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.

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 …

Rise up

You’re broken down and tired
Of living life on a merry-go-round
And you can’t find the fighter
But I see it in you so we gonna walk it out
And move mountains
We gonna walk it out
And move mountains

And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
And I’ll rise up
High like the waves
I’ll rise up
In spite of the ache
I’ll rise up
And I’ll do it a thousand times again
For you [4x]

When the silence isn’t quiet
And it feels like it’s getting hard to breathe
And I know you feel like dying
But I promise we’ll take the world to its feet
And move mountains
Bring it to its feet
And move mountains
And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
For you [4x]

All we need, all we need is hope
And for that we have each other
And for that we have each other
We will rise
We will rise
We’ll rise, oh oh
We’ll rise

I’ll rise up
Rise like the day
I’ll rise up
In spite of the ache
I will rise a thousand times again
And we’ll rise up
High like the waves
We’ll rise up
In spite of the ache
We’ll rise up
And we’ll do it a thousand times again
For you oh oh oh oh oh [3x]

—Andra Day

Now we lay them down to sleep

Although we we enter Luke’s room every day to read Zoe bedtime stories, since the rocking chair is located there, in many ways it’s a museum, largely untouched since he died, frozen in almost exactly the same state it was in the days and weeks before our world changed forever.

His name still hangs on the door, essentially the way I drew it and the accompanying graphics in the week or so before his death, though I’d left the space for his middle name blank; Zack and I wouldn’t decide on that until we were at the hospital. (I also obviously added the quotes about stillbirth later.) Meanwhile, to this day, the board containing our goals for the week broadcasts a to-do list for parents who thought they were about to have a living child: Finish hanging things in the nursery, pack the suitcase with the going-home outfit for the baby, get the breast pumps together.

We’d added decals to the walls and space images from an old calendar to his closet doors. An “It’s a boy!” balloon from a baby shower (now deflated) hung on the closet to welcome his arrival.

We assembled the crib, which later became a dumping ground for all the boxes and detritus I simply don’t have the energy or desire to do anything with. It also holds the blanket we wrapped him in at the hospital, colored with precious drops of his blood.

We dragged up the baby swing from the basement. My mom had sent all the clothes Luke would need for the first six months of his life. I’d washed, folded, and sorted them all, and set aside extras.

While I’ve been able to look at the rest of the things, the clothes for me were the most heartbreaking. Partly because they mostly came from my mom, and signified her love for her yet-to-be-born grandson, but also because dressing a newborn baby is one of the few ways you have to build a bond in those early days of nonstop feeding, crying, and diaper changes. The clothes represented a connection I would never have with Luke, especially since I didn’t even think to take any of them to the hospital. He was naked and bare beneath his blankets, and I never got the chance to even once dress him.

So in the past nine months, I haven’t been able to bring myself to even open the drawers. That changed recently when a fellow baby loss mom, Joan, started collecting pajamas to donate to bereaved parents and their children at her local hospital in Maine. I feel a special connection to Joan because her daughter, Maeve, was lost late in her pregnancy to villitis of unknown etiology, a very similar condition to Luke’s in which Joan’s immune system attacked the placenta, resulting in large, fatal clots.

So today, for the first time, I was able to look through all of the clothes and pick out a few to send to Joan. While I did shed tears, I also felt light come into my heart knowing the purpose for which the clothes will be used.

Here is the text of the notes I included (I also enclosed the lyrics to Pink’s “Beam Me Up”):

To my friends in grief,
     How I wish that you did not have to be opening this card, but I hope that this sleep set brings you a small measure of comfort, knowing the love and intention with which it was carefully packed. It would have been one of my son’s first pair of pajamas—a gift from his doting grandma—but he was born still on Aug. 21, 2015, just three weeks shy of his due date, following a seemingly normal pregnancy. It has been crushing for me these past nine months to look at his clothes and know that he will never wear them. But it brings light to my heart knowing that this sleep set will be used to protect and warm one of his fellow angels. It is my greatest dream and desire that, wherever they are now, they have found each other and are playing together with much love and happiness somewhere on the other side of the rainbow.
     You are likely still in shock from your loss, and a part of you will always be. This sorrow will change you forever. You will never be able to live in or view this world in the same way again. The despair, anger, and regret at times will seem Iike they could swallow you whole. But I am here to tell you that although you will never be done grieving and this wound will always remain, it is possible to find a way forward, and times of laughter and happiness will come again. And you will find a way to still be a parent to your child, by incorporating them into a special place in your family life. You will always, always hold your precious baby in your heart, and nothing can ever change that.
      I am wishing you moments of light and love, and I am here for you any time you need it.

 

I don’t know if I will ever be able to use the clothes to someday dress a living baby. In the meantime, I have plans for a few more of them. And I plan to leave the nursery the way it is, at least for now. Although it’s a painful monument to our now-destroyed innocence, it also one of the few things that connects me to Luke. And that I’ll hold onto for as long as I can.

P.S. If you would like to participate in Joan’s pajama project, email me at lukesmom0821@gmail.com and I’ll hook you up.

Ray of hope

I’ll write a more detailed post when I have some time, but our visit to Yale on Tuesday yielded unexpected hope and cleared away much confusion. Dr. Kliman clarified the diagnosis as massive perivillous fibrin deposition, not maternal floor infarction, related to inflammation (intervillositis) of the placenta’s intervillous space, caused by invading white blood cells from my immune system. In maternal floor infarction, the fibrin, or clotting material, is limited to the area of the placenta closest to the mother’s side. In my case, fibrin built up throughout the intervillous space, obliterating it.

For some reason not clearly understood by science, in cases like mine the placenta fails its job of keeping the baby “invisible” so that the mother’s immune system doesn’t attack it, as any mother’s would otherwise do. Dr. Kliman felt the condition was present from the beginning of the pregnancy and not one that developed toward the end, as I had previously written. He also doesn’t believe an autoimmune disorder was involved and thinks it was a response to Luke’s particular genetic makeup—which helps explain my prior uncomplicated, full-term pregnancy.

Dr. Kliman had hope for a subsequent pregnancy as Luke fared well and strong under the circumstances despite a small and failing placenta, as evidenced by his weight, his survival to 37 weeks, and the fact that he even tried to make some of his own red blood cells. We discussed treatment and monitoring methods and his research, and for the first time in a long time I felt I had met a medical professional who truly cares and is trying to make a difference.