Will my baby live?

When I got that news that Mabel had low fluid, I truly understood that the prognosis was bad, but it was hard to really wrap my head around the idea that she might actually die. Part of the difficulty was that no one would actually say she was going to die. Obstetrics would hint, very strongly at it, but couldn’t tell me with certainty. Pediatric specialists wouldn’t comment at all- they all simply said we’d have to see when she came out.

At one point we met with a neonatologist that was finally a bit helpful in that respect. I had been getting weekly ultrasounds for several weeks when we saw him- had had one that day even, which at that point had shown anhydramnios, or no fluid at all. When he heard that, his expression became very serious. He too couldn’t tell us for sure our baby would die, but he was able to get across the point that he was not optimistic for our child. It’s possible he told me nothing new, and after several weeks I was finally able to really hear someone tell me bad news. But I think it was also helpful that he dealt with babies like Mabel. Before him, those giving me the dire prognosis were in OB- they didn’t deal with the baby when she came out, so I didn’t give them as much credit as I should have.

Despite my better understanding of her poor chances, I still remained hopeful. Perhaps it would have been easier if someone could have just told me she would die- her condition was incompatible with life. Then I might have reframed my pregnancy differently.

Later, when I was hospitalized, my midwives came by daily to check in on me. I had many visitors, and everyone tried to remain upbeat. I was pretty positive myself, finally feeling “safe” on continuous monitoring. But I had my moments too- I often just wished I knew what was going to happen (so I could prepare- I thought.)

One day when one of my midwives was visiting, we were having a more serious conversation- about the what ifs. Of all my care team, I talked to her most about the what ifs- what if my baby died? How do I be a midwife? How do I answer when asked if I have kids? She had given me the book “An Exact Replica of a Figment of my Imagination” that just felt so powerful and helpful at the time. For some reason, I could talk to her most easily about the hard stuff. Maybe because others would say- “don’t think like that!” or “no! Miracles happen! Babies surprise us!” or “you don’t know what’s going to happen, why plan for the worst?” But she wouldn’t. I suppose she was the perfect example of empathy. She would stop and really think about what it must be like to be facing such an unknown reality. On one of our visits in the hospital, I asked her “Can I ask you something honestly? Do you think my baby is going to live?”

“No,” she said softly.

And at that time, it was helpful. Partly because I had been asking- not simply being told. Partly because it was her- she wasn’t trying to get me to understand, she was simply imagining it for herself.

I recently saw her for a concern of mine- one that got me super nervous.   Leading up to my appointment I was calm, pushing away bad thoughts- but once I got there, I couldn’t hold back the tears. At the end of the visit, one she basically spent reassuring me, I stopped her and said,

“When I was pregnant with Mabel, I asked you if you thought she would live. You were honest with me. That was really important to me. Today, what do you think- will I be ok??”

“Yes,” she said softly, in that same tone of voice she used with Mabel.

And I believe her.

Do you have someone you trust to tell you the truth? Someone you can hear the truth from? Is there someone you look to for reassurance that everything will be ok?

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Alive

I recently reconnected with an old friend/colleague who had moved away. She had learned of Mabel and her story from some mutual friends and called me. Her message seemed urgent and when we finally were able to link up by phone, I understood her urgency. She too had lost a baby. I had known her for many years and knew of her two living adult children, but I didn’t know that there was a child that came before. She told her story; I told mine. Thirty years and very different circumstances separated our children, but some of the emotions were the same.

She relayed a story about one of her living children, a daughter in her 20s who is trying to find herself, her career. Her daughter asked her, “Mom, growing up, what did you want for me? What did you want me to be?”

In her head the answer was clear: “Alive! All I wanted was for you to be alive!” It was not the answer she gave- she spoke of happiness and fulfillment, but her thoughts are so true of those who have lost a child.

What do I want for any future children? I used to think about how I wanted them to go to good colleges, for them to have good friends, for them to be kind, compassionate children. Then I was told Mabel would have Down Syndrome and realized a good college was unimportant. I focused more on hoping she would meet other kind and compassionate kids who would befriend her. I had no doubt that she herself would be kind. I secretly hoped she would still excel in her own way- she was the daughter of two well accomplished adults who would teach and love her in all sorts of ways. Then I was told Mabel would be sick- very sick- and she might not live. She might not live through pregnancy even. I didn’t know what to hope for- hope that she was born alive and we would be faced with all sorts of difficult decisions, worrying about our child suffering or hope that she died in side of me, where she only knew the comfort of my womb, but I”d never hear her cry. I think I ultimately hoped she would be born alive and we would take the decisions as they came. I hoped she would defy the odds, hoped that the doctors were wrong, hoped that she would live. Not just be born alive, but actually live.

I was lucky. Mabel was born alive. She lived- six short hours, but she lived. In my grief, I try to remember to be grateful. I recognize I am among the fortunate in the babyloss community, if there is such a thing. My baby lived. Barely, shortly and sometimes even suffering- but she lived. I hope that she did not suffer long and I am grateful that she died in my arms.  Not every parent can say that- many are separated from their child when they die.  Many children suffer longer than Mabel.

What a weird world I live in to be grateful my baby lived a whole six hours.

Regardless of whether our babies lived only inside of us, lived for a few hours, a few days, a few months, regardless of where and how long they lived, we all had the same hope for our children and my friend put it well. We hope that they are alive.

How did your hopes for your child/children (living or gone) change with your loss?

Sunday Synopsis

Two Friends with Down Syndrome Kickstarter: This is beyond awesome!  Try not to fall in love with these kids, I dare you!  The best part is what you’re gifted when you pledge.

Our Mommy Problem. This article was posted by another blog I follow and felt the urge to comment.  Part of me wanted to be bitter and say, “at least people recognize you as a mom!” but I knew that wasn’t fair or productive.  I was compelled to comment, though and so I wrote something else.  I’d be curious what some of you moms think- those with living children and those without.   Here’s my comment: “think this article was well written- I appreciated how it seemed to tackle an issue that many women face (how to integrate the mom identity into her other identities and not let it take over) without being whiny (I have no patience for whiny). To throw another perspective in the boat- I adore being addressed as mom. It is a part of my identity that people don’t see because i don’t have a living child to prove it. But being called “mom” or better yet “Mabel’s mom” is like Christmas to me. And I know of many people who would do anything for that title but life circumstance hasn’t given them the chance. I comment not in any way to say that women shouldn’t complain about being called mom by certain people- the comment in the bar about mommies night out irked me too!- but I wouldn’t want people to stop using the term either- I’m sure the woman with a child after years of infertility might still glow at even an insensitive use of the term. I think this article has made me more mindful of how I use the moniker mom.”  

Who Has it Worse? This hit home hard for me.  No one has said it out loud so much, but I often feel like people think it’s easier to know ahead of time.  This article does a good job of saying it’s not.  It’s not easier to know and it’s not easier to not know.  Both are hard.  Both suck.

Have you read anything that has really hit home this week?  Any thoughts on these articles?

 

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 26: Healing Ritual

I have lots of healing to do.  Too much anger and bitterness.  I work with my therapist several times a month on such things.  Before pregnancy I worked with her on my anxiety and some compulsions I had and then in pregnancy she worked with me on my fear of miscarriage and stillbirth and the anxiety around the unknown and poor prognosis my baby was given.  Sometimes we simply did talk therapy and sometimes she worked with me on techniques to deal with my anxiety.  What do you do when your anxiety is justified?  In pregnancy, mine was.  We worked on distraction- it was the best tool I had when things got bad.

There is no set ritual I have, especially nothing I haven’t already mentioned- exercise, puppy, puzzles, etc.  My ritual differs everyday.  My ritual is distraction.

Today my distraction was a book group outing to the farm.  One of our members moved to a quiet corner of the state and we visited her new house (old farm house) and met her new husband and acquired furry family.

#CaptureYourGrief

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Day 23: Inspiration

Midwifery is not just my job, it’s my lifestyle.  I often ask people “so, what do you do?” as a way of small talk.  I recognize that not everyone puts as much weight on this question as I do.  I have been spoiled- once I decided on my career and completed my training to start it, i found myself in a job that was fulfilling.  I get to help change people’s lives- whether it be welcoming their new baby into the world or putting in their IUD so they don’t end up with an unintended pregnancy.

Having an emotionally challenging pregnancy- first accepting the difficult diagnosis of Down Syndrome and then living with the poor prognosis that oligohydramnios  gave at 27 weeks, my view of pregnancy has changed.  Laboring with a baby that I very much wanted to keep inside me, knowing that her birth might also be her death, has changed my view of childbirth.  Helping women in their gyn life- wanting to get pregnant, wanting to avoid pregnancy- it’s all still assisting them in their childbearing life.

Mabel has made my work painful.  My once career-lifestyle has turned into just a job.  I have my fulfilling moments but they are balanced by painful ones.  Mabel has inspired me to look beyond midwifery, to realize that there might be other things I could do.  I don’t know what they are or if i’ll do them.  This inspiration might be temporary, but for now, it gets me out of bed in the morning.

#CaptureYourGrief

I don't know what color mine is yet, but I bet it's purple!

I don’t know what color mine is yet, but I bet it’s purple!

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?