Time Marches On

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.

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Finding Myself After Loss

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

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

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

Owen and Zach holding hands

Owen eyes

All of us

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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

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

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.