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.


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.

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.

To the friend who stopped calling

To the friend who stopped calling,

We exchanged texts when my second son was born. You expressed your happiness for me. And then you went radio silent.

And your silence hurts.

My grief didn’t end the day Wyatt was born. Luke is still not here, and he never will be. I held him in my arms, but I will never get to see how his hair would grow out, or what color his eyes would be, never got to hear his voice, never got to do tummy time, never even got to dress him.

You listened to me in the days and weeks after Luke died. Expressed empathy when I detailed my countless anxieties. Shared advice for how to deal with the shitheads at my last job, and when I should quit.

And then I started to hear from you less and less. Perhaps I remind you of your worst fears, or maybe it’s a hard thing to keep up, providing support to someone who’s grieving, day after day, week after week. The thing is, it’s even harder to be the bereaved one. Every day that you wake up, you must confront the fact that your son is dead. There is no escaping it.

The last time I saw you, I was 28 weeks pregnant. We had our kids with us (well, you had all of your kids with you; I had only two of them), and it was hard to really talk. But I mentioned the anxiety I was experiencing over fetal movement. It was like talking into an abyss. There was no comprehension there. And in that moment I was reminded, once again, how much of a chasm now exists between myself and people who have never lost a child. Of how the relationships I had before Luke’s death are, in a sense, gone forever, irrevocably altered by the worst thing to ever happen to me.

I don’t know why I haven’t heard from you again. When you have a child after another child has died, it’s an emotionally tumultuous and confusing thing. You are grateful for your rainbow child. But you can’t help but think that he wouldn’t be there if your first son hadn’t died. Likewise, you can’t help but think that your rainbow is here only because your other child died. You feel guilty that one lived and the other didn’t, that perhaps if you had exercised the same level of care the first time around, Luke would have made it. And as your new baby boy grows and develops every day, it hits you viscerally, in a way it hasn’t up until now, what you have missed out on with Luke.

So no, my grief didn’t end the day Wyatt was born. In some ways, I need your friendship more than ever. But I guess this is time to accept the fact that we can’t go back again. We simply aren’t the same two people anymore, ever since that day, 20 long and short months ago.