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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.