Category Archives: pregnancy

Where I’ve Been

Posted in babies, genetics, new baby, pregnancy by

I haven’t been around the blogosphere for several months now, but I promise I have a good reason for it! After the Capture Your Grief challenge, I found that I needed a little blogging break. Meditating on grief every day is a really emotionally trying exercise. Then, I got some news that made blogging in general…complicated.

I’m going to put a *TRIGGER* warning for other loss moms reading because I think I would want one. I’m about to write about a new pregnancy and a new baby.

 

 

 

 

 

 

 

So if that’s not a spoiler, I don’t know what is. Zach and I are expecting a new baby boy in August 2015! We are thrilled (!!!), but the first few months were quite full of fear. As I’ve written in the past, becoming pregnant poses a substantial risk of more loss. There was no way for us to tell until about 12-13 weeks how this pregnancy was going to turn out. Of course, even now at 16 weeks pregnant, there are no guarantees. We are very hopeful for this baby, but we are no strangers to loss. We were fortunate that we know the genetic mutations that Owen inherited from us, so we were able to test for them very early on. I underwent chorionic villus sampling (CVS) at 11 weeks so we could look for those mutations in this baby. While we waited for results, we had two very promising ultrasounds showing normal length long bones and hands with only 5 digits each. Since Owen’s long bones and hands were pretty clearly atypical early on, that gave us some relief. We got our final results at 13.5 weeks which told us this baby is free of EvC! He is a carrier, like us, which should not affect him in any way.

I had (have) a lot of conflicting feelings about pregnancy the second time around, but I think that is another post for another day. In the meantime, here’s our new little nugget:

 

baby

 

 

 

Day Twenty One: Relationship

Posted in babies, babyloss, pregnancy, recovery by

Owen's poem

One of my midwives wrote this just a few hours after she delivered Owen. She brought it to us, along with flowers and postpartum supplies for me, the day after we got home from the hospital. When I saw the date, I realized she had gone home from a very long, emotionally difficult shift with me (I think 24 hours?) and devoted even more time to our grieving family by writing a poem to my son. It is one of the most beautiful things anyone has ever done for me. I’m not sure she realizes it, but by putting this on paper, she also helped me to have a reminder of Owen’s most special moments–I had no idea Owen reached for me as I reached for him, for instance.

There aren’t many people in my life who had a tangible relationship with Owen. Many people know him through Zach and I, of course, and experienced his life before birth, but relatively few people ever met him. It’s pretty much just me, Zach, Anika, our parents, and some very close friends. We had a few nurses who I know were impacted by us, and I know they remember Owen, which means so much to me. There’s something special to me about knowing that Anika loved Owen and saw how special he was. I am so glad that the first hands that held him belonged to someone who could appreciate his beautiful, short life.

I’m  thankful for the relationships I’ve formed with my midwives through my pregnancy and Owen’s life and death. Babyloss isn’t easy, but it is surely more bearable when there are other women there to support you. I am even more thankful for the relationship my midwives formed with my son. They protected our time with him and helped to honor his life, no matter how brief it was.

Day Thirteen: Season

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Owen snow

The spring brings Owen’s birth and death to mind, but I associate fall and winter with him the most. When we went into the hospital, the weather was still cool and showing no signs of spring. When we left the hospital without Owen, it was beautiful, sunny, and warm. I told Zach on the way home that it felt like Owen had brought the spring to us.

I suppose that also means to took the winter with him. Chill reminds me of Owen’s life with us: bundling myself up and not being able to find a coat to cover my belly as fall turned to winter, traipsing all over for appointments with specialists on icy roads, hibernating with him during our January snowstorm.

We took a beach trip when I was 14 weeks pregnant to celebrate the last bit of warmth. Two weeks later, fall had fully hit with changing leaves and cooler temperatures, and we were being told that Owen (who we had just recently named and felt move) was going to die. Winter came, and we got good news. Owen might live. Winter is the only hopeful time I got to experience with Owen. It’s the only season we spent planning for his life rather than his death. I wrote his name in the snow during the snowstorm so that if he lived, I could show him that we had been loving him and planning for him since before he was born, that he was a part of our family even before birth.

Day Eight: Resource

Posted in babyloss, Ellis van Creveld, pregnancy, recovery by

When we first got Owen’s semi-lethal or definitely lethal diagnosis and made the decision to carry him, I turned to the internet right away. Surely, there has to be people who have done this before, I thought. I found a ton of blogs, which were a huge help, but I wanted to talk to people who were doing this now. I found a handful of online message boards for women who were/are carrying babies to term with very poor or fatal prenatal diagnoses. What a port in the storm that was. I had felt so alone, wondering why were facing this unimaginable pain, and here were people who would be doing it with me. I hated that any of us had to be there, but I was so glad for the company.

Since Owen’s prognosis was unclear, I also sought support from groups dedicated to diagnoses of dwarfism and even found a specific website for parents of EVC babies. Hearing the stories of other parents who had received tentative diagnoses gave me hope. Some of the children had not lived very long, but knowing that we weren’t facing a 100% lethal diagnosis was comforting. The EVC group was especially useful since I was able to reach out to some of the parents and discuss prenatal findings and treatment options. I also received the contact information for Dr. Philippe Jeanty, a specialist in prenatal diagnosis who had seen cases of EVC (lots of doctors, even experienced specialists, haven’t seen EVC before). He reviewed our scans and consulted with our perinatologist to verify that Owen likely had Ellis van Creveld syndrome.

After Owen’s death, I continued on in the Carrying to Term board and joined a private support group for women whose babies have died. I started this blog and linked up with other bereaved moms (you can find them on the right). I stumbled upon Glow in the Woods and Still Standing Magazine one day and breathed a sigh of relief because I had finally found others who were giving voice to this pain with such eloquence.

It was(is) a hard journey, but I was never alone. I certainly felt alone and lost at points, which I think is inevitable, but I never felt at a lack of information. I think it’s unavoidable that there will be lonely times when carrying a very sick, possibly terminally ill, baby. No matter the amount of resources or support, no one else is carrying your baby or making life and death decisions for him, but it is overwhelmingly comforting just to be accompanied on the journey.

(no photo today–again! sorry!)

Day One: Sunrise

Posted in babyloss, pregnancy, recovery by
sunrise

“The sun reached out his hand to me and touched my face. And so my healing began.” –Marjorie Pizer

October is Pregnancy and Infant Loss Awareness Month. I was vaguely aware of this prior to losing Owen since I worked in a NICU and talked to a handful of moms there who participated in various events. Now it’s my turn, I guess. I’ve decided to participate in the CarlyMarie Capture Your Grief Photo Challenge.  Hopefully I’ll be able to keep up. I’m already behind by one day, so let’s just pretend I posted this yesterday!

My sunrise photo isn’t quite sunrise. I took it at my clinic after being at work for about an hour, but it’s a wonderful image of the sun coming through a really beautiful tree outside of my window so I’m going with it. Plus, I’m not a get up at sunrise kind of girl.

Sunrise is a time that is dear to me though. When Owen was dying, we were wheeled out of the the NICU (he was in my arms) and into a Labor & Delivery room with a wonderful view outside. The sun was rising over the hospital, and I was so happy that Owen got to experience sunlight. I haven’t been up at sunrise since that time. For the first month after he died, I would set my alarm for 3:08 am (the time of his birth) and go sit with his ashes and meditate on his life, but I never really felt compelled to reawaken at the time of his death. Because I associate Owen’s death with sunrise, I always feel like he is here with me a little more when I feel the sun warming my skin.

What Happened to Owen?

Posted in babies, babyloss, Ellis van Creveld, genetics, hard decisions, pregnancy, short rib polydactyly syndrome by

We got the results of our genetic testing several weeks ago. I’m not sure how much I’ve alluded to it here, but we had a full skeletal dysplasia panel completed with Owen’s cord blood. It took a full 3 months to get his results, and there was a chance that we wouldn’t get a result at all. Not all causative genes for SRPS or Ellis van Creveld have been found, so we had about a 60% shot at getting a meaningful result.

Owen had a mutation in the EVC2 gene, which means that he officially had Ellis van Creveld syndrome. This is what I had suspected during pregnancy, but since Owen was so severely affected at birth, I had started to think I was wrong, that he actually had one of the definitively lethal short rib polydactyly syndromes.

So what did EVC look like for Owen? He fit all the typical signs pretty closely: extra pinky fingers on each hand, short ribs, congenital heart defect, and short arms and legs. Except for the heart defect, which occurs in only about 50-60% of babies with EVC, his clinical presentation was fairly standard for an EVC baby. I’m still left to wonder why he was so severely affected. This was the diagnosis we had hoped for throughout pregnancy, but it didn’t bring us any hope in the end. (I want to be clear, though. For most babies with EVC, respiratory support at birth and surgery to correct any heart defects can lead to a happy, relatively healthy child. This disease is not lethal for 70% of babies, which is pretty significant.)

Most papers about EVC cite the heart defect as the main indicator of whether or not the baby will thrive. We found out that Owen had a form of hypoplastic left heart syndrome at around 33 weeks, which is one of the most complex heart defects to repair. There is no cure for HLHS. Parents with HLHS babies are given the option for comfort care or a series of surgeries that are considered palliative–the baby’s heart is essentially rebuilt so it can function with one ventricle, but there may be the need for a heart transplant as the child grows. Owen’s case wasn’t severe and even may have allowed for a repair with two functioning ventricles, but it was bad enough that we could be almost certain he would need open heart surgery at birth. I think it was probably around this time that it hit home for Zach and me that we wouldn’t be bringing our baby home for a long time if we got to bring him home at all. Our pediatric cardiologist, Dr. Videlefsky, was wonderful to us and so compassionate about Owen’s needs. I called him the day I got induced to let him know Owen would be here soon, and he assured me he would come whenever he was needed to evaluate Owen, which is no small feat since Owen was born at 3:08 am and Dr. V lives in Atlanta (about 1.5-2 hours away from us, depending on traffic). Owen cried some when he was born but needed lots of respiratory support. He did better than the NICU staff thought he would, so he was taken to the NICU to wait for Dr. V. During this time, his respiratory status was declining, and we knew that if we did not intubate him, he would die. I really, really did not want him to go through intubation if he wasn’t going to live anyway, so we tried some stop-gap measures until we knew if he would be a candidate for heart surgery.

As it turns out, Owen wasn’t a good candidate for heart surgery. His short ribs didn’t support the development of adequate lungs, so he wasn’t able to breathe well at all. It’s ironic that Owen’s heart, while not formed properly and not well-functioning, is not what took his life. When Dr. V did Owen’s echo, his pulmonary hypertension was so severe that he most likely would not have survived the surgery required to treat his heart defect, much less the recovery afterwards. His heart wasn’t really great either, but Dr. V thought a two-ventricle repair would have been possible if Owen’s lungs weren’t so tiny. He shared that he did not think it would be in Owen’s best interest to pursue surgery. Perhaps the biggest blessing in that moment is that I have never doubted Dr. V. I didn’t feel comfortable fully trusting any other doctor that evaluated Owen, but I trusted Dr. V.

We made a decision that I never wanted to make even though I had been preparing myself for it since 33 weeks. We stopped all interventions. We made Owen comfortable and rested him on my chest. He didn’t seem to be in any pain, and I thought at least I can give him this. He knows me, knows my voice, knows my heartbeat. I can’t keep him alive, but I can keep him loved.

That’s the why, medically, of Owen’s death, and I know we won’t ever have an answer to the greater Why (nor do I think there is one). It helps me to at least understand what physically took him from us. It has been hard for me since getting Owen’s official diagnosis. I spend a lot of time running the numbers: if only 50-60% of EVC babies have a heart defect, and only 30% of EVC babies die, how did this happen to us? Why weren’t we lucky enough to only pass on a mild form of debilitating disease to our son?

Zach and I have since undergone our own round of testing to confirm that Owen’s condition came from us, and we have both been confirmed to be heterozygous for a mutation in the EVC2 gene. That confirms that we carry EVC and passed it on to Owen, as I’ve referenced before. There is no effect of carrying EVC; it is only expressed when a person inherits 2 bad EVC genes.

Occasionally when people hear Owen’s condition was genetic, they start to ask about our family histories. Surely there were signs, they think. I’m sure the impetus for this is the fear that people could unknowingly pass a lethal disorder onto their children, but that can indeed happen. It happened to us. As far as Zach and I have been able to track, we have no family history of EVC. It seems that it has never been expressed before, which just means that our relatives who carry EVC produced offspring with non-carriers or got lucky and produced healthy offspring with another carrier. It’s rare to carry EVC and even rarer to mate with another carrier. The chances that Zach and I would both be carriers is 0.000004%, but now our chances of having a sick baby are 25%. How’s that for odds? It would actually be kind of romantic if it didn’t end with neonatal death. Statistics can shove it now as far as I’m concerned.

 

 

 

PSA: There was also no test available that could have told us we were carriers before I got pregnant. EVC is too rare to be covered by most prenatal genetic screenings. However, there are some options for testing that screen for more common genetic diseases like cystic fibrosis, Tay Sachs, spinal muscular atrophy, and others. Zach and I completed a genetic screening through Counsyl to ensure (as much as possible) that EVC is the only disorder we are at risk of passing to our babies. I suppose some people may balk at the idea of this kind of testing, but I would have felt so lucky to find out I was a carrier of a genetic disease via a lab report rather than being told my baby was going to die.

Baby Loss Before and After

Posted in babies, babyloss, pregnancy, recovery by

I’m inspired by Meghan at Expecting the Unexpected today. Some of you may have seen the series of photos that seem to have gotten popular lately of women before and after having their babies. The first photo is usually a maternity photo with a big, pregnant belly, and the second photo is the same as the first, but re-staged with the baby where the belly was months prior. To most people, these pictures are adorable. Brutal honesty: I resent the hell out of these pictures. I don’t ever seek them out, but they pop up in my newsfeed on facebook or in random places around the internet from time to time. Sometimes I wonder if feeling bitter at these types of things is something I should work on, but that’s an issue for my therapist and future me to work on.

ANYWAY!

Meghan made her own set of before and after photos as a baby loss mama and issued a challenge of sorts for others to do the same. I had maternity photos taken while I was pregnant, but I was so darn excited about this that I used a cell phone picture Zach took during the Georgia snowpocalypse and recreated it when I got home from work last night, so forgive the cell phoney quality. I may recreate my maternity photos later on because I think it would be neat to have ones with Zach included, especially the ones where he’s holding Owen’s little dinosaur shoes on my belly.

29ish weeks pregnant

29ish weeks pregnant

Five months post Owen

Five months post Owen

Putting on my old maternity clothes was not as emotional as I thought it would be, but looking at that old picture was. During all of this snow, I remember talking to Owen about it–how fun snow in Georgia is, how it shuts the whole city down. I wrote his name in the snow and took a picture, thinking that if he lived I could show him he had gotten to enjoy the snow in-utero and if he died, well…I had proof that we had always included him, always loved him.

I loved recreating this picture. While I haven’t seen very many of the slide shows Meghan linked to on her blog yesterday, I had assumed that some of them included empty-armed mothers like us. Surely, there was some acknowledgement that there are women who carry their children but don’t bring them home. Apparently, there wasn’t, so here’s to us.

 

 

Talking About Owen

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Someone asked me how my baby was doing last week. Naturally, it got awkward. I don’t remember meeting this person while pregnant, but apparently she had been training with a coworker of mine and had spent a day at my old office back in December. We spoke for a few minutes back then but I can recall literally none of this interaction. It’s not surprising. In December, I was going back and forth between various specialists trying to get answers about what was wrong with my baby and whether it was lethal, debilitating, or only slightly disabling. To put it mildly, my mind was elsewhere. When I met this woman again yesterday, she kept trying to jog my memory. “You were about to leave for an appointment. It was a really busy day. It was just a few days before Christmas. You were wearing a red shirt.” Nope, sorry, I replied. I usually have a very good memory for names and faces, but I couldn’t remember her. I apologized and just asked her to remind me of her name and position. She did, and I thought we would proceed with our business. But no. Of course.

“So how’s your baby doing?” Very upbeat. It would have been uncomfortable enough if it were just the two of us, but we were in a group of people who also didn’t know I recently lost a son. I hesitated, knowing I was about to drop a bomb and she had no idea. I spoke very quickly, “he died very soon after he was born.” She apologized appropriately. I thanked her. I could feel everyone looking in my direction. Pity, curiosity, confusion–all of it directed right at me. What I really wanted to say was that I had a son whose name was Owen, that he lived for a few glorious hours and then he died, that he was magnificent, but what I did was direct my attention back to work. No one acted inappropriately, but I know talking about Owen usually makes other people uncomfortable, so I moved on quickly with what we were originally doing.

To make it clear, I love talking about Owen to almost anyone. Love it, love it, love it. I can tell you about his feisty personality, his chubby little cheeks, his brown (!) eyes, his fluffy hair, his extra pinky fingers…anything, really. Ask me anything. I will talk about my baby like any other mother. I don’t even mind talking about his death, although that’s a much more intimate conversation. At the same time, not everyone is prepared to receive the news of a dead baby. I’ve had to tell unsuspecting people that my baby died before–medical providers, other coworkers, patients (not often)–but it is usually one on one, and I am usually prepared for it. I have typically readied myself to do the hand-holding required (it’s okay, we knew he was sick, yes I’m fine/it’s fine/we’re all fine, and so on).

I had no reason to suspect that the coworker I mentioned above had any idea that I had ever been pregnant or had a baby, so I was completely taken aback. She was very nice, and she didn’t do anything wrong. There are just some days I don’t feel like carrying the burden of comforting someone else while I’m having to tell them something that pains me, so I was probably a little cold or standoffish. I felt bad at first, and then I felt irrationally angry. This woman did nothing inappropriate and said all the right things (aside from being a little insistent that I remember her), but just…it is not my responsibility to help anyone else deal with this or figure out what to say! I was anticipating the need to comfort her the moment she asked about my baby, so I got my hackles up preemptively and reacted before she even had a chance to show me how she would have really responded beyond “I’m sorry.”

That’s when I realized my anger is my fault. I have always assumed I bear the responsibility for comforting the other person in these conversations, and I resent it almost every time. I hate hearing myself say “It’s okay, we knew he was sick” because it is not okay at all ever. Sometimes I don’t talk about Owen when I want to because I’m worried it will make other people ill at ease, which truly sucks…but no one has ever asked me not to. I pretty much stopped referencing Owen on social media after he died because I didn’t want to be attention-grabby, which actually sounds kind of absurd now that I’ve typed it. So after today, no more. My baby died. And since I have to live that reality every day, I think I should get to live it as I want to, not in reaction to how (I think) other people perceive it.

Time Marches On

Posted in babyloss, genetics, hard decisions, pregnancy by

This Friday will mark 4 months since Owen was born and died. During this week last year, I was taking my first positive pregnancy test, barely able to believe it. For some reason, that feels pretty significant to me–that in a week, what I really consider “the year of Owen” will be over.

People have asked us if we are going to have another baby. Owen’s cardiologist paid us the overwhelmingly kind compliment that we absolutely should be parents because a child deserves to experience our love. That was definitely a balm to my heart. Without even knowing it, I had been feeling insecure about parenthood, as if maybe we shouldn’t be parents because we couldn’t keep our baby alive. Anyway, I don’t really plan to share our thought process about how we plan on having more children (either biological or adopted) in this space for now. It’s too private and involves a lot of ethically murky decisions. I’m sure I’ll post when we are actually bringing home a live infant, but until then, we’re keeping our cards close our chest(s).

However, I would like to share some of the decisions we face as carriers of a genetic disease because it’s an important part of our grief. As I’ve said before, Owen’s form of skeletal dysplasia is genetic, autosomal recessive. We have known this since we initially saw problems on his ultrasound at 15/16 weeks, but it didn’t really start to sink in until he died that we have a 25% chance of having another baby with a lethal disorder. I was on the phone with a perinatologist who specializes in the short-rib dysplasias (SRPS, EVC, and Jeune’s) the other day, and she said “Unfortunately, genetics has no memory. It’s not as if your genes will realize they’ve already caused your family enough heartache to last a lifetime.” It’s true–we have a 1/4 chance in each pregnancy. We do not get a pass in the next three pregnancies because we already had our 1/4.

We aren’t exceedingly rare. Many other people carry genetic diseases somewhat more common than ours (cystic fibrosis, spinal muscular atrophy, and Tay-sachs, for instance), so we have some experience and trial/error to look to when we make our own decisions about family-building. Before I enumerate our options, know this: there are people reading this blog who have made many of these decisions. It is impossible for anyone who has not gone through this to know what they would do when presented with these options. Every choice is deserving of respect and validation. In no certain order, here are the options:

  • Conceive naturally: Numbers-wise, we have a good chance of having a healthy baby. 75% is nothing to scoff at, and the chance that we’ll have a baby that doesn’t even carry an EVC gene is the same as having a baby with both EVC genes…those are pretty good odds. BUT. It’s hard to say that those are good odds when they didn’t work for us on our very first try. I know women who have had multiple pregnancies in a row that resulted in sick babies. I also know women who have 2-3 other children and have only had one sick baby. Trying to have a baby naturally is not without heartache. We know Owen’s genetic mutation. We can test for it in the first trimester. Getting pregnant begs “what if?” Do we carry the baby to term knowing he/she will die? Do we terminate the pregnancy? Is it even ethical to get pregnant knowing there’s a 25% chance the baby will die, whether we choose when or not?
  • IVF with PGD: PGD stands for preimplantation genetic diagnosis, which is the testing of an embryo before it’s implanted in the mother’s uterus. Even though we don’t have any apparent problems with fertility, we could opt to undergo IVF to create embryos that can be tested before they are implanted. I’ve spoken with a doctor from one of the major PGD labs, and there’s apparently no correlation between natural fertility and successful IVF. That means that even thought we could get pregnant on our own easily, IVF isn’t going to be easier just because I’m fertile. IVF/PGD has a 45-65% chance of resulting in a healthy baby. Technically, the odds are worse than with natural conception, but the stakes are far, far lower. If it doesn’t work, we don’t have a baby, but we also aren’t risking anymore dead babies. However, if it’s successful, we could be left with healthy embryos that we will never use. That’s a lot of potential life. IVF/PGD is also quite expensive, anywhere from $25,000-$50,000 or more, depending on how many rounds of IVF it takes to get pregnant. This is not covered by our insurance, so it would be totally out of pocket. We aren’t struggling with money (although having a critically ill baby leaves a lot of medical bills, even if he dies), but we don’t have thousands of dollars just sitting around.
  • Adoption: First, we plan to adopt no matter what we choose as far as biological children goes. Even if we have one or two of our own successfully, we want to give a home to a baby or child like with special needs, like our Owen. However, the idea that healthy infants are in high supply in the US is incorrect. Traditional domestic adoption costs many thousands of dollars and can take years. International adoption is also quite expensive and can also take years. We would like to save to adopt internationally, as resources for kids with complex medical needs are scarce in many other parts of the world. We are good candidates: healthy, stable, and young, but the notion that we should “just adopt” makes the process sound easy, straight-forward, and free of grief. It’s none of those. Adoption is a viable option, but it isn’t without its difficulties.
  • No more kids: A viable option! Not one that we are likely to choose, but I guess anything is possible.

I share all of those options to say this: there is no easy way. Getting pregnant and having healthy children is a miracle and a blessing. For us and people like us, it will also be a feat of science, money, or both. There is truly no black and white, right or wrong answer. I’m a member of an on-line message board for women (and men, I guess, but only women are really on the board) who carry genetic diseases. Some people conceive naturally and either carry to term or terminate. Some go through IVF/PGD with success, some don’t. Some choose adoption or use donor gametes/embryos. There are no easy answers, and every choice is valid. I’m not sure what we’ll choose (and I don’t know that I’ll ever discuss it here until I have a live baby in my arms), but I rest in the knowledge that there are women who have gone before me and have come to the other side with grace.

Finding Myself After Loss

Posted in babyloss, pregnancy, recovery by

Owen’s life brought me a lot a of joy. Carrying him and fretting over him was stressful and heartbreaking, but it also taught me a lot about mother/parenthood, and I know that I am a better person for having grown him, birthed him, and loved(ing) him.

However (and it’s a big however), being pregnant with a baby with multiple fetal anomalies (a phrase I hate but can’t escape from) is hands-down the most physically and emotionally taxing thing I’ve ever done in my life. I think the emotional heartache is obvious at this point, but the physical difficulty is something I wasn’t prepared for. I had polyhydramnios that gradually increased from my second trimester and reached it’s peak about 3 weeks before I delivered. My belly consistently measured about 3-5 weeks ahead of how far along I actually was throughout the second trimester. Then, at 30 weeks, I measured full term. I asked my midwives if we could just stop measuring at that point. I don’t know what I measured at 36 weeks, which was peak polyhdramnios time, and I don’t want to know. Extra fluid is consistent with an asphyxiating form of skeletal dysplasia (the chest is too small to allow the baby to process amniotic fluid), so every time I heard how far ahead I measured, all I could think about was Owen’s tiny chest and his inability to swallow fluid and how likely it was with each increasing centimeter that he was going to die.

Polyhydramnios can bring on a bunch of uncomfortable symptoms that make life in general pretty unpleasant. I was quite short of breath, which can happen in later pregnancy anyway but seemed compounded by my high fluid levels, and I often felt like I just couldn’t breathe very deeply or get enough air. I had AWFUL pain in my ribs. AWFUL. Sometimes Zach would find me on all fours on the floor because it was the only position that really brought any relief. My belly got all stretched out and shiny. Obviously, all pregnant bellies stretch, but my belly was pretty crazy at the end. At 30 weeks, I had no stretch marks, and then my belly had about 4 weeks worth of growth in 1 1/2. Bam. Stretch marks. My shiny, stretchy belly also got pretty itchy, and I didn’t find any relief from that until 2 weeks postpartum. The irony is that I was dreading stretch marks from the beginning of pregnancy, but when I got them I was relieved. Even though Owen died, my body will always carry the physical evidence of him.

All that is to say this: Owen’s pregnancy made my body and emotions a wreck. Beyond losing him, which is its own grief, and beyond pregnancy itself, which carries its own challenges in the best circumstances, pregnancy with Owen wreaked havoc on me. The constant physical discomfort unique to carrying a baby like him combined with the never-ending worry and life/death news laid waste to me. From 16 weeks on, my energy was directed toward my baby. Researching, talking to specialists, doing everything physically and emotionally in my power to support Owen consumed most of my time. This increased exponentially the further along I got, and at the end of pregnancy, I’m not sure I gave a single thought to my own needs. If you had asked how I felt, I doubt I would have acknowledged that the extra fluid was having any affect on me or that I was devastated with worry. That took energy too, putting up a front that this was okay, that I was ready, that I had everything under control. By the time Owen was born and died, I had lost myself.

In the weeks after losing Owen, we were in shock-panic-disaster mode. All at once, I had no energy because of my grief, but I also had all the energy I’d ever had, because my whole body said “something’s very wrong and you need to fix it!” People brought us food and visited us in shifts, and I really don’t have words for how overwhelmingly supported we were by literally everyone, from our friends and family (which, to be honest, I expected because we have awesome friends and family) to our medical providers (wonderful!) to complete strangers (a blessed surprise–we still don’t know who left a bunch of groceries and the kindest letter on our front porch, and people we had never even met participated in our meal train). I’ve written previously about how freely I moved in and out of my sadness during those first months without Owen. Similar to pregnancy, I devoted my time and energy to my grieving and making sure that Owen would always be remembered. I was reluctant to give it up. I was up one night with Zach, tearful and lost, and I told him that I wanted to move through this stage, but I was worried that if my days weren’t full of missing Owen that I would forget about him. I wasn’t ready to be anything but Owen’s mother. I wasn’t ready to go back to work or read a book or go for a massage or really anything that might make me feel like me.

I only wanted to be Owen’s mom, but I also deeply felt that I was losing the self I am outside of motherhood even more. I didn’t look like myself, with my hair unkempt and my body shaped differently than I was used to. I didn’t feel like myself either; I had no idea what was happening in the world or even with the people around me. I wanted to be (what I saw as) selfish and carve some space out in my life for myself, so I did. Vain as it may be, my lumpy body and extra 30+ pounds bothered me a lot*. I couldn’t fit into my clothes, and I felt awkward all the time. I had tried to get out of the house to make myself feel better, but my maternity clothes were too big, and my pre-baby clothes were too small. All I had were yoga pants and Zach’s t-shirts. I felt ungainly walking around Old Navy in a maternity dress, but the first time I put on jeans that really fit, I felt so good. I could go out to dinner! And the movies! And for walks! I had pants!

So that was the first step. Every day after that, I put on clothes that fit and straightened my hair. I put on mascara. I called my boss and told her I was coming back. I put some new books on my kindle. I didn’t forget Owen; I just started taking care of both of us. I went back to work, and it was a setback. Zach had started meditating to deal with his adjustment, so I gave it a shot, too. That was a little too much silent emotion for me, so I did yoga instead. I put my mat on our back patio and thanked the sun and the wind with my movements. It was fitting because I think about Owen when the wind blows gently and the sun shines down on me. I practiced self-compassion. I read books and ate more vegetables and listened to the news and tried to keep track of other peoples’ life events. It worked. I felt a little bit better week by week. I felt more like myself, which was odd because I had sort of forgotten what I was like. It was as if I was meeting an old friend after years of distance. I still remembered Owen as much as I had before. I still loved him. Taking care of myself didn’t negate his memory.

 

*This is specific to me. Some people are perfectly comfortable with their bodies a few weeks post-baby, and that is totally fine. But I wasn’t, I’m not, and I probably won’t be until I can fit back into my pre-pregnancy jeans. Maybe if I had my baby, I’d feel differently. I don’t have my baby, so I think I’m entitled to my jeans.