My three P’s of grief survival

This week I had the honor of being the guest speaker at a local hospital’s night of remembrance- an event they put on for those who lost babies. It was a beautiful ceremony, with music, poetry and a touching sand ceremony. Here is my speech:

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Meghanol is Program Director for Hope After Loss, the Connecticut based non profit that supports the pregnancy and infant loss community. She is also a practicing nurse midwife in the greater New Haven area. But today she is here as Mabel’s mom.

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I was 27 weeks pregnant with my first child when the doctors told me my baby was going to die. I was thrown into a state of shock and disbelief. I had already had my share of grieving this pregnancy- I survived a threatened miscarriage early on and at 13 weeks an unexpected Down Syndrome diagnosis caused me to grieve the loss of the child I thought I would have and work on accepting the child I was given.

And then at 27 weeks, my baby had no fluid, meaning her kidneys were damaged and lungs would be severely underdeveloped. I was told my baby would be unlikely to survive after birth, let alone pregnancy. Two months later, I gave birth to my daughter, Mabel, a 5 pound 5 ounce feisty little girl, who gifted us six sweet hours with her.
Though I can speak her story now, with a smile of pride, I struggled hard with sorrow and grief from the moment we learned she would be very sick. I was constantly looking for answers on how to do this- how to simply go on. I eventually found my way, and now two and half years later, I want to share three things I have learned help me with my grief. These are my three “P”s of grief survival.

Patience.

Practicing gratitude.

Perspective.

 

Patience

“Do you have kids?” was a question I dreaded from the time I learned my daughter would not survive. I tried out many different responses and I had to be PATIENT with myself as I learned which ones worked.

None living.

I had a daughter.

I had a daughter who died after birth.

Some answers produced a look of horror on the askers face, others were too subtle, resulting in awkward follow up questions and others still shut the conversation down completely.

Finally I settled on:

“I had a daughter but she died.” And following the requisite “I’m so sorry” I learned to say. “Thank you. And thank you for asking. I really like talking about her.”

This response took years of trial and error. Be PATIENT, Meghan. I had to figure out what felt best for me- what made me feel like I was being honest, but also protecting my daughter’s memory and keeping the conversation alive. It was arduous work at times. And just like with my grief, I had to be PATIENT with myself. Sometimes my responses were clumsy and ugly, leaving everyone feeling awkward. But with time I got better. You too will learn how and when and if you share your children with the outside world. The answer might change over time or with your audience. Just be PATIENT.

Practicing Gratitude

Not long after learning about Mabel’s prognosis, I was struck by a quote I saw floating around on facebook.

“The things you take for granted, someone else is praying for.”

I had been wallowing in a state of “life is unfair” and couldn’t figure out how to move forward. This phrase gave me some guidance. Instead of focusing on the things others took for granted- healthy pregnancies, being among pregnant women without jealousy, assumption that they would be taking a baby home and I tried to remind myself of the things I was GRATEFUL for- the opportunity to simply be pregnant, my own good health, an amazing OB team, an active baby. It was my first shot at the PRACTICE OF GRATITUDE during an extremely hard time. It didn’t take away the hurt of carrying a dying child, but it helped me find something to cling to while I felt like I was drowning in grief.

Later, after my daughter died, when the sadness started getting overwhelming, I participated in a challenge, forcing myself to find 3 good things every day and sharing my GRATITUDE about them on facebook.

I was even able to take other people’s comments and reframe them under that GRATITUDE lens. Shortly after Mabel died, a very good friend told me of his grandmother’s stillbirth experience- how the baby was rushed away before she could even see him. “At least you got to hold her,” he said to me meant as words of comfort. This was the first of many “at leasts” I heard. It took time, but I was eventually able to reframe such comments. “I’m GRATEFUL you got to hold her,” was what he meant. And I am GRATEFUL.

Perspective

After my daughter died, I felt like there were pregnant women and babies everywhere. I was in Ikea, trying my hardest to be a normal person, when I saw a woman I knew. She had a baby in a carrier on her chest and held a toddler by the hand. It hurt to see someone with everything I ever wanted right in front of me and I felt mad and jealous that other people have it so easy. I could only see her from the PERSPECTIVE of a baby loss mom.

A few months later, I attended my first walk to remember with Hope After Loss. As I worked my way through the crowd, I saw that same woman with her two young children. We were in the same club. I was there to remember my Mabel, and she was there to remember her firstborn, a daughter she lost to stillbirth. I gained greater PERSPECTIVE in that moment. Just like me, many others carry invisible burdens.

So my dear friends, I present to you what I have learned. Be PATIENT with yourself as you learn how to navigate your new normal. The path is not easy, nor one would have chosen, but it belongs to you and your baby. PRACTICE GRATITUDE- of the little things and of the great things. Find what’s good, and it will be a lifeline in your sorrow. Gain PERSPECTIVE. Remember, you are the one in four. Though you are now a member of a club your never wanted to be in, you’ll find the fellow baby loss, once they reveal themselves, among the most compassionate and supportive people you have ever met.

There is nothing that will take away the pain of losing a baby, nothing that will fix your grief… and there shouldn’t be. But there are ways to make the path we walk a little gentler. It is not moving on, leaving grief behind. It is moving forward, learning how to walk side by side with grief. Because we can never forget our babies. They are etched on our hearts, burned in our memory, our constant companions- silent but speaking volumes.

She’ll remember

Some patients are difficult. Some take a long time. When I saw on my schedule that I had a patient coming in who “needs extra time” and had an extra slot blocked off for her, my stomach dropped a bit- it would make for a long afternoon. Until I read the name of the patient and realized who it was. Yes, she needed extra time. Yes, it could be difficult to care for her. But she was so pleasant- a pleasure actually.

Her chart labeled her simply as “learning disabled.” I have been taking care of her for years, having inherited her when her previous midwife left our practice.   My guess is she is on the autism spectrum somewhere, though I am not a psychiatric provider. She also has some compulsions, leaving the house wearing no less than ten layers of clothes. The extra time needed for her was merely so she could dress and undress.

She spoke in in a loud monotone voice, but was friendly. She complimented me, and just about everyone else she interacted with, on at least several pieces of clothing I was wearing.

“That’s a nice sweater and necklace and shoes and hairstyle. Your hair is so long. It wasn’t that long before.”

“No I think it’s the longest I’ve ever had it.”

She has an astoundingly accurate memory- for people and dates especially. She could tell me the exact date of each of her mammograms over the past year. She quoted from a letter she received from her previous midwife informing her of the death of a mutual friend of theirs.

“I didn’t see you last year. I saw Margaret. You were on maternity leave,” she started. I could see where this was going. “Did you have a boy or a girl?”

“A girl,” I answered with a smile. Isn’t it nice when people ask about our babies?

“That’s nice. When was she born?”

“February 15.”

“Oh, the day after Valentine’s day. That’s nice.”

And then the visit somehow went one. I asked my typical calcium intake and exercise questions. We discussed her weight. I asked how retirement was. And all the while I thought about her amazing memory. I would have told her the truth if she asked the right question, but it didn’t come up. I felt like she would ask about my baby in years to come, because she would remember. So at the end of the visit I said to her,

“I have to tell you something. You asked about my baby earlier. Well, I wanted you to know that she died shortly after birth.”

“Oh, that’s so sad,” she said without hesitating. “What happened?”

“Well, she her lungs were too small and she couldn’t breathe.”

“Why were her lungs small?”

“So she had some birth defects, because she had Down Syndrome. Sometimes babies with Down Syndrome had issues like hers.”

“I know some people with Down Syndrome. That’s sad about your baby.”

“Thank you. And thank you for asking about her.”

I wanted her to know, because she’ll remember. She’ll remember Mabel for years and years.

Is there someone you know that will remember your baby always?

Mabel’s First Birthday

One year ago today was the saddest day of my life. The day also brought joy- the birth of my first child, long awaited and very wanted- but that joy was overshadowed in the hours following her birth. I went from utter amazement that I had a baby and despite the odds stacked against her, she cried. She might live, I thought. My excitement lasted minutes, until Chris updated me from the NICU. Her lungs were too small. She would die. As I raced to wrap my mind around this outcome, known as a possibility for months, her condition deteriorated in the hours that lay ahead. The days I thought I had with her melted into just a few hours as the vent and oxygen failed to sustain her tiny body. We took away that pain, removing her from life support, after just six and a half hours of life. The warm solid baby that lay on my chest became heavy and cool, her skin turning from a light pink to a mottled purple, her lips deepening to a dark red. I held her until I could hold her no more and gave her up for the final time.

One year ago today my daughter was born. Today is her birthday. But today is her death day.

In my early days of grief, I envisioned such a different day. I would plan a birthday party- a large, kiddie birthday party, with hats, and cake and balloons. I would invite everyone who I would have had she lived and ask them to bring books to donate to a needy school or library in the area. I would write Mabel’s name in each of the books, so she would live on when others read her name. It would be a celebration of her life. I was inspired reading about another mother’s celebration of her baby taken too soon.

Holding that birthday party is part of that ideal grieving woman I often aspire to be, but feel like I fall so short of.

But I can’t have that birthday part for Mabel. I’m just too sad.

I’m sad that it’s even a decision I have to make- how to celebrate my dead baby’s birthday and death day. I’m sad that my baby died. I’m sad she suffered. I’m sad that I have suffered. I’m sad that I’m not where I thought I’d be in my grief at one year. I’m sad that she’s not here. I’m just so so sad.

No big party today for Mabel. No party hats. No book collection.

Today I plan to hide under the covers. I know I have so many people in my life who are supportive and thoughtful (many of whom have already graciously reached out) and their support is welcome. Today, though, I plan to turn off my phone and hide from social media and just be sad. It’s too overwhelming to be gracious and sad at the same time on this day.

As the day approached and I recognized I wouldn’t be making my dream birthday party happen for her, I made an alternative plan. I couldn’t face an in person celebration, but I wanted her recognized so I invited friends and families to a virtual one. I sent these invites out earlier in the week:

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In memory of our daughter on her first birthday we invite you to join us in doing a Random Act of Kindness.  Enclosed you’ll find a small notecard that you can leave behind, if you choose, when doing your Act of Kindness.

We would love to know what you do in memory of Mabel.  Please feel free to email us or post on social media.

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Feel free to join us in Mabel’ virtual birthday party. Or you could simply learn more about her here:

Happy Birthday, baby. I love you. I miss you. I wish you were here.

Sometimes knowledge is power and sometimes knowledge is pain

I have a friend who is a doctor and she shares snippets of her daily life- the trials and tribulations of a resident physician, her patients and the lessons about life she learns. Some stories are beautiful and uplifting. Some make me cry. Some make me cringe. All are insightful.

Recently she wrote of a meeting of providers- discussing their patients’ cases and one of them, an oncologist was distracted because he had recently learned of his mother’s breast cancer. He had trouble focusing on the meeting because he knew better than anyone what the diagnosis meant for his mother and his family.

“Because sometimes knowledge is power and sometimes knowledge is pain.”

This was me, my entire pregnancy with Mabel. I had a week before my first ultrasound where I assumed everything would be okay. Until there was no heartbeat and we thought I had a blighted ovum. Seeing a heartbeat a week later, confirmed a viable pregnancy but I spent the rest of the first trimester knowing what it felt like to miscarry and worried I’d be feeling that way again. Though I told my family I was pregnant before my genetic testing, I asked them not to share the news until we got the results, because even though I had no risk factors, I knew it could still happen to me. When I learned Mabel had Down Syndrome, I decided to accept the diagnosis, but it wasn’t simply recognizing I’d be raising a child with special needs. It was also recognizing that I might not be- I was all too familiar with the risk of miscarriage and stillbirth with the diagnosis (ironically, I wasn’t thinking about neonatal loss). When we were told her kidneys weren’t working, she had no fluid and if she were even to be born alive, her lungs would likely be too small to sustain her life, I had some hope, because what mother doesn’t? But I also knew. I’ve told people myself when there is no fluid at early gestation that their baby will die. I knew.

Yes, sometimes knowledge is power. I was able to research and make my own educated and informed decisions about my body and my baby. But knowledge was also pain for me. I never enjoyed my pregnancy like I should have, like I wished I did; it was too tainted with worry.

I’m sure those of you out there who have had a pregnancy after loss also know that knowledge is pain. There are some of you who may have learned that lesson with your first pregnancy, like me.

Is knowledge power? Is knowledge pain? What is your experience?

Storytelling regret

I told Mabel’s story to a patient who was kind enough to ask- but had been rude to my staff and frankly too cavalier and too familiar with me. I will tell my daughter’s story as often as I can, but I didn’t like how she asked so nonchalantly “so, what happened to your baby?” It wasn’t nerves or awkwardness; I think it was her personality. “So you knew, then?” she asked matter-of-factly when I told her about the low fluid, the non functioning kidneys and potential for small lungs. “No, we didn’t know if she would live or die. No one could tell. We just had to wait and see when she was born.” I was annoyed that she seemed to imply that knowing ahead of time made it easier for me. It minimized all the grieving I did in my pregnancy and all the grieving I did (and am still doing) afterwards. Worst of all was her casualness about it all. I was left with the impression that she thought it could never happen to her. Newsflash- it could. It probably won’t, but it could.  For the first time, I felt some regret about sharing.

Have you ever shared your loved one’s story and regretted it afterwards?

Frozen

On a cold night in January I made Chris take me to see a movie in the theater. I was feeling badly- my mood was really low, which was not uncommon. When you’re told that the baby you’re carrying, your first child, a strongly desired baby, will likely die because her kidneys are broken, making low fluid and causing her lungs to be really small, sometimes your mood gets low. In was one of those days and I just couldn’t shake it. Chris asked me what would make me feel better and I told him going to the movies. It was a good idea too even in our hopeful times. Our baby’s death was not a certainty. It was possible she could live and if she did she would be medically complicated needing lots of care. If she survived, a night out at the movies would be impossible, so might as well do it while we could.

“Frozen. I want to see Frozen,” I told him.

“Are you sure?” he asked me. “There are likely going to be lots of kids there.”

I was sure- I wanted a movie that wasn’t real and I’ve always been a fan of kid movies. So after a near miss (the first movie theater we went to had lost power), Chris and I found ourselves walking carefully across an icy parking lot to the theater. He held my arm the elbow as I maneuvered my thirty two week belly around.

“I can’t fall!” I said to Chris almost jokingly. “We’re not monitoring!”

In pregnancy, if you fall, especially in the third trimester, it’s standard to be seen in the hospital for some monitoring of the baby afterwards- to make sure there are no contractions or signs of a placental abruption. We had had to make some difficult decisions regarding monitoring of our baby. With no fluid, there was a great risk for stillbirth. The baby’s heart rate could be monitored for signs of distress, but it’s an inexact science and most stillbirths in these circumstances happen practically in an instant. We had the option of being admitted from the diagnosis at 27 weeks and monitored 24/7 or we could do weekly (or any other chosen interval) monitoring or we could do no monitoring. Choosing monitoring meant we were willing to have an emergent c-section- potentially affecting my future fertility- and allowing our baby to be born prematurely. We made a highly researched and educated decision (met with many specialists) that our baby had the best chance of life if she was born after 34 weeks. We chose no monitoring until then, recognizing if she had distress before then we would lose her. Upon admission we would take no chances and I would be admitted for 24/7 monitoring. So at 32 weeks, if I fell, I would have to decide whether I’d want to break that plan and be monitored, risking early delivery if there was distress. On the flip side, if there was distress, we wouldn’t know about it and my baby could die inside me.

“No falling!” Chris assured me as he gripped my arm tighter. The ground glistened with black ice. We slipped and slided with several close calls but made it safely into the theater. I watched Frozen and was delighted.

When Mabel died, my family came for her services. I found a little joy in the innocence that was my niece. At 3 years old, she was rightly obsessed with Frozen. She would sing, somewhat unintelligibly and very much off key, the words to “Let it go” and dance around the living room. She built her very first snowman (a big deal for a kid who has only grown up in southern California) and named it “Snowloff.” In the weeks that followed, long after my little niece left, I found myself saving “Let it go” to my playlist. I’d sing along to the lyrics in my somewhat unintelligible and very much off key voice:

“Don’t let them in, don’t let them see

Be the good girl you always have to be

Conceal, don’t feel, don’t let them know!”

A perfect anthem for my grief.

This week I went clothes shopping. A secondary gain since my daughter died (I hate that term- is there a better one? An unintended benefit?) is that I’ve lost some weight. Extra time on my hands and needing an outlet for my anger and grief has brought me down below my pre-pregnancy weight. I know I am fortunate that this happened this time- in the past I’ve been a very emotional eater and gained when I was down. Now I’ve found that I don’t fit into my clothes. So I finally put the hopes of a future pregnancy aside and decided to invest into some clothes that fit. I needed to look somewhat professional in pants that weren’t super baggy. A quick trip to Kohl’s and I found some duds that fit the bill. As I was headed to the check out, a sweater caught my eye. I had wandered past the juniors department and just kept staring at this one sweater. I went up a size, figuring the juniors sizes would be ridiculously small and tried it on in front of the mirror. I was smitten.

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I like warm hugs

Chris rolled his eyes when I showed it to him at home. He said “o-kaa-ay” in that two tone mild sarcasm when I put it on to wear it out to the movies (now with no baby, we have the freedom to do so whenever we want). But I told him in the car how when I wear this sweater I think of Mabel- pregnant with her skating across the theater parking lot, my niece singing it before we went to Mabel’s wake and the lyrics of it’s main song that was the anthem to my grief. He held my hand proudly in the theater afterwards.

Mabel has her carrots, but she also has Frozen. I know I’m not alone in these comforts- there are Hugo’s stars and Gideon blue.

Do you have something you wear that makes you think of your baby?  

Day 27: Express

36+2

Today I have been without Mabel more days than I had been with her. For 36 weeks an 1 day she was safe. Despite the low fluid, my body nourished her, grew her and comforted her. All her needs were met and she wanted for nothing. She was safe. She didn’t need kidneys or lungs- my placenta did all their work for her. Her clubbed feet fit nice and snugly in my uterus. The holes in her heart made no difference- just added to the flow. Her extra chromosome was invisible inside me. I would have kept her in longer if I could. A few days before labor I asked if we could push out my induction for two more weeks and was thrilled and relieved when my high risk doctor and midwives thought it was a good plan. Mabel thought differently. She decided at 36 weeks that she her time inside me was up. I like to think that had she stayed inside longer, she might have died or had such distress I would need a c-section, and so she chose to come on her own so that I could meet her alive and have the vaginal birth I had hoped her.

last photo of me, pregnant at 36 weeks and 1 day, moments before Mabel and I became two separate beings.

last photo of me, pregnant at 36 weeks and 1 day, moments before Mabel and I became two separate beings.

Today is 36 weeks and 2 days since that day. She has been out longer than she has been in. In a few more days she’ll have been buried, in the dark of the earth, longer than she had been snuggled in the dark of my womb.

Her memory fades with time. Sometimes it’s hard to believe that she was real- that this really happened. Holy sh*t, I had a baby. I was a mother. My daughter died. I don’t remember what it felt like to be big and pregnant except for the random phantom kicks I still get. They are sparse and an awkward reminder because my baby had no fluid, so she wasn’t the biggest kicker. My pregnancy almost feels invalidated by her death. No one will ask me about my experiences when they are pregnant for the first time. No one will seek my advice. No one will ask for baby clothes hand me downs. And then they’ll have their babies and I ‘ll be even more useless, because though I had a baby I know nothing of parenting a live child- unless of course someone wants advice about taking their baby off life support.  I know a few things about that.

I thought I would do something to mark the day I turned 36 weeks and 1 day without Mabel, but the day came and went. It feels like my due date felt- an end to something that I don’t want to end.

Today I’m sad that the time I will be without my daughter will continue to grow longer and longer but my time with my daughter will forever be shorter.

#CaptureYourGrief

The High Chair

I’ve always been a fan of yard sales. Apparently what you call them hints at where you were raised- yard sale, tag sales, garage sale. I have memories of going with my dad to yard sales- once excitedly finding a Mr. Potato Head! We would hit up the annual town fundraiser, sometimes filling up a garbage bag and paying by the pound. Out of college, I hit up craigslist and estate sales to help furnish our first apartment. The habit continued into grad school and even when I was making a decent salary in my first job, I still was drawn to the yard sales. I often would pick up furniture left out for free on the side of the road, so I am no stranger to other people’s discardings.

After we had our big ultrasounds- the anatomy scan and the heart ultrasound- the ones that told us Mabel didn’t have any of the typical birth defects tht often come with Down Syndrome, I finally felt comfortable enough to start buying some baby supplies. Chris tacked down some secondhand cloth diapers on Craigslist and we nabbed a bunch of those. We drove an hour to buy the carseat we wanted from another ad on Craigslist. We made a trip to try out rockers at Babies-R-Us. We started a registry on Amazon. But when Chris came home one day with a high chair he picked up off the side of the road in our well-to-do town, I couldn’t find my usual warmth for this secondhand find.

Chris was confused. “We’ll bleach it,” he said, knowing my affinity for the cleaning product might sway me. I had already narrowed down the high chair I wanted, looking at reviews and prices. I think in my head I wanted to pick out the high chair special, not get whatever we could find. I agreed to hang on to it, figuring I’d eventually sway him into getting a new one. Until we deep cleaned it, it sat in the basement.

A few weeks later we were given the news that we might not need that high chair. The low fluid diagnosis at 27 weeks did not bode well for our baby and so we absorbed the words of the doctors when they said she might die.  Her kidneys weren’t working and the resulting low fluid would make her lungs small- perhaps too small to support her.  We stopped buying baby supplies. I cancelled my baby shower. We hid our registry. The high chair got moved to the basement.

A few months later, Chris packed up all the baby stuff and hid they in the attic, so I wouldn’t see the painful reminders of my dead baby. The high chair, though, stayed in the basement, tucked deep into the utility room so I wouldn’t cross its path when I did laundry.

Chris and I had a day off this week and ended up using it to simply do housework we had been avoiding. One task we crossed off the list was bringing the big pile of clothes and housewares to Goodwill. I threw the highchair into the car. I wasn’t fond of it before, but now I resented it, a symbol of what I did not get to have. Chris relented and we schlepped everything off to Goodwill. After unloading the bags and boxes, the highchair was the last item he brought to the storefront. He returned to the car with it in hand.

“They don’t take baby stuff.”

So we still have the highchair. I know of a few places that will likely take it, but they will take some extra coordination and trips.   We might just find a dumpster and ditch it, which we both hate the idea of because it’s in fine shape and there are people who would gladly take it.

I now hate that high chair. It’s haunting me.

What haunts you?

I visited the hospital

“I’m going to get three dozen,” I said to Chris as we drove to our favorite donut place. “It’s going to be a little pricey, but it’s for the people who took care of our baby.” He nodded in agreement.

We were on our way to the hospital, my first time back since Mabel. Each month after her death I had something big to do. March I had to be home by myself. April I was supposed to go back to work (I didn’t). May was mother’s day and the birth of two new babies in my family. June I actually went back to work. July I started seeing prenatal patients and saw my newly born nephew for the first time. Now it was August and my plan was to go to the hospital, to simply be there. To sit in each of the rooms I was with her- the room I was pregnant in, the room I labored in, the room I birthed her in, the room she lived in and the room she died in. Step one for getting back to being a full scope midwife.

I told Chris on the ride in that I was nervous. He patted my thigh, as he usually does when he’s trying to reassure me. “I’m nervous about how I’ll feel- sad, angry. But I’m also nervous that I won’t cry.” I felt like I was setting the stage for how things were supposed to be. I’m supposed to go to the hospital and feel all sad, have a good cry and then the scariness of the building would melt away and all would be well. But I’ve learned that there is no set way to grieve, so I didn’t know how I would react. I was afraid that if I didn’t cry people would think I’m better- I’m over her.

As we approached the hospital, I felt shaky, as the familiar tightness in my chest that I have come to know as anxiety, took hold. Slow breaths and Chris’s warm hand on mine, helped calm me. My ID wouldn’t let me into my normal parking garage, so I had to ask the car behind me to back up so I could do the same. The embarrassment acted as a little distraction as I found a spot on the street. We entered the children’s hospital through a large revolving door and I noticed a decoration at the center- a bunny made out of grass and two carrots laying next to it. Had I been able to park in my normal garage, we would have missed this display all together, going in a separate entrance. I took this as a good sign.

The Carrots in the revolving door

The Carrots in the revolving door

When the elevator doors opened on the fourth floor, I stepped into the hallway. I froze, unable to go forward and so I surrendered myself to my tears. When I finally was ready to go on, we passed professional photos on the wall of smiling children- all successful graduates of the NICU. Under their faces, was listed their gestational age and reason for needing intensive care. Brian- 27 weeks- omphalocele. Mara, Jenna and Samuel- 32 weeks- triplets. There was no photo of Mabel- 36 weeks- Down Syndrome, dysplastic kidneys and pulmonary hypoplasia.

I swiped into the Labor & Birth unit and passed more photos, this time of pregnant women and smiling babies. I remembered sitting in the charting room when I was 24 weeks pregnant. Another doctor was commenting to me about those photos, which were a new addition to the floor. “You know, we are a high risk hospital and many of our babies end up in the NICU. It’s not a good representation of our population, all these healthy, normal looking babies.” I was nodding in agreement, when her face froze, realizing what she had done. “Oh, I am so sorry. I wasn’t even thinking of you.” She knew my baby had Down Syndrome. I appreciated her honesty.

I walked by the photos, thinking again how Mabel’s face was absent. There wasn’t even a face like hers. As I approached the front desk, I was greeted with smiles from some of the nurses. One gave me a big hug and said “It’s going to be ok. It’s going to be good.” More tears found there way out. I embraced another nurse and thanked her for the cards she had sent. I had received countless cards after Mabel died, but she had been one of the few people to send a card when Mabel was diagnosed with low fluid. Once hugs were exchanged, I said “I brought donuts,” which brought laughter to the group.

After relinquishing one of the dozens of donuts, we headed to 469- my labor room. We closed the door and I burst into tears. The last time I had been in this room, Mabel was alive. I cried looking at the bed I knelt on through my contractions. I cried looking at the shower I tried in an attempt to ease the pains of labor. I looked at the infant warmer and imagined all the babies I had placed on it in the past. I tried to imagine doing it again- being a midwife in this room, hearing the satisfying cries of new life, helping a couple become a family. I cried at the thought of holding babies and being part of these happy moments. I cried at the thought of helping people have what I didn’t. “I hate it here,” I said to Chris. I pulled up the youtube video I had made and we started watching it on my phone. I wanted to remember some of the good things. As we watched, my tears dried up and we heard knocks on the door. One of the midwives I work with, one of my labor nurses for Mabel and one of my midwives joined us. They gathered around me and watched the rest of the video. I could hear sniffles and soon a box of tissues was found. I remained dry-eyed. The video makes me happy, though it makes others sad.

My labor room

My labor room

When it was done, I was ready to move on to the NICU. My midwife had checked to see if Caroline’s room was free. It’s the space families can use when they need a place for privacy. “It’s not always used for bad news,” the neonatologist had told us on the tour, when I had asked him where can we go if our baby is dying. Today the room had a sign taped to the front, saying “reserved for the XX family.” My midwife had checked and we could use it for a few moments while the family was out. I wondered what bad news the XX family was dealing with today.

The furniture had been rearranged. The space was small, 6 x 10 feet maybe and it had just enough room for a small couch and two chairs. Today the couch and chairs were reversed, each occupying the space the other had been in when we were there with Mabel. I didn’t like it, the furniture rearrangement, and I said so. Chris and I sat on the couch; it was the couch were we held Mabel as she died, the couch where I put her on my lap so I could see all of her for the first time.

Caroline's room

Caroline’s room

“I don’t feel her here,” I said.

“I can, a little,” Chris replied.

“I don’t.”

But I then went on to tell my midwife about the bunny and carrots in the revolving door. We talked about how my ID didn’t work and she said I can’t take it as a sign that I shouldn’t be back. She had a problem with hers not so long ago. That brought us into a conversation about work and me being back delivering babies. It’s a conversation I don’t like and I got a little upset, so it didn’t last long.

Not wanting to take any more time away from the XX family, we left Caroline’s room and found the charting room to drop off our second dozen. The elevators then took us to the maternal special care floor. Three nurses were working there, two of them had cared for me while I was in house. I dropped off the remaining dozen donuts and headed to 1038, my room on the floor.

This was the place I was happiest in pregnancy. Once I was admitted and survived my first twenty-four hours, I realized that my baby was likely going to born alive. She was safe here- monitoring all the time and the burden of worrying about her well being wasn’t mine. The room looked more spacious, without the weeks worth of belongings I had brought with me and without the cot they had brought in for Chris. Their was an empty plastic basinet against the wall, waiting to be filled by a new baby. My baby never saw a basinet like that one. She only knew the warmth of a NICU isolette and the warmth of my skin.

my maternal special care room.  I was happiest here.

my maternal special care room. I was happiest here.

I looked out the window and noted how it looks different in the summer. My last view from the point showed streets covered in snow. My midwife joined us as we were looking outside. She mentioned how in the parking lot below us she had recently seen a jazz band at the farmer’s market that sets up there on Saturdays. The parking lot was outside the city’s mental hospital and Chris commented on how it was an odd place for a farmer’s market. “Look at that sign!” I pointed to a white banner hung up on the wall of the mental hospital that lined the parking lot. It advertised the farmer’s market and had a picture of carrots on it. There she was again. I still couldn’t feel her there, but she was making herself known.

If you look closely, you can see carrots on the left side of the white sign on the building.

If you look closely, you can see carrots on the left side of the white sign on the building.

As we left the hospital, the elevator doors opened onto the third floor. Thinking it was my stop, I started to step out. I paused realizing quickly I was getting off prematurely, when I almost bumped into a young woman, a teenager in fact, crying right there in front of the doors. She saw us and walked away. A hour before, I was her. A woman standing in front of the elevator doors, delaying my journey to retrace the last days of my daughter. I had cried tears for the baby I had lost and the memories I was about to face. I saw her crying on the third floor- I’m unsure what kind of floor it is- and wondered whom she was crying for. I turned to Chris and said, “I’m not the only one who cries by the elevators.”

Conversations about Amniotic Fluid

“Can I ask you a clinical question?” She was a nurse practitioner and 30-something weeks pregnant.

“Sure.” We were done reviewing her labs, discussing childbirth education and listening to the baby.

“How much amniotic fluid is enough?”

I felt a jolt that made my heart beat faster and made me sit up straighter. Did she know? From 27 weeks onward, all I could think about was amniotic fluid. Make more, baby! I wanted my baby to have more than the 1.2cm they saw at that routine ultrasound.

No, she couldn’t know. She had just had an ultrasound the week before, maybe she was curious about her own fluid then.

“Well, it depends on the gestational age,” I said calmly. “At term we like it between 5 and 25. Amniotic fluid is very important. I know a few things about it.” I learned the hard way. I can tell you this: 1.2 is bad. Very bad. Babies need fluid to grow, to develop their lungs. When the fluid is too low, babies can die. Mine did. “Yours was 18, perfectly midrange.” What I would have done for 18!!

I was brought back to January, when I was still pregnant with Mabel. I had patient who had twins. She was due the day before me. The ultrasound in our office showed that her babies had low fluid at thirty-two weeks pregnant. “What happens if there is low fluid?” she had asked me. I told her how fluid is needed to help their lungs develop. The good news for her is that if this low fluid was real (we were going to get a specialist ultrasound to confirm), she was late in pregnancy and so the babies had had a fair amount of time to develop their lungs. The follow up ultrasound showed good fluid. It was a one-day fluke for her. She had her babies and they lived.

My patient in front of me today went on to explain that her cousin is pregnant, due within a few week of herself. They often compare notes, checking with each other to see who has what going on. Amniotic fluid had been part of that conversation.

I wanted to tell her everything I knew about fluid and why I knew so much. But that would have entailed the words “my baby died.” If someone asked, I would tell; however if no one asked, I would not volunteer the info. That kind of information should only enter the patient room if invited. Otherwise I feel like I’m saying Look at me! Look at me! My baby died! Nothing but awkwardness would follow. And the visit was not about me- it was about the patient. So I left Mabel out of it unless she was asked about.

She seemed satisfied with my answer. The dangers of oligohydramnios danced through my head, but never left my mouth. She left her appointment without ever knowing how much that simple clinical questions stirred me.