with Wyatt and had his ties revised when he was 5 days old. But by then he was already using a nipple shield, because the lactation consultant at the hospital forced one on us, for reasons I don’t entirely remember, and because I was too doped up and exhausted at the time, I didn’t fight her. Anyway, soon he became too used to the nipple shield and wouldn’t nurse without it. In the meantime, he developed thrush, a fungal infection, and we spent several weeks sterilizing all bottle and pump parts after every feed and applying medicine to his cheeks and mouth four times a day, in addition to doing stretching exercises to helping his tie revisions heal.

Also for the first few weeks, he was incredibly sleepy and would fall asleep before he was full, so I had to pump after every feed and we would supplement with expressed milk, first in a feeding syringe, and then as he got bigger and ate more, with a bottle. He was so sleepy that it was often difficult to rouse him, or he would fall asleep halfway through, and feedings often took an hour. Apparently this is due to something called wimpy white boy syndrome, where, for example, premature white male babies require many more interventions in the NICU because they just can’t get it together. (My husband and I joke that this must be due to evolution, in that white males basically don’t even have to try, because they automatically get plenty of help, whereas African American baby girls, who are apparently the most robust in the NICU, have to fight for every little thing. Well, we joke about it, but sadly it’s probably true.)

Anyway, eventually we got past the sleepy phase and no longer had to wake him up for feeds, and eventually he got over the thrush. But then we were still using the nipple shield, which was preventing him from getting a full feeding, such that we still had to supplement with pumped milk. So I started to wean him from the shield, which took about a week, and for a few brief days things were great, as he was nursing without the shield and without supplement. But then without the shield serving as a barrier, nursing became excruciating, and this past weekend I had to switch to exclusive pumping and feeding him expressed milk with a bottle. We’ve since learned that he hasn’t learned how to use his tongue correctly after his revision and doesn’t bring it far enough forward in his mouth, and that’s why it’s so painful. We’re doing exercises several times a day, and hopefully I’ll soon be able to go back to directly nursing and we can put this last obstacle behind us.

A few days ago I said I wasn’t going to share a lot about Wyatt to protect his privacy, and yet here I’ve just gone and relayed a lot of medical information about him. But this is leading up to some tips I wanted to share with breastfeeding moms who are struggling, even though this is a grief blog, and not a baby care or breastfeeding blog. I didn’t know about any of this stuff when I was a first-time mom; I assumed you simply put the baby near the boob, and everything would just work out, so the amount of struggling we did hit me like a ton of bricks. Even this time around, I still had much to learn, so I hope it helps even one person out there. Pick none or one or all of these, if you like—whatever works for you.

Seek professional help. If you can only follow one of these tips,  let it be this: Schedule a home visit with an international board certified lactation consultant. A good IBCLC can not only assist you with latch issues but help you develop a feeding/pumping strategy, assess the suction on your pump, help you choose correct flange sizes for your pump, and recommend herbal supplements to boost supply if necessary. I’ve found that hospital LCs, while qualified, tend to be most knowledgeable about short-term goals of getting baby to have a sufficient number of wet and dirty diapers before leaving the hospital, as opposed to helping moms build a long-term milk supply. Likewise, LCs at pediatrician offices can be most concerned with making sure baby is gaining weight. And these are important goals, but if you are supplementing with formula because your bub isn’t efficient at transferring milk, and you feel that the hospital or pediatrician LCs are not sufficiently focused on helping you wean off supplementation, seek help ASAP from an IBCLC in private practice. You can find one here; the members of the IGT/Low Milk Supply Facebook group can also recommend one in your area.

While this is probably the single most important investment you can make on your breastfeeding journey, your insurance may not cover visits from a lactation consultant, so if you cannot afford one, consider asking friends and family for a bit of help—you can let them know you’d rather have this than more clothes, which you likely already have too many of anyway, or toys that the baby won’t even be able to use for months.

Invest in a hospital-grade pump. A hospital-grade pump is your single best bet for boosting supply, especially if LO is not good at transferring milk. You can rent one from your hospital, like a Medela Symphony or Ameda Platinum, or you can buy an affordable, high-quality one such as the Spectra S2. Under the Affordable Care Act, many insurance companies are even providing Spectras for free. With Zoe, I used an Ameda Purely Yours, then a Medela Pump in Style Advanced and eventually a rented Symphony from my hospital, as the Spectra wasn’t available in the U.S. at the time. This time I have the S2 and it blows the other pumps out of the water in terms of suction and comfort.

Have your LC test the suction on your pump using a vacuum gauge, and replace parts regularly. I’ve had to use my S2 frequently, so I replace the backflow protectors and duckbill valves about once a month. (Side note, the tubing that comes with the S2 sucks and constantly falls off the backflow protectors. I ordered the Nenesupply replacement tubing from Amazon and I no longer have that problem.)

Not every mom responds to every pump in the same way. Some moms actually respond better to hand expressing or manual pumps. So if you don’t have a lot of money to spend on multiple pumps, your best bet is to rent or to get a free one through insurance.

Pump after every feed the early weeks, especially if your LO has transfer issues.  Start as soon as you can in the hospital. This is a lot of work and can be time-consuming, and it can be especially challenging after your spouse goes back to work, and if you have more than one child, but you’ll figure it out eventually. Get a hands-free bra, consider hands-free pumps like Freemies, and learn how to pump while driving. If you have an older child, come up with special activities that they can do only when you are feeding/pumping. For Zoe, we created some craft boxes that we keep high on a shelf and bring down only during Wyatt’s feeding time.

Since breastfeeding is based on supply and demand, there is little that is more important in building your supply (in addition to using a pump with maximum extraction), especially if your LO doesn’t transfer enough. If you are supplementing with formula, pumping after every feed should eventually help build your supply to the point that you can start supplementing exclusively with breast milk.

Learn about herbal supplements. Fenugreek is usually the go-to supplement recommended for boosting supply, but for many moms it has no effect or, for those with thyroid issues, can actually decrease supply. There are other options, such as goat’s rue and moringay, and this is where an IBCLC in private practice can really help, as many hospital and pediatric LCs seem to be f fenugreek.

Enlist helpers. If you have a spouse or partner, now is the time to enlist as much of their help as you can. Up to this point they haven’t born the brunt of bearing your child. They weren’t pregnant, didn’t deliver the baby, and aren’t nourishing your LO directly from their body. So don’t feel bad about asking them to pitch in by washing pump parts, bringing you snacks, getting up with you for middle of the night feeds, or any of a thousand tasks.

Don’t stress, and don’t give up. “Don’t stress” may seem laugh-out-loud crazy, and I certainly am guilty of not following this advice, but seriously, make a plan, push through the hard parts, and try to trust that everything will eventually work out if you stick to the plan. Find a mantra that you can recite any time things get hard—this one has worked for me:

 

Find other moms that you can connect with for advice and inspiration. I’ve gotten so many great tips on pumping from the Exclusive Pumping Mums Facebook group, and it also helps to know I’m not the only one who struggles.

If you’re having a bad moment and feel like giving up, see if you can postpone your decision to the next morning. You may find that with a little distance from whatever it was that was pushing you to the edge, you feel just better enough to keep going for a little bit longer. If you keep doing this, things may start to get easier until the woes of the early days are far behind you. Remember that with very young babies who are just figuring all this out, every feeding is different, so if you have a feeding where baby doesn’t latch or doesn’t transfer enough milk or it’s excruciating, try to push through it and forget about it as soon as it’s over, because the next feeding may very well go better.

But if you feel like you’re not enjoying your time with your baby, or that feeding and pumping are taking too much time away from your baby, or that you just want your body back and to get some sleep, there’s no shame in stopping. You can bond with your baby and be a great mom however you choose to feed. It’s your body and only you can decide how you want to nourish your child.

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Five days

Our induction is scheduled for Thursday, March 9. We have five days to go. I have spent the entire pregnancy not knowing whether we would make it this far. Now that we have, I find that the huge burden of responsibility for another’s life still has not been lifted from my shoulders, even though I am seeing one doctor or another three times a week. Monitoring of fetal movement still rules my life, and my brain. And in that regard five days seems an eternity away.

And also, the end of this pregnancy is bittersweet. This is my last pregnancy. Feeling their babies move is what many mothers cite as their favorite part of pregnancy. And it has been mine as well, and there are definitely times that I savor the movement, but I hate that it has also become such a source of fear and anxiety, something that most moms in “normal” pregnancies, oblivious to the fragility of life, will never experience. Just one more hard fact on this planet where my baby died.

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.

My treatment plan

I’ve been pretty neglectful of this blog, but I wanted to share some details of the treatment plan for my current pregnancy, particularly for other sufferers of MPFD/MFI/VUE/CHI who may come across these writings.

As a refresher, the issue in Luke’s pregnancy was a condition known variously as massive perivillous fibrin deposition, maternal floor infarction, chronic hystiocitic intervillositis, and villitis of unknown etiology. Essentially, for some reason my immune system was able to recognize his placenta where normally it would be “invisible.” His placenta was also expressing something incompatible to my immune system, which consequently attacked the spaces in between the villi, the fingerlike projections of the placenta that are responsible for keeping blood flowing in the placenta. (In cases of villitis, the immune system attacks the villi themselves, but in my case immune cells were found between the villi, hence the intervillositis diagnosis.) As a result, massive clots built up in the placenta (AKA massive perivillous fibrin deposition) and by the time Luke was born, the placenta was in the 0.01 percentile, meaning it was smaller than 99.99 placentas of the same gestational age.

MPFD et al. is characterized in medical journals as incredibly rare and poorly understood. It’s not understood why the placenta isn’t being kept invisible or what genetic factors make the placenta and immune system incompatible—i.e., a simple blood test from Mom & Dad & baby won’t predict whether the doomed combination is present (the placenta comes from paternal DNA, and interestingly, there is a significant history of stillbirth on my husband’s side of the family, for which we don’t know if there is any association). MPFD is said to have a high chance of recurrence (I’ve seen as high as 67 percent), but in truth the condition is so little studied that the actual percentage of recurrence is basically unknown. I belong to a couple of different support groups for MPFD and I’ve met women who’ve lost multiple pregnancies to the condition, including miscarriages, women who’ve had only one loss (often sandwiched in between successful pregnancies), and everywhere in between. There has been some development of a therapy that would suppress the immune system response, but it’s not really available in the U.S., and while it has shown good early results, there hasn’t been enough research to validate it as the treatment of choice. As a result, most of the treatment focuses on treating the clotting that could arise from an immune system response, although some women opt to go on no treatment at all, since the clotting treatments haven’t always proven successful either.

In my case, I found out through testing after Luke’s death that I have a common copy of a mutation in the MTHFR gene, which aids in clotting prevention. Something like 75 percent of the population has this mutation. But given the MPFD diagnosis and this additional information, I decided with my doctors and Dr. Harvey Kliman, a placental pathologist at Yale, to begin taking baby aspirin (81 mg daily) as soon as I had a positive pregnancy test. At around 10 weeks I began seeing a maternal fetal medicine specialist, who also prescribed a prenatal containing folate, as well as additional folate, since those with the MTHFR mutation are unable to properly process folic acid, which is contained in most “regular” prenatal vitamins.

I also had clotting tests redone at around 10 weeks, since some clotting disorders can arise only during pregnancy, and was indeed found to have a deficiency in the Protein S clotting factor. Thus I began a daily self injection of enoxaparin, the generic version of Lovenox, a blood thinner similar to heparin. I started at a dose of 40 mg/ml and was retested periodically to make sure the levels were still high enough in my blood, since enoxaparin is a weight-based medication. At 29 weeks, I indeed had to increase the dose to 60 mg/ml. At 33 weeks, I was retested and remained on the 60 mg/ml dose. I will come off the enoxaparin 24 hours before scheduled induction at 37 weeks, and then I’ll need to go back on it for about a month after delivery so that I myself do not develop clots.

For monitoring, I did a bunch of genetic testing at around 11 weeks (through which we learned the gender), the first growth scan at 18 weeks, and an ultrasound every 3 weeks thereafter until about 24 weeks, at which point I switched to biweekly scans. At 28 weeks we began monitoring blood flow to the baby by measuring Dopplers, and we also began biophysical profiles. All of the scans are done at the MFM’s office, since they have much more powerful machines than my regular OB’s. At 32 weeks I also started weekly nonstress tests at my doctor’s. At 34 weeks the BPPs will increase to twice a week.

I started regular kick counts at 24-25 weeks, earlier than what is medically recommended, but what I needed to do for my own sanity. I’ll write more about that in future posts—I have a lot to say on the matter. Since 28 weeks I have been to the labor and delivery unit at the hospital five times for concerns over possible decrease in fetal movement. So far, each time, we’ve passed the NST and BPP with no problems and checked out within two hours.

Although the baby’s growth, Dopplers, NSTs, and BPPs have all come out looking great at every scan, we still have no way of knowing whether the placenta will start to fail in the last few weeks. We have a lot of information on this pregnancy, but we don’t have the information from Luke’s pregnancy to compare it with, since he was on the routine monitoring for “low-risk” pregnancies, which included a mere two ultrasounds and regular measurements of fundal height and heart rate. Luke’s last ultrasound was at 32 weeks and everything appeared fine, and while we can never be sure whether his condition was present from the very beginning of his pregnancy and may have been detected with more intense monitoring, we do know something went catastrophically wrong between 32 and 37 weeks.

Consequently, at the advice of my MFM, just before 33 weeks, I had two doses of steroids (betamethasone, AKA CElestone) to aid in the baby’s lung maturity should I need to deliver before 37 weeks. Unfortunately, one of the possible side effects is decreased fetal movement, which I did indeed experience, triggering a hefty amount of PTSD and sending me on a late-night trip to L&D within eight hours of receiving the second shot. He performed beautifully on his NST and BPP and I was sent home to monitor movements and see if they picked back up, which thankfully they did.

To sum up, my treatment plan consists of:

• Baby aspirin, 81 mg daily, taken at night (stopping at 36 weeks)
• Self-administered injection of enoxaparin, 60 mg/ml, once daily (stopping 24 hours prior to delivery and resuming 24 hours after delivery, for one month)
• Vitamed MD (prenatal with folate)
• Metanx (extra folate), 1 pill twice daily
• Other supplements (DHA, Vitamin D, probiotics)
• 2 rounds of steroid (betamethasone/Celestone) administered 24 hours apart to aid in lung maturity in case of delivery before 37 weeks
• Regular growth scans, increasing to twice weekly at 24 weeks (at my insistence)
• Biweekly Doppler measurements and BPPs at 28 weeks (in addition to growth scans)
• Weekly NSTs at 32 weeks
• Twice-weekly BPPs and Doppler measurements at 34 weeks
• Intense monitoring of fetal movement (AKA kick counts all day, every day)
• Acupuncture and psychotherapy

I wish I could say something sarcastic or witty or wry at some point here, but the truth is that all of this has been as overwhelming and daunting as it sounds, and I’m basically spent at this point. Which is why, when people ask me how I am feeling, I wish they would ask me how I am doing, because, while it seems trivial, that phrasing acknowledges an understanding on the part of the questioner that this is no normal pregnancy in which physical discomfort is the biggest complaint, and that crippling fear and anxiety are the main beasts, to be wrestled daily. So there you have it.

Hiatus

I haven’t written a word for this blog in months, largely because I’ve been so busy with school that I haven’t had a lot of time to stop and think. Over the summer I enrolled in two back-to-back intense undergraduate classes, first in chemistry and then in biology. The classes were three to four hours long, every day, and I would then come home and spend the rest of the afternoon doing the readings and homework.

I then started grad school in late August. I enrolled in two classes, by far the most intense I have ever taken. Every week I read hundreds of pages of the textbooks and scientific papers. I also read three books, gave four presentations, wrote an 8-page research paper in addition to five shorter essays, and took four exams. In addition, I spent the fall completing master naturalist training through the state of Maryland. For 12 weeks every Monday, I took 6.5 hours of training at a local nature center on topics ranging from tree identification, mammals, and reptiles and amphibians to interpretation, stream ecology, and humans’ effect on the environment. I’ll be an intern for the next year and then graduate to certified master naturalist, putting my training to use volunteering at the nature center and working on local environmental issues.

So there’s all that, but truth be told, there’s another reason I haven’t been writing on this blog. In July I found out I was pregnant again, and I’ve honestly been afraid to write about it, or even to tell many people, for fear of jinxing it. I’m a rational, scientific-minded person and I know it’s ridiculous to believe in jinxes. But just like those commercials from the 80s (or was it the 90s?), this is your brain on pregnancy loss. Scrambled and fried with heaping helpings of paranoia, fear, and anxiety.

I’m currently 27 weeks and 1 day, and it’s another baby boy. I’ll write more in a future post about how the pregnancy has been going (in a nutshell, fine, with the exception of my mental state). In the meantime I’ve been jotting down a few of the things that have happened over the last several months and wanted to share them here.

When we found out about our miscarriage in April, the OB who delivered the news was not unsympathetic, but she was also very matter of fact. And the office seemed to immediately kick into a precisely programmed, finely tuned sequence of paperwork and scheduling and instructions. It wasn’t that they didn’t care at all, but everything just seemed so … routine. And miscarriages are way more common than stillbirth, so that’s understandable to some degree, but miscarriages are still a big deal when they are happening to you. And it doesn’t excuse insensitive behavior. At the hospital, the anesthesiologist commented on our private room, as if we had scored some sort of sweet deal. Then he remarked on how nice the weather was and that he couldn’t wait to get home so he could go outside. This was right after the nurse had forced me to state that the reason I was in the hospital was for a D&C following a “missed abortion.”

In the weeks to follow, we received far fewer cards, phone calls, and messages of support from family and friends than we did following Luke’s death. If there’s one thing I’ve noticed since joining this sad club of women who have lost babies, it’s that people seem to have far less empathy for those who’ve had miscarriages. Apparently it’s much easier to empathize with someone who’s had bad luck versus bad DNA.

With this pregnancy, I was at the dentist a few months ago and after I told them I was pregnant, the inevitable question came up of how many children I have. Since it’s a medical office I felt I had to give full disclosure, so I stated that my daughter is 3 and my son was stillborn at 37 weeks. This was the first time I had seen this dentist, and right away I didn’t much care for him anyway. He had perfect hair and seemed like just another 40-something, white male toolbag. This impression was confirmed by his response to my disclosure, in which he, without missing a beat, replied, “Aww, that’s too bad,” and then in the next breath, “I’m sure she’ll love the baby. My kids are 5 and 2 and they’re best friends.” Shut up, asshole. Take your perfectly spaced kids and go f yourself. My daughter can’t be best friends with my firstborn son. Because he’s dead.

When I was interviewing to get into the aforementioned master naturalist training, one of the questions was to describe a time where something didn’t go as expected and how I handled it. All I could think was, “Well, I was pregnant, and the pregnancy had supposedly been going fine, and I was three weeks away from my due date, and then my baby died. How did I handle it? I spent the next year-plus consumed by grief and anger and anxiety. So, I guess I handled it pretty shittily.” I can’t remember what answer I gave instead.

On a related note, I was eating lunch with some of the other students in the training program one day when this annoyingly self-absorbed 20-year-old decided to embark on an elaborate retelling of how he was once called to substitute in an intramural college soccer game and had to dash across campus to catch the bus. He attends Cornell and, in true Andy Bernard fashion, is always reminding us of that fact, and as he told the story I got the sense that this close call with the stupid soccer bus just might have been the most dramatic thing that has ever happened to him. There was more than one person at the table, so I was able to sneak away without being rude, stuffing down the urge to mutter, “Man, that’s soooo rough. There was this one time I had to check into the hospital to deliver a dead baby. That tooootally sucked.”

Luke’s first birthday in August fell on a Sunday. We visited him at the cemetery and added a few items to his box. We brought cupcakes, mostly for Zoe’s sake, and read a few books. Because I’ve lived and breathed his loss every day since he died, it honestly didn’t feel that much different than every other day. It just felt like a pathetic little commemoration, and I wish we could have done more to honor him.

More than a year after Luke’s loss, most of the people in our lives have moved on. Only a few hardcore carers still ask us how we are doing. Hardly anyone included his name on Christmas cards, which were full of cheery messages that failed to acknowledge how shitty and sad we might be feeling given the huge hole in our family where a 1-year-old boy should be.

After a year of needling our hospital to acquire a Cuddle Cot so families experiencing perinatal loss can spend more time with their babies, the hospital finally installed one. They ended up paying for it so we didn’t have to conduct any fundraisers, which was great on the one hand, but on the other hand, the other loss moms and I who’d been working on this weren’t really able to participate much in the endeavor in a way that would have allowed us to commemorate our children. The hospital didn’t even coordinate the cot into their annual perinatal loss ceremony for Pregnancy and Infant Loss Awareness Month—at which they released balloons, which I hate, and despite my asking them not to, so I didn’t/couldn’t even attend. Maybe next year I’ll organize a ceremony of my own.

We recently attended a birthday party for one of Zoe’s classmates. It was at one of those indoor bouncehouses where the kids run around like maniacs for an hour or two, then retreat to the party room and eventually collapse into a sugar coma. In the waiting area before we went back to one of the rooms, an old codger walked up to Zoe and one of her little friends. I think he thought they were sisters or something. But for some reason he asked Zoe, “And where’s your brother?” Zoe didn’t know how to respond, and in my mind, I told him, “In the f’in ground. Now shut the f up and go away.” Why do so many old people lack filters and common sense?

Until next time …

Gone too soon, part two

 

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain. —Bene Gesserit litany against fear, Dune

I had three ultrasounds in this most recent pregnancy, at eight weeks, nine weeks, and 10 weeks. In my car, driving to each one, I recited the above passage from Frank Herbert’s classic 1960s sci-fi novel. And then, I would visualize myself sitting in the ultrasound room, tensely waiting for the doctor to speak as she searched and searched on the monitor. In my visualization, eventually she would turn to me and say the dreaded words, “I’m sorry; there’s no heartbeat.”

Each time in the car, and a couple of times between appointments, I forced myself to let this visualization play out, to imagine the shock and despair that would follow, to feel the world reeling again after the loss of another baby, the life draining out of me. And surprisingly, just like the litany says, this calmed my fear every time. Somehow, letting the moment unfold in my mind allowed me to feel a degree of control over the situation that quelled what would otherwise have been paralyzing anxiety.

Nonetheless, I was relieved when, at the first appointment, there was a heartbeat, though I wouldn’t say I was happy. And it was a strong heartbeat, at 162. The dating was a little off and the pregnancy was a few days younger than it should have been—7 weeks, 5 days, instead of 8 weeks, 3 days—but my OB did not seem concerned.

A week later was my first appointment at the MFM. I visualized the same no-heartbeat scenario, but again there was a heartbeat, even stronger this time, at 174. The dating was still off, but the MFM, Dr. H., did not seem concerned either. She also hooked me up with a new prenatal vitamin and extra folate to address my MTHFR mutation (inability to completely process folic acid to folate, needed to prevent blood clotting).

On Monday, April 25, my visualization came to pass. The day before, I had noticed a very small amount of spotting. It was so small that I was not overly concerned and decided to just monitor it; many women experience spotting with no harm to their pregnancies. Monday morning, there was again a small amount of spotting, so I called the OB and asked to come in to be checked, as spotting wasn’t something I had experienced with my other children.

Zack wasn’t with me when I found out Luke had died, so this time I waited in the OB’s parking lot for him to make the hourlong drive from his work. As I waited, for the third time, I went through the visualization exercise.

Inside, after what seemed an interminable wait, we made it back to the ultrasound room. When I finally got on the table and the OB (not my usual doctor) started the scan, there was a long pause while she searched and searched. It was then that I knew my worst fears had been realized, because it shouldn’t have taken her that long to see anything. And indeed, when she finally did speak, it was to say that she had brought up the color flow on the monitor and could only see my heartbeat. (Oddly, she chose to say that “the pregnancy had stopped growing,” which confused me enough that a few minutes later I had to confirm with her that the baby was dead.)

We were shuttled to the ultrasound specialists across the street to confirm the loss. The pregnancy, which should have been 10 weeks, 3 days, was dated at 9 weeks, 2 days. We then proceeded to the hospital outpatient wing for the D&C. What followed was a lot of waiting. We sat in the hospital waiting room for almost an hour, and the preop room for another hour.

Eventually, nurses came to draw blood, fill out paperwork, and start an IV. I was asked several of the same questions multiple times by different people—including why I was there, which felt like rubbing salt in the wound but apparently was just an effort to make sure I was consenting to the procedure. One of the times, I couldn’t get the words out, so the nurse answered for me, “For a missed abortion.” Ouch. (Side note: Women with a history of miscarriages are referred to clinically as “habitual aborters.”) I then had to wait another hour before being wheeled to the operating room, where the last thing I remember was an oxygen mask being lowered onto my face.

Coming out of anesthesia, it seems, is a bit like being drunk. Apparently I asked the doctor when I could exercise again, a question of which I have no memory. I remember at one point wailing, “My baby died” and “He was 37 weeks.” I must have asked one of the nurses if she had children, because I remember telling her, “Then I want you to know that you should appreciate what you have.” All of this took place with my eyes closed, and the people seemed very far away. At one point, someone announced that I was in the recovery room. Eventually the voices faded, and there was only one nurse remaining. I remember asking her, “Does anyone care about my loss?” To which she answered, “We all do.” Later she came to my side, grasped my arm, and said, “I want to tell you that I know how you feel.” I don’t remember what she said after that.

Today, 15 days later, I am still processing what happened. I’m all griefed out, and I don’t have any more space in my heart for the grief to come in and swallow me whole again. So, it comes in drips and drabs. I’m finishing up the spring semester and preparing for the first of two summer sessions to start in three weeks. I’m dusting off my resume and planning to secure some freelance editing work. I’m attending a climate change protest in D.C. I’m canning chickpeas and hoping to pick strawberries soon to can preserves. I’m watching Ken Burns’ miniseries on the national parks. And, here and there, I cry. In the car. In the middle of zumba. At Target, when I see the mom with her toddler and her newborn. When I see the pregnant lady who, frankly, looks like she has no business being pregnant. When people say, I’m here for you if I need it, but then never bother to actually reach out and just ask, How are you doing?

I never, ever, in a million years, thought this would be my life, especially after having Zoe at almost 40 weeks following a pregnancy with zero complications. But it is my life. So I’m slowly, against my will, figuring out how to live it.

One backwards day at a time

So, about a week ago, this happened.

Yeah.

For baby loss moms, pregnancy announcements are a tricky thing. You see the happy couple, the gush of congratulations, and they seem so smug. You envy that sense of innocence and invincibility. You want to shake them, to shout, Just because you’re 3 months along doesn’t mean you’re safe! Don’t you know your baby can die at 26 weeks? At 37 weeks? At 39 weeks 6 days? During labor? Right after they’re born? It’s not a sure thing! WHY ARE YOU SMILING???

But you keep your mouth shut and don’t say any of that because, you know—asshole. Plus you then remember, oh yeah, it’s perfectly normal to be happy about a pregnancy. In fact, there was a time when YOU yourself were. And most babies are born perfectly normal and healthy, including yourself and your daughter.

So instead, as the expecting couple heads into the third trimester, you gingerly, or not so gingerly depending on the relationship, approach them with some information about kick counts. Your doctor’s office will never tell you this, and ever since Luke’s death I feel like it’s my obligation to let pregnant women know …

It’s even harder when the pregnancy is your own. You look down at your BFP and instead of throwing up your arms and shouting with joy, you feel like you want to throw up the contents of your stomach (and “morning” sickness hasn’t even kicked in yet). The enormity of it rushes at you, all the ultrasounds, the BPPs, the NSTs, the kick monitoring, the trips to L&D, everything that will be needed to hopefully, mercifully, bring a baby into this world alive. After those have passed by in your mind’s eye, the unknowns start their parade. All the this could happen, that could happen scenarios that could possibly manifest in the mind of a mother marooned on Planet I Delivered a Dead Baby.

But 40 weeks is a long time, even longer when every single moment is wrapped up in anxiety and fear over things that 99 percent of the time you have no control over anyway. So I’ve come up with a strategy for pounding those stupid, insidious unknowns back into the miserable holes they popped up out of.

It came to me one day recently as I pulled the recycling can up our long, steep driveway. (This is a driveway that’s so long and so steep that even after only carrying up the paper, you’re out of breath and your ass is sore.) Partway up, I decided to turn around so that I was facing the recycling can and the street, with my back to the house. I continued to pull the can, but from the opposite direction—walking backward.

This simple change made the walk a little less physically strenuous and a lot less mentally so. Instead of seeing how far I still had to walk up the driveway, I was seeing only all the milestones I had already passed—the portion where the driveway gets even steeper, the neglected flower box erected by some long-ago owner, the brush pile we built after an autum storm. And just like that, I was at the top of the driveway. Focusing on what I’d already accomplished made the walk seem to go much more quickly.

Contemplating this suddenly reminded me of a frequent dream of mine in which I’m running away from someone or something that’s chasing me, only it’s like I’m slogging through invisible thigh-high mud and I can make barely any progress, mustering all that I have to inch forward with each step. For some reason, every single time in the dream I decide to turn around and walk backward, and suddenly it’s like I’m walking on air. I speed away from my pursuer and wake up.

As I stood on the driveway and pondered this sudden memory, it occurred to me that’s how I should approach a subsequent pregnancy: by walking backward through it. Instead of focusing on the milestones and appointments ahead, I’m only going to focus on those that have already passed. For right now, that means the positive pregnancy test, and not whether I should get a home Doppler or what the nuchal translucency test will reveal or how to give myself heparin injections should that become necessary.

So far, I’ve found that it’s a bit like meditating. You have to pay attention so that you notice when your mind starts to wander. Then you snap it back to where it’s supposed to be.

This is my strategy for now, anyway. I discovered it in a dream I’ve had for many, many years, the meaning of which as always eluded me. I don’t know how or why it got lodged in my brain, but at this point, it doesn’t matter. I’ll take it.