Talking About Owen

Posted in babyloss, pregnancy by

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.

An Epic Cat Story

Posted in cats, Dot, random by

Writing about baby loss and the implications of genetic disease can get a little heavy. In an effort to lighten things up around here and remind myself that we still have other interesting things happening in our lives, here’s a long and crazy story about our cat:

One year ago this week, Zach and I moved from Atlanta to Athens (don’t stalk me, internet). We were newly pregnant, starting new jobs, and looking forward to our Athens life. Since we could afford it this time around, we hired movers. It was fantastic! We rented a U-Haul, and the movers showed up to our house bright and early in the morning, ready to move all of our stuff for us. By mid-morning, the move was going great, and I drove over to Little Five for coffee and bagels for our crew. There was an unreasonable amount of traffic and other goings-on for Saturday morning, so I didn’t answer my phone as I drove. It had wrung about three times, so I picked it up as soon as I pulled into the parking lot of the coffee shop, wondering why on earth I was so popular. Turns out all the calls were from Zach. Sure that something was wrong, I called him back immediately. I was right. He sounded frantic and told me that our littlest cat Dot had been near the front of the house when one of the movers scared her. She became frightened and ran straight out the open front door, across two of our neighbors’ yards. He went after her, but hadn’t found her. She had been gone for about 20 minutes, give or take, and he was still exploring the yards around our house for our tiny kitten.

Here’s a little relevant background on Dot. We had found her in a warehouse parking lot in southwest Atlanta about a year prior. Zach was part of a makerspace, and I was picking him up since we only had one car at the time. I was there early one night with Krystal cheeseburgers (we weren’t vegan then, obvs) to keep me company. As I was waiting, I saw a tiny little cat darting between cars. This was no place for a kitten! The parking lot was busy, and I was worried she was going to get hit. I stepped out and called to her. She seemed interested but wouldn’t let me get near her. I ripped up my cheeseburgers and made a line to myself. She came close, but she was still too far away for me to grab her. Zach found me when his meeting finished, and we worked together to lure her to us without success for about an hour. I hated to leave, but nothing was working, so we left her a supply of water and what remained of the cheeseburgers. I was sure we’d never see her again. But we were meant to have this cat! I was picking Zach up two nights later and again arrived early with cheeseburgers (Wendy’s this time; side note: I’m embarrassed by my then-diet and would like to assert that I eat tons of veggies now and don’t even eat meat anymore.). Dot stuck her head out from underneath the car right next to me and I climbed out of my car to sit across from her. I offered her pieces of my cheeseburger, and this time she came to my lap! She purred and let me scratch her and seemed generally happy to see me. Zach came out about that time, and I motioned for him to get in the car and be ready for me to hand this little cat over. He hopped in the passenger seat and made sure all doors and windows were closed except mine. I slowly stood, letting Dot rub my legs the whole time. When she seemed least suspicious, I bent down, scratched her head, and picked her up by her scruff. She didn’t go limp like most kittens. I got her into the car, but she jumped all over Zach, angry and confused. I grabbed an old sweater from the backseat, and we wrapped her up and headed for home. She was full of fleas, completely malnourished and dehydrated, and in dire need of a bath, but she was safe. We cleaned her up, rehabilitated her, and she’s been a happy part of our family ever since.

Dot's first night home.

Dot’s first night home.

All cleaned up and ready to be a house cat.

All cleaned up and ready to be a house cat.

When Zach told me she was gone, I was devastated. Our cats are indoor only. They have claws, but they don’t have any hunting or survival skills. I rushed home. We had joked before that if Dot ever got out we’d never find her because she was a little ninja. When I got home, Zach and I searched high and low for hours. The movers packed up the U-Haul, but we cancelled the actual move to stay en extra night to search for Dot. We turned all the lights off in our house that night and left the door open, hoping she’d wander back in. She didn’t. We commenced with the move the next morning, but made a plan to find our lost kitten.

For the next three weeks, we became pet detectives. I called wildlife trapping experts, a group specializing in finding lost pets, and trap-neuter-return programs learning how to catch skittish animals. We were living and working in Athens, but we drove back to Atlanta every night and sometimes twice a day on weekends. I had taken a week off work for a beach trip that we ended up cancelling so I could use those days to search. It was raining buckets (this was during the monsoon time in Georgia last year). We put out humane traps, positioned wildlife cameras in areas we thought she might be spotted, and set bait everywhere. We left trails of food to our humane traps and sprayed tuna juice in the areas near the traps to lure her in. Our fantastic Atlanta neighbors helped in the search, and we posted big, colored flyers everywhere. We caught every neighborhood stray, countless opossums, a few grumpy raccoons, and even two squirrels and one mouse. There was no sign of Dot anywhere.

We hung these EVERYWHERE.

We hung these EVERYWHERE.

Three weeks and one day after she disappeared, losing hope, we checked our traps to find they were all filled with opossums. Hoping that if we moved them to the other end of the neighborhood they’d leave our traps alone, we loaded them into the back of our car and set off. As we were driving away from our house, we started talking about winding down the Dot hunt. We were so tired and sad, and the constant back and forth to Atlanta was draining our bank account and our energy. Just as we were about to decide to scale our efforts back, I noticed a flash in the woods to our left. I didn’t know what it was for sure, but I told Zach to slow down and put the Prius in electric mode. If it was Dot, I didn’t want to scare her with car sounds. I motioned to the woods and whispered to Zach that I saw something. All of a sudden, a little calico face peeked out! Unsure if it was Dot or another calico, I opened my door and crept around the car. This cat had on Dot’s little pink collar and tags. It was her! I grabbed a bunch of cat food and the cat carrier and moved toward the woods. When I got close to Dot, she hopped back several feet into the brush, but I could still see her. I camped out in the green space on the side of the road after I made a little trail of cat food from her to me. I called her name, talked to her, and made little meows in her direction. She called back to me. Gradually, she started to move toward me. Zach remained with the opossums and after realizing this was going to take a while, left to release them.

I sat with Dot for about 45 minutes before she got anywhere close to me. It was another 20 before I was actually able to touch her. She was hungry, but she was also scared and semi-feral. Zach had returned and was observing from afar so as not to overwhelm her. When I finally couldn’t wait anymore, I went to grab Dot’s scruff as I had the first time we met. She lost her mind. Immediately realizing I was going to lose her, I wrapped her in a bear hug and laid down over her in the mud. Zach saw that I was struggling and came over to open the cat carrier. Dot and I wrestled for a minute or two, during which time she stuck one of her claws through one side of my finger and out the other (it was numb for over a month) and bit down to the bone on my dominant hand (I couldn’t write for several days so my paper charting from this week is atrocious). I never, ever let her go. I knew if I didn’t get her this time, we’d probably never get a chance again. I finally got a good hold on her and got her into the cat carrier Zach was holding open for me. We put her in the car, and she was rescued!

Blood was everywhere. I was worried because I thought Dot was hurt, but then we quickly realized it was my blood. After taking a minute to calm down, I discovered that my hands felt like they were ON FIRE. We stopped by our former neighbor’s house and got some water and first aid for me. It was pretty clear by the bleeding and swelling that I probably needed to go the emergency room. We had no idea what Dot had been exposed to, and I was pregnant. However, I had no intention of going anywhere until Dot was safe in our house. We drove back to Athens and set Dot up in quarantine in our guest bath until she could see a vet, then we headed to the ER. I was fine and only needed to have my wounds thoroughly cleaned along with a course of serious (pregnancy-safe) antibiotics. Over the next few days, Dot returned to her old self. She had a touch of pancreatitis and needed to spend a night in the animal hospital, but other than that was totally fine. I gave her a developmental bath like I used to use for NICU babies, and her fur fluffed right back up. Within a few weeks, it was as if she had never left.

Getting rehydrated to help treat pancreatitis resulted in the most adorable bandage.

Getting rehydrated to help treat pancreatitis resulted in the most adorable bandage.

This is one of my best stories, and I love telling people about. In person is even better because I still have the scar where Dot looped her claw through my finger tip to show off. I love that it makes Zach and I sound like cat-rescuing heroes, even though it also makes us sound kind of obsessed.

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.

Let Me Introduce You To My Son

Posted in babyloss by

I’ve been writing Owen’s story. It has been slow-going because there’s grief to process with each paragraph. Some day I will post the whole thing, but until then, I’d like to share my beautiful boy with the world. Our pictures of Owen outnumber the minutes of his life, so there’s plenty to share.

My sweet, handsome, amazing son

DSC_3897

He was never alone, even in the anxiety-filled moments right after his birth.

Owen and Zach holding hands

Owen eyes

All of us

DSC_3925

Dr. Khurana, Owen’s neonatologist, was emphatic that Owen breathed easier when Zach was with him right after delivery. When Zach held his hand, Owen’s oxygen saturation went up, and he responded better to interventions. The first time I said Owen’s name, he opened his eyes and looked straight at me. He had the most beautiful brown eyes. For months before Owen was born, I slept with a small blanket. My intention was that if Owen had to leave me, he would have the blanket with my smell for comfort. Zach put it right next to his head when they went to the NICU. When I first arrived in the NICU, I called out to Owen. He let out a little cry and snuggled his little face into his mama blanket. When Zach and I talked to him, he was so much more restful and content. He knew us. It was wonderful.

When we knew that Owen would soon be leaving us, we dressed him in his train jammies and settled him onto my chest. We read a bedtime book, sang Happy Birthday, and thanked him so much for being with us. We told him how proud we were of him for fighting so hard and how glad we were to be his mama and daddy.

We loved him, loved him, loved him.

We love him.

Book time

Cuddling

family cuddles

That was Owen’s life: beautiful and love-filled, however short.

He was a tenacious little baby. He put the whole force of his body behind his cries. He joined our family with a wail and cuddled fiercly. Then, when he was ready to go, he left us with so much peace. I hope, one day far in the future, to meet death with the same grace my son did. I hope my life will be as full of love as his was.

family picture

Our beautiful Owen Jude.

Universal Grief

Posted in babyloss, genetics, recovery by

I’m constantly surprised that the grief things I thought were unique to me are actually universal. That overwhelming feeling of guilt I had the first time I laughed after Owen died or let an entire afternoon pass without an intentional thought of him? Someone else has been there before. The uncomfortable dilemma of how to answer someone who, during the course of idle chit chat, asks if you have any children? Yep, that’s already happened to a bunch of other broken-hearted mamas.

I have a lot of guilt. I know that it’s irrational and (after some really intense conversations with our cardiologist and Dr. Krakow at the International Skeletal Dysplasia Registry) I know that we did absolutely, 100% the best possible thing we could for Owen in letting him go. He was always going to die. From the moment he was conceived to his first little kitten mewl to the time we withdrew interventions, his course had been decided. But I still have guilt, and I’m learning that that’s pretty universal too. I came across this essay at Still Standing a few weeks ago, and as soon as I read the title, I felt it. I am not alone. When I am torturing myself that I didn’t do more for my son, a great swell of other mothers rises beneath me and holds me up. They’ve all been there before.

A large number probably even know what it’s like to believe that you could have done the impossible. After Owen had died, when his body was still with us but he was gone, I had the strongest urge to breathe life into him–to just put my mouth to his and breathe. He had been so perfect and robust, aside from his tiny chest. I just knew it would save him. I knew the numbers of his illness: the sizes of the chambers of his heart, the gradient of his pulmonary pressure, the circumference of his chest. But, I couldn’t stop myself from thinking that I could give him life if I just wanted it enough, wished hard enough, loved him more, even though I wanted him intensely, wished for him with all of my being, and loved him ferociously.

There’re always the what-ifs in so many things in life, but they are especially present in baby loss. What if I hadn’t taken one dose of ibuprofen, with my provider’s approval, at 8 weeks pregnant? What if I had eaten more protein? What if I had laid on my left side more? I do know that ultimately no amount of left-side lying, protein eating, or medication avoiding could have saved Owen from faulty genetics, from a mutation laced in his cells. I know that I had a nearly perfect pregnancy, health-wise. Still, in the moments when missing him overwhelms every other thought, I wonder, why isn’t he here? There’s no science that answers this pain, and there’s no genetic test that soothes the loss of him, my perfect, beautiful baby son.

End of the Fourth Trimester

Posted in babyloss, work by

Owen would be three months old today. I thought about that this morning as I wrote 07/01/14 on a form for a patient. It wasn’t my first thought when I woke up this morning like it has been for his one and two month birthdays. I felt guilty when I realized that I hadn’t acknowledged his day upon awakening. (For clarification, he would also be 13 weeks old.)

Today was also my first day in a new position at work. I got a promotion, and I’m now working exclusively with teens and also supervising some other allied health professionals. It hasn’t escaped my notice that, on my dead baby’s 3 month birthday, I am doing something that I absolutely never would have had he lived. I’m happy about the new job. I love the work, and it’s closer to home. But I wanted to be getting back from maternity leave today, not advancing in my career. Hell, I would’ve been happy to be sitting in a hospital teaching Owen how to eat without a feeding tube today. I’m happy, I am, but what I wouldn’t give to be happy for so many other reasons.

I met Zach for lunch (another perk of my new job), and on the way back to my office I started bobbing my head to that happy Pharrell song. If you sat next to me at a red light, I wouldn’t look like a grieving mother.

I don’t know what to make of myself in this new (old) life. Sometimes I almost forget. Is that okay to say? Am I really allowed to put it on paper that sometimes I almost forget I had a baby and he died? I will absolutely never, ever forget Owen. But sometimes I forget how sad I am. Sometimes the grief sits so far beneath the surface that I can bob my head like a fool while I’m driving around town.

It Could Have Been Worse

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Sometimes I  do this thought exercise where I imagine how much worse things could have gone for Owen and us. It’s like a really messed up Dayenu, except instead of “it would have been enough,” it would read “it would have been worse.” If Owen had surgery but died by himself on the operating table, it would have been worse. If Owen had not breathed at all or never opened his eyes, it would have been worse. If Owen’s birth had been filled with chaos, it would have been worse. If I hadn’t gotten out of my bed in time to see Owen pink and full of life, it would have been worse. If I only ever saw my Owen knowing that he was definitely going to die, it would have been worse.

Zach’s always telling me not to quantify our suffering as if there are easier or harder ways to lose your child, but it helps in a way. It reminds me that I do have things to be thankful for. I know other mothers whose babies died, and I know that I am lucky to have seen Owen’s big brown eyes. I know so many things that could have happened and didn’t, that I know to be grateful for what good fortune we did have. The math doesn’t always work out though. Sometimes I think: What if Owen had lived for a few years and then died? What if he reached an age where he understood what was happening to him, but we couldn’t save him anymore? What if we had had to tell him he was going to die? I don’t really know how to feel about that. I obviously wanted to know my son, but I am very glad that I did not have to explain concepts like death to him…especially since it’s too overwhelming for me to fully grasp. I know of parents who have had to do this. Perhaps they think if their child had died at birth, it would have been worse. Then again, maybe we, all of us bereaved empty-armed parents, are just lucky in our own ways. There’s probably always a trade-off.

I would rather have Owen here than not, but still, I am so, so glad that I’m not sitting by a CICU bed right now. Often when I was pregnant, I felt that if we could just help Owen through the first weeks to months, then it would all be okay. I’m starting to realize that that is not the case. I know we would have spent the rest of his childhood wondering if he could defy the odds anymore. Every cough would have been a crisis. We would have been completely broke all the time, and I would have not returned to work for many years. I would have given it all–money, my career, the sureness of knowing what was going to happen to my son–to love and care for Owen, but I am still happy for what I’ve got. I’m not really sure what to make of that. If the impossible happened, and I was in the hospital with my baby right now, I’m sure I would choose it. But I’m so relieved I didn’t have to.

I do agree with Zach that there’s no point in putting a measure on this kind of pain. The only outcome is a scale that reminds me that, while we’ve been woefully unfortunate in this area of life, there are so many other ways in which our life could be tragic. When I remember that, I’m both grateful for how very good most of our life is and also terrified of what else I can lose. I never would have considered life to be so fragile before, but now that I know differently, I’m trying to learn to live as infinitely as I can in each passing moment.

The Best Dad I Know

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Owen and Zach

 

I am immensely lucky to be married to a man who held our family together with grace and courage at the same time it felt like we were losing everything. We only got to be parents in our physical universe for a mere 4.5 hours, but oh how privileged I am to have witnessed my husband become a father.  Zach is surely the best dad Owen could have ever wished for, and I couldn’t ask for a better partner to hold tight to, full of love and strength.

Happy (belated) Father’s Day to my most wonderful love.

 

It Happened

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I’ve been dreading patients’ questions about my baby the whole time I’ve been back at work. It’s pretty common that patients ask me about my personal life, which I can understand because I am aware of the most intimate details of their lives. I figured it would happen with one of the teen patients I see. Because they have regular, frequent appointments and I am the only nurse many of them have seen, they tend to feel comfortable asking me very personal questions (again, also probably because we talk very openly about things that are very personal for them). I was surprised today when it happened with a regular, adult reproductive health patient. I had seen her last year for her annual exam, but I wasn’t pregnant at the time. She had asked then if I had any children, to which I jokingly responded that my animals were the closest thing I had to kids. At this year’s annual, I was talking to her about preconception health and her plan for kids when she said “You don’t have any kids if I remember correctly, right?” Gah. I froze. It would have been really easy to say no. I don’t have kids. But I did have a baby, and I didn’t want him to go unrecognized. I knew telling the truth would risk making her ill at ease for a visit that is already uncomfortable for most women, but there was no way I was going to be able to pretend that I hadn’t experienced the greatest joy and greatest tragedy of my life. I told her I had a son who died as an infant, but no, I didn’t have any other children. It actually wasn’t all that awkward! She was slightly taken aback but simply told me she was sorry. I thanked her, and we got back to her visit.

I’m glad that milestone of bereaved parenthood is over. It wasn’t exactly the situation I was dreading-someone asking about my baby or talking to me about new motherhood, but it’s good preparation. I’m sure it will happen again, and I hope that it will go as well. I’m happy that the first time happened with someone who knew the right things to say and reacted remarkably well.

Forward steps, everyday.