That’s My Story and I’m Sticking To It

In my 20s, I attended a fair number of baby showers and pregnancy/childbirth-centric events.  It’s like a bad take-off of the Jane Austen line, “It is a truth universally acknowledged…”…that if you are a married woman in your 20s, you are interested in conceiving/pregnancy/birth.  As someone who was at best ambivalent about having babies (oh, the irony) at the time and more focused on going back to school, I found this emphasis frustrating.

When I arrived at 30, suddenly in a tearing hurry to have babies and getting into increasingly expensive, painful interventions that seemed to fail at every turn, the amount of social pressure turned into something far darker.  While there are areas of the US where women in their 30s having first babies is the norm, where I live, I was one of the oldest people in my peer group married with no kids.  Most of my friends have older kids, including a kid who is a teenager currently.

In the throes of infertility, I quit going to baby showers.  I stayed out of heavily female spaces because it felt like pregnancy/childbirth stories came up a surprising amount as a bonding activity.  I figured one day I’d get wherever “there” was to feel emotionally secure enough to start attending again.

I had the kids.  And then something strange happened: I still don’t belong.  Not really.

There’s more room for sharing of “less than optimal” experiences now than perhaps there once was, but there’s still a pretty heavy social price for relating certain parts of stories.  I’ve personally primarily experienced this in regards to miscarriages/pre-viable PPROM/NICU – so that’s what I’m writing about here – but I also know this happens in some very difficult ways in the infertility community as well for people for whom treatment doesn’t work or adoption doesn’t happen (because this isn’t my story to tell, here is an excellent blog post on that subject, as well as here).

The first time I naively waded into a discussion after my older daughter was born, I simply spoke part of the truth: that I’d been in the hospital for quite some time after my water broke at 21 weeks, the doctors thought the baby wouldn’t make it, I somehow stayed pregnant until 28w4d, and E was born, spent awhile in the NICU, and was now doing pretty well.  Never mentioned the infertility/IVF/miscarriages or the messiness of the subchorionic hematoma/hemorrhages.  I actually watched someone’s mouth drop open.  People weren’t sure what to say.  There was some shuffling and looking down and the subject got changed.  It wasn’t the last time this happened.  Eventually, I started being a lot quieter during these conversations.

“It’s like I’m Stephen King giving a speech at the romance writer’s convention,” I once quipped to Arthur.  I’ve also heard more than once complaints about how people love to tell expectant women the worst stories about infertility/pregnancy/childbirth and scare them.

Obviously, there’s an element of knowing your audience here and being polite or sensitive.  I don’t tell anxious pregnant women my story because of this, because they’ve got enough concerns going on.  There are times that people can’t handle certain stories and I get that.

But other times, there’s an element of silencing.  Stories that are too uncomfortable and too taboo to tell out loud.

As I was reading Sarah DiGregorio’s book on prematurity Early, a passage helped crystallize the vague sense of not-belonging I’ve felt at times: “I also didn’t want to be the bearer of dark information, and I couldn’t imagine how I would participate in ‘normal’ conversations about my baby.”  DiGregorio also notes that “The emphasis on ‘natural’ birth that is meant to be empowering can be painful for those of us who needed every unnatural intervention to get our babies (and/or ourselves) out alive.”

I hear that.

I know that I’m (thank goodness, as I wouldn’t wish this on anyone else) an extreme outlier to plenty of statistics.  Of people who struggle with infertility,less than 5% go on to use IVF according to the ASRM.  Subchorionic hematomas are one of the most common reasons for first trimester bleeding, but very few are anywhere near as problematic as mine turned out.  Periviable PPROM affects only around 0.4% of pregnancies.  While preterm birth is an enormous problem in the US, only a little less than 2% of all births and around 16-20% of preterm births are before 32 weeks’ gestation.  In other words, my experiences are definitely not the norm. I don’t think policies or procedures or public health should be based around women like me.

But the suggestion that anyone can (fill in the blank: get pregnant without intervention, get pregnant with intervention, prevent a miscarriage, give birth without certain interventions, prevent a c-section, etc.) has the weird effect of sort of erasing people like me who don’t fit into those narratives that we are ultimately in control.  At times, I’ve found it also can have the effect of almost turning my story into a spooky fairy-tale, the thing that lurks in the shadow, the uncomfortable specter at the feast.

It’s a tricky thing: I want women to be empowered to seek answers and have authority over their own bodies, I want to see fertility treatments covered by insurance but not hailed as ‘the’ solution to infertility, I want as many miscarriages as possible prevented but women not blamed for miscarrying, I want to see unnecessary c-sections curtailed and more choices for women but also the understanding that c-sections can be life-saving preserved, I want better public health to help prevent as many pre-term births as possible and also better NICUs/treatments for those that happen anyway, I want campaigns of information that can help people avoid bad outcomes but don’t ‘other’ or shame those that don’t fit or have less than optimal outcomes anyway.  I did nothing wrong and yet so much went sideways for me.  There was no extra prenatal care or information that would have helped me, there were d*mn good reasons I had c-sections, and I get very tired indeed at times of explaining why (fill in the blank) would not have prevented this, the suspicion that I had to have done something to make this happen because surely these things are preventable?

I don’t know the answer here.  I don’t know how we make space and genuine understanding for all of these realities.  Telling stories is a starting place, I suppose.

Flipping The Script: Solidarity, not Pressure

microblog_mondays

When I was actively going through infertility and treatment, I heard a lot of stories.  I think everyone who goes through any sort of medical or social crisis hears stuff like this, you know, the “the doctors told them they’d never get pregnant/recover/etc., but they did!”  Sometimes this was helpful, particularly when related firsthand by the person the story had happened to, and often, those storytellers (whether in person or on blogs) would point out that while it had worked for them, they knew it wasn’t necessarily going to work that way for others.  It was solidarity, not inspiration.

Unfortunately, this wasn’t always the case.  Sometimes the stories were told more prescriptively (often by people that they hadn’t happened to), in the “if you just hang on, it will happen!” or “if you do _______, you’ll have a baby!”  Often, it occurred when I was already beating myself up and wondering what I could have done differently or when we were making painful decisions whether or not to continue treatment.  Those stories made me feel guilty, my decisions unaccepted, and left me second-guessing whether or not I’d done “enough”.

I’ve lurked this year for National Infertility Awareness Week, mostly because reading everyone else’s blog posts proved interesting and the topic – “Flip the Script” – is one I’ve had to mull over a bit.  Finally, though, I’ve realized the script I want to flip: be careful with stories.

A couple of years ago, I realized I’d become that cliché, walking urban legend of infertility stories: IVF works on the third embryo transfer after losses, rare, tragic complications, and out of that, a beautiful, healthy child.  Getting spontaneously pregnant with my second with no interventions or treatments only added to it.

I’m grateful for how things worked out.  But it is by the most bizarre circumstances and strange, against-the-odds events that I am where I am in life right now.  There is absolutely nothing that is able to be generalized to someone else struggling with infertility.

It’s not because of my hard work.  It’s not because of my persistence.  It’s not because I’m somehow “special”.  It’s not because of my good attitude or positive thinking (please, ask anyone in my life – I did not accept infertility/PCOS with any grace whatsoever, still dislike many pregnancy announcements/going to other people’s baby showers except under special circumstances, and hated pretty much every moment of treatment).  It’s not because of “baby dust”.  It’s not because I deserved it more than anyone else.

Truthfully, I have no idea why things worked out the way they did.  I’m grateful, but I really don’t have an answer to the “why/how”.  And I resent the idea that if things had not worked, I would have been any less worthy.

Basically, what I’m saying is this: I hope no one (including me) ever uses my story as a cudgel or as a prescription or as a “this could be you too if you just keep trying!”  Because anyone who is struggling with infertility, needs to take a break, or needs to consider their options (including resolving without children), does not need that pressure or guilt.  It’s great to tell our stories and truths.  But there’s a way to do it without generalizing out-of-the-ordinary happenings to others or giving false hope.

Let’s flip that script, straight up.

This post is a part of Microblog Mondays.  If you want to read more, please head over to Stirrup Queens!  Thanks to Mel for originating and hosting.  

48 Hours (Part 3)

Content Note: Pre-viable PPROM, high risk pregnancy

Read Part 1 and Disclaimer Here

Read Part 2 Here

I sat calmly as the ambulance pulled onto the highway, happily telling the paramedic sitting in the back with me how this was all quite unnecessary but, of course, I had to protect my baby, only the best for the baby. The cramps had stopped as far as I could tell, and I relaxed into the warm blanket the paramedic placed over me. I watched as the familiar landscape rolled by at a much faster clip than usual out the window in the back door of the truck.

Arthur later told me that he had pulled onto the highway just behind an ambulance. “I’m not sure how, but I knew it was you. Until I lost them at a light about twelve miles later, I just kept praying, don’t turn on the lights, don’t turn on the siren. I knew if they didn’t think they needed to hurry that fast with you, you were okay.”

We pulled into the ambulance bay at City South Hospital and again traversed through a busy ER to the elevators. The paramedics wheeled me through familiar halls, then to the childbirth center – a unit I hadn’t visited since I was in nursing school as a student on clinical rotation.

The bed was turned down and ready. As I scooted off the stretcher, I noted that there was now just a single, much smaller stain of red. The trickling had largely stopped during the trip between the two hospitals. Oh, good.

My mother-in-law walked in just as I was pulling up the covers, with Arthur close behind her. “How are you?” she exclaimed.

“Oh, I don’t know. They gave me some pain medicine, so I’m feeling really calm and sleepy right now. I’ve had a lot of fluid out, but I don’t think my water broke because the ultrasound showed normal fluid levels last night. I don’t know what I’ve been leaking, but I don’t think it’s amniotic fluid. It’s just more weirdness.”

I’d say this over and over again to pretty much anyone who walked into the room. The nurse who admitted me later told me that after I’d relayed this belief a couple of times to her, she actually talked to the doctors, wondering if anyone had told me straight out that nearly every healthcare professional who had looked at my situation was fairly certain my water had broken. Based on my symptoms and history, it was patently obvious. No one had said those exact words to me – or would until a bit later – allowing me to keep myself firmly in denial.

I was still getting settled when the admitting OB, Dr. H, walked into the room. He’d just done a delivery and happened to still be on the unit when I arrived, so he’d come to see what my situation was for himself. He introduced himself to us, then went and sat on the windowsill beside the bed. The weak January light filtered around him, giving him – to my pain medication filled mind – a sort of glow.

“There’s one thing I want to talk about right now, before the perinatologist, Dr. I comes in and things get emotional,” he told us. I listened as attentively as I could. He sounded extremely serious, and then he said some words I will never forget.

“We are going to save your life. You cannot argue with us about this. Your baby is still too small to survive, and we are not going to let you die if it comes to a decision between you and the baby. It’s not even a decision at this stage. We are going to save you.”

I could not understand why he was telling me this. I appreciated it, but surely the situation wasn’t quite that dire. I think if I’d been a little less out of it from the pain medication I would have been far more unnerved, but as it was, I figured he was simply being cautious. In any other pregnancy the bleeding and the fluid would probably indicate new problems, but mine had had so many odd, scary moments that had turned out all right, I doubted this was any different. It was a strange reversal from the early days of the pregnancy when every twinge or slight change in sensation made me certain that I’d miscarried again.

The rest of the afternoon is a hazy set of memories. One was explaining to my mother-in-law, who was clearly concerned by Dr. H’s speech, that I’d be more worried but the pain medicine was still making me “floaty”. Nurses came in and out, taking vitals, asking if I was still bleeding. I was, but so much less than before that I only changed my pads every couple of hours. The nurse who had admitted me was apparently the charge nurse and the floor was busy, so different nurses checked in to make sure I was still okay. I waved them off. I had no pain any more. The cramping had gone with the dose of Sta.dol.

I do remember the neonatologist coming in, a tall, slender woman with short dark hair and a charcoal long-sleeved tee-shirt tucked into navy blue scrub pants. When I’d arrived, one of the nurses had asked me if I wanted to talk to NICU about “options”. I figured it wouldn’t hurt. Clearly, we kept having these episodes and there was a chance our baby would come prematurely. Despite Dr. H’s earlier words and all my symptoms, I did not connect with the idea that the arrival might be imminent.

The neonatologist told us that at 21 weeks, the NICU staff would not intervene or try to resuscitate if the baby was born. I nodded. I knew that the age of viability was generally considered 24 weeks, so this made sense. She went on to tell us that while NICU attended all births that were 23 weeks’ gestation or further, sometimes it was very hard and the babies didn’t survive. She talked about babies that made it to NICU but then sometimes parents had to make the difficult decision to take the baby off the ventilator. I started to cry. I didn’t think we’d need to make that decision, but it scared me to hear her talk about it.

“I’m sorry,” I kept saying over and over, trying to control my tears. “I’m sorry, go on.” The neonatologist waited for me to calm down, and then told us that I really needed to stay pregnant until at least 25 weeks to have a good chance of a surviving baby. She asked if we were sure of our conception date. I told her we had done IVF, so yes, we were absolutely certain. We talked a little about that, she asked if we had any questions, and when we said no, she said good-bye and headed back to her world of miniature babies.

I dozed on and off. Towards the later afternoon, I asked for my cell phone and texted my boss that something was going on, I was upstairs in the childbirth center, and I wasn’t sure if I’d be in on Monday. I think Arthur and my mother-in-law got something to eat. I wasn’t allowed to eat yet because no one was sure if I was going to need some sort of procedure. Arthur’s father arrived. I was glad my in-laws had come. I was too tired and too out of it from the pain medication to carry on much of a conversation, and I knew Arthur needed support.

It wasn’t until about 4:30 in the afternoon when Dr. I, the perinatologist (or maternal-fetal-medicine specialist/MFM) came into our room, pulling an ultrasound machine behind him. Dr. H followed. By this time, the sky outside the window was darkening and the Sta.dol was finally wearing off. We’d met Dr. I a couple of times at his office, the last time at 19 weeks just after all of the clots from the SCH had come out. He had been cautiously optimistic at that point, telling us that if he hadn’t personally seen the amount of blood I’d had in my uterus at 15 weeks when we first saw him, he wouldn’t be concerned. However, he had seen it, and with that in mind, he told us that we weren’t out of the woods, but were closer to the edge of the forest.

I was excited to see that ultrasound machine. Now we’d be able to see the baby, know everything was okay, and hopefully go home. We sent my in-laws to the waiting area, and I looked around the room. Arthur, me, the two doctors, and the nurse still made the room quite full. The nurse tucked some towels around my abdomen, and squirted the ultrasound gel on from a little packet. Dr. I carefully moved the transducer over my belly, which I was shocked to notice wasn’t as swollen and rounded as it had been the night before.

We all stared at the screen. Where’s the baby? I wondered. There were just grey swirls, no dark areas that usually highlighted the tiny body easily. I looked up at Dr. I, who was watching the screen intently, and then I saw it: a tiny flashing light that I knew from so many ultrasounds was a heartbeat. My relief at seeing the heartbeat was quickly swallowed in the realization that I still couldn’t find the rest of the baby.

“There’s no amniotic fluid,” said Dr. I, pulling the transducer up, the scene fading off the screen. “There’s almost none I can see. I was going to do an amniocentesis to check for an infection, but at this point, that’s going to be nearly impossible. It would be a heroic effort, and it wouldn’t tell us enough.” He paused.

“No, no amniocentesis,” I managed, too stunned to think clearly as Dr. I began to spell out the impact of the devastating diagnosis.

“You’re ruptured. When this happens, most women go into labor within 24 to 48 hours. You are at a very high risk of infection if you don’t already have one that caused your water to break. We will not attempt to stop contractions if you go into labor. This means we won’t give you any drugs to slow or stop the contractions and I will not do a cerclage. If at any point you spike a fever or your blood counts show that you most likely have an infection, I’m going to induce you.”

He looked at me carefully. “How do you feel about continuing this pregnancy? You have medical reason to be induced now if that’s what you want.”

I gasped, and I think Arthur did too. I barely managed to shake my head and say “No.”

Dr. I continued: “In that case, I’m definitely not going to even consider an amniocentesis. But you need to understand that right now, I only have one patient: you. You will almost certainly go into labor within the next 48 hours, maybe a week. Your baby is too early and will die.”

In that moment, my mind flashed back to a class I’d taken for advanced life support measures in which the instructor told us how important it was that we never used euphemisms when dealing with families of patients who had died. “You have to use the word ‘died’,” the instructor said. “Otherwise, there are a lot of people who won’t or can’t accept what has just happened. The mind is powerful, and denial is a powerful coping mechanism. When you use the word ‘die’ or ‘died’, it’s unequivocal.”

That instructor was right, because as soon as Dr. I said those words, I started sobbing. No more denial was possible. I don’t even know that I’d call it ‘sobbing’ because it felt like someone was ripping a vital organ out. I’d always thought that was such a cliche, but it is the only way I can describe the sensation. I was somehow numb and yet simultaneously in the most terrible pain I’d ever felt. I gasped, wheezing, I was crying so hard.

“I’m so sorry. I’m so sorry, I know you need to tell us things,” I finally managed. “I’m so sorry.” It is the most emotionally exposed I’ve ever felt and I didn’t know how else to relay my discomfort except by apologizing over and over for being so visibly devastated. Dr. I seemed to understand as he looked down, checked his pager, and then told us he was going to step out, answer a page, and then come back in a few minutes to talk about what happened next. Dr. H and the nurse trailed behind him. The door clicked softly shut.

We sat there, stunned, both of us crying. “I need to call my parents,” I told Arthur. “How do I tell them this? I can’t tell them this.” He stared at me. I knew he would have the worse task of going out to that waiting room to tell his parents live. Arthur and I are both oldest children. Our baby was not only the first grandchild on both sides, but also the first great-grandchild for three sets of grandparents. This loss would ripple through so many people.

I focused on trying to get my breathing under control. Dr. I with Dr. H and the nurse in tow came back into the room. “Okay,” he said. “What questions do you have?”

“How soon will it happen? Is this a state where I’ll need a death certificate since I’m over 20 weeks? What do we do with the…remains?”

“Yes, you’ll need a death certificate,” Dr. H told us, “but there are lots of people here who will help you with those aspects later. As for when…I would expect before I go off shift on Sunday night.”

I directed the next question to Dr. I. “Have you ever seen any time that a rupture at this point resulted in a living baby?”

He sighed. “Twice. In 26 years. The one thing I will tell you is that if – if – you somehow manage to stay uninfected and pregnant, which is not going to happen, you made it with your membranes intact through a crucial period of lung development.”

We asked a few other questions I don’t remember, and then the doctors and nurse were gone. The room was silent. I picked up my phone and found myself texting my boss that I wouldn’t be in Monday, a brief explanation, and that I’d probably plan to take whatever FMLA I had left before coming back to work. It was far easier to type to a much less-affected party than to contemplate the next call I needed to make: my parents.

Arthur was supposed to start a new job Monday morning. As I was texting, he was calling the HR director to let them know that he needed to delay his start date. Thankfully, the HR director was wholly sympathetic and immediately told him that he could take as much time as he needed.

After that, we sat shell-shocked in an uncomfortable silence. Both of us knew it was time. Neither of us wanted to move. We had to tell our families.

48 Hours (Part 2)

Part 1 and Explanation/Disclaimer

“The ultrasound just showed that you have a subchorionic hematoma,” the nurse informed us when she reappeared about an hour later. “The amniotic fluid level was within normal limits, and I know you said you’ve had the SCH for quite awhile. The doctor said he still wants you to stay until he can actually check you over when he comes in, so let’s get you to a room where you can get a little bit of sleep.”

The nurse led us to a room across the hall. I was so relieved that based on the ultrasound clearly my amniotic fluid levels were normal and so tired that I barely registered the fact that I was being placed in a labor room. On my prior visits, I’d been in rooms all the way at the postpartum end of the hall. It’s a detail that stands out now for its significance, but denial had kicked back in and I happily made myself comfortable in the bed while Arthur stretched out on the couch.

The next several hours passed fitfully with the periodic rushes of fluid waking me over and over. Finally, at around 5:30 am, I stood up to go to the bathroom and change the soaker, turned on the light, and stared as deep crimson drips rolled down my thighs. I called for the nurse immediately, handing her the now blood-soaked cloth. The room was still darkened, but I briefly saw her expression change, then: “We’ll make sure we put this by the sink for the doctor to see. He should be in soon.”

“This is just the SCH, right?” I asked, desperately needing to hear that nothing was really wrong, not really. “I mean, I’ve had lots of bleeding throughout this pregnancy.”

“I don’t know,” the nurse said gently. “We’re going to have to see what the doctor says. Let me know if you have another pad like this. I’ll tell him he needs to come see you as soon as he gets here.”

“Are you okay?” Arthur mumbled from the couch as I climbed back into my bed.

“I think you need to cancel your doctor’s appointment as soon as the office opens,” I told him. “I don’t know what’s going on. I think it’s the stupid SCH acting up again. I can’t believe this. I thought it was done when all my clots came out a couple of weeks ago. And now it’s going to ruin the nice day we had planned. Maybe we can still do my bump shot when we go home.”

I lay silently, willing the ominous flow to stop, pleading with God to make it stop, to let my baby be okay, please. Please let the doctor get here. Please let it be something that he can fix. Please let this not be a big deal. Over and over and over I repeated this as though repetition might somehow bring it into being. Please.

I must have fallen asleep at some point as a brisk knock startled me and the nurse peered around the door to tell us that the doctor was reviewing my chart and would come in shortly. I sat up, blinking against the sudden influx of light, then carefully peeling the cloth pad between my legs away to check. Still bright red, still trickling out. I didn’t have time to consider what this meant, however, as I heard another knock and the doctor walked in. I held up my pad for him mutely.

“Hmm,” he said noncommittally as I proceeded to tell him what had happened and gestured to the laundry bag full of saturated pads and soiled sheets, showed him the pad by the sink. “Well, I think I’m going to go call the perinatologist. I’d like his opinion before we make any decisions.”

He left and I started crying almost uncontrollably. Something about the care with which he’d chosen his words terrified me. It confirmed what I already knew somewhere deep down: something was horrifically wrong. “If this is it…” I began, trying to get out words that I couldn’t grasp, couldn’t say but knew I needed to convey somehow to Arthur, “If this is it…oh God, how are we going to get through this?”

“Let’s wait until the doctor gets back,” Arthur said soothingly. “He just needs to talk to the specialist.” Realizing that Arthur still genuinely thought it was going to be okay, I pushed down my fear, stopped crying. Maybe I was overreacting.

The doctor returned. “I think we’re going to send you on to a bigger hospital,” he told me. “There’s nothing we can do for you here. Unless…” He paused. My eyes landed on the warmer in the corner, draped with blankets, awaiting a new arrival and suddenly I felt sick. My baby could be born today. And if that happens…no. No.

“Okay, so how would that work? Would we just drive there?”

“I think an ambulance would be best,” the doctor said gently. “I’ll just make a few phone calls.” He stepped out again, and again, I found myself on the brink of panic. I knew something that Arthur didn’t: the criteria for ambulance usage. If the doctor thought I needed to transfer by ambulance, it meant that he felt there was a significant risk that I would either hemorrhage dangerously or go into labor during the hour-long journey.

“I’m going to call my parents,” Arthur said. “They need to know where we’re going.”

“Yeah,” I agreed. “I’d better call mine too. Do you really think I need to go by ambulance? I mean, I think it would be okay if you drove me.” Denial slipped down around me, comforting and thick. I made a quick call to my mother’s cell, got her voicemail and left a message telling her to call me back.

The doctor came back one more time to let me know that the transfer was all set. “The north hospital is full, so we’re going to send you down to City South Hospital. You work there, right?” I confirmed this was correct, and he nodded. “Dr. H is admitting, and then the perinatologist will be in to see you once you arrive.”

“I know Dr. H,” I told him. “I think that sounds good.” Arthur agreed.

Before the doctor left the room, he noticed the NFL sweatshirt Arthur was wearing. We had a surreal conversation about Tom Brady’s deflated footballs and the upcoming Superbowl and whether or not the Colts really had gotten screwed in the playoffs. As the doctor headed out, my phone rang: my mother. “Something happened. They want me to go by ambulance to the city. I’ve been gushing fluid all night and now I’m bleeding again. I don’t think I need to go by ambulance, it’ll be expensive and I’ll be fine.” The nurse was back in the room now, IV supplies in her hand. I nodded at her that it was okay if she started looking for a vein and switched the phone to my other hand.

My mother spent most of the conversation talking me into going in the ambulance while the nurse – much to everyone’s surprise, I’m generally a tough stick – got my IV in on the first go. “I’m calling EMS,” the nurse said as I hung up the phone. “I don’t know how long it will take for them to come, but I’ll let you know when I find out.”

Meanwhile, Arthur had managed to get in touch with his mother, who, sensing something was awry, asked him if it would be okay if she left work and met us at City South Hospital. “Yes, I think that would be a good idea,” I said, surprised to hear the words. Surely nothing was that wrong to necessitate hurrying out of work.

“Plan to meet us there” said Arthur as he hung up.

“Since you can’t ride in the ambulance with me, I think you should go home and get some stuff. I want you to grab my kindle, maybe the ipad. Also some clothes. And…” I trailed off. “And can you find a shirt or something that looks okay? Like nice enough for photos? Just…just in case? Like one of my wrap sweaters that will still fit right now?” Tears ran down my face. “Why don’t you get a shower too? It will be a few minutes before EMS gets here and you know how this works. It’s a lot of ‘hurry up and wait’. Even if you get to the city a bit after me, it’ll still be awhile before the doctors come see us. You may as well clean up.”

Arthur agreed and stood up just as the nurse walked in to inform us that EMS would arrive within the next half-hour. He bent over, kissed me and was gone.

The next twenty minutes felt incredibly long. By myself, no need to put on a good face for Arthur, I found myself sobbing and sobbing. The achiness in my belly intensified. A horrible thought emerged: what if this is the beginning of labor? No. NO. I called the nurse. “I need something for pain, please. Now.”

“What kind of pain are you having?”

“I just feel achy. Crampy, really.”

Her face registered concern. I have no doubt that she knew what was most likely happening, but she simply told me very calmly “I’ll find out from the doctor what you can have, and we’ll get you something.”

Everything happened at once. The paramedics came in, bearing a stretcher and equipment bags. The nurse came back with the pain medicine. It all felt wholly unreal to me, as though I was watching from some great distance, not living the experience. I scooted over to the stretcher. The buckles of the safety belts clicked into place, the stretcher lifted as the paramedics prepared to wheel me out. The nurse injected the pain medicine into my IV. “This is Sta.dol,” she informed me. “Hopefully it will help.”

I remember how she patted my arm. “Good luck,” she whispered. “I hope it is nothing and we see you back here in May or June.” Then she was gone and the paramedics were wheeling me down the halls, through the emergency room into the cold, grey January morning. I shivered as they loaded me into the back of the ambulance.

48 Hours (Part 1)

When I was in the hospital, I read every story I could find about PPROM (preterm premature rupture of the membranes), particularly those who had ruptured around 20-23 weeks.  It helped to know I wasn’t the only one who had gone through this devastating situation.  Sadly, it’s far more common than I ever realized until it happened to me. 

Once my daughter was born, I tried not to think about that awful night and subsequent weekend when my water broke.  She was here and, against all odds, alive.  However, the memories kept surfacing, sometimes in upsetting ways.  Eventually, I started writing bits and pieces down until I had pages and pages of documents detailing my story of PPROM at 21 weeks pregnant.  It’s a long story, so I plan to break it into a number of posts. 

Everything I’ve written is as I recall to the very best of my knowledge.  I’ve chosen to put conversations in quotations, but all are based on my memory, not recordings or other documentation.  I’ve deliberately omitted my doctors’ actual names.  

The dark felt familiar and safe, the warm quilt and sheets tucked around me. I stretched a little, curling further into the bed, unsure of what had woken me. The baby kicked, tiny flutters I still could barely feel low in my belly. I closed my eyes, preparing to go back to sleep.

Suddenly, I felt a sticky, wet warmth trickling down onto my thigh. Sh*t. I rolled out of bed, glancing at the alarm clock my bedside table as I stood up.

1:19 am.

In the bathroom, I squinted against the bright lights at my pad. Oh, good. No new red blood. Maybe the baby kicked my bladder and I dribbled a little. I finished my business, changed the pad, and shuffled back to the bedroom, eager to go back to sleep.

Crawling back into bed, I thought about my brand new maternity clothes, still in their box in the living room. New pair of jeans, a couple of cute tops that I hadn’t ordered until I was almost 20 weeks and finally bursting out of every normal piece of clothing I owned. First bump shot in my new clothes in a few hours, I thought, excited. Sure, the pregnancy had been a rough one, but the subchorionic hematoma that had caused so much trouble was shrinking beautifully. I was finally settling into the idea that we’d have a baby in late May or early June.

I snuggled back into the sheets, trying to recapture the warmth. Arthur stirred next to me. The baby kicked again.

And then it happened.

No longer a little trickle, I felt wetness saturate the new pad almost instantly. I jumped out of bed, hoping to make it to the bathroom before I got what I presumed to be blood all over the sheets. No, no no! The SCH is supposed to be getting better! I lost all those clots! I haven’t had fresh bleeding in a week now!

In the bathroom, I stared down at the pad, uncomprehending. Sure, there was a brownish, old-blood tone to the fluid. But it wasn’t new blood as I had anticipated. It was far too clear, and I knew beyond a doubt this time that it wasn’t urine.

Arthur came in with a pair of fresh underwear for me. “What do you want to do?” Both of us knew something wasn’t right, but neither of us could voice what we feared.

“Let’s call the hospital,” I offered. “See what they have to say.”

The labor and delivery nurse who answered the phone told us to page the on-call OB. I had just hung up and was preparing to dial again when I felt another gush. “We need to go to the ER,” I told Arthur. “It just keeps happening and something’s not right.”

I remember putting on my black fleece sweatpants, pulling a long-sleeve t-shirt emblazoned with a 5K logo over my head, not even stopping to put on a bra. I figured we’d spend a few hours at the ER, get reassurance that everything was okay, and be home in time to grab a few hours of sleep before Arthur’s 8:30 am doctor appointment to discuss getting his whooping cough vaccine before the new baby arrived. We’d still get to take my bump shot and I’d get to wear my new clothes.

I grabbed my purse, barely sparing a glance around the familiar living room, not realizing that this was the last time I’d leave the place we had called home for nearly ten years. The night was crisp and cool, but not as terribly cold as I expected for late January. I sat on the towel I’d placed on the passenger seat of our car several weeks ago during my last trip to the ER, praying we’d make it to the hospital before another gush hit.

What strikes me now is how worried I was about making a mess in the car. I now recognize it as denial. My brain focused on what it could deal with at that moment, not the unimaginable. It was the beginning of a cycle I’d repeat countless times over the next fourteen hours: panic, fear, understanding, then going back to denial.

Arthur dropped me off at the ER doors and went to park the car. The ER staff had gotten to know my face and story over the many visits I’d made for bleeding during the pregnancy. I filled the registration clerk in on the latest development and signed paperwork. She consulted briefly with one of the ER nurses, made a phone call, and told me that they would triage me straight up to OB. I sat down and waited while they got a wheelchair and relayed the situation to OB, praying I wouldn’t have another gush and soak my sweatpants right there in the ER lobby.

Arthur hurried in just as tech came to wheel me up to the OB unit. The charge nurse put me in a small room beside a supply area, handing me a gown to change into. It was cozy, a soft bedside lamp illuminating the space as I pulled off my sweatpants and underwear and climbed onto the gurney. The nurse pressed gently on my belly with a sensor, looking for a heartbeat.

“Uh-oh,” I gasped as I felt another gush at the pressure. “It’s happening again,” I informed the nurse, pulling back the sheet, a large splotch of the dirty brown fluid on the heavy cloth soaker pad underneath my hips.

The nurse handed me a fresh cloth soaker and examined the wet one. “No fresh blood,” she noted. “It doesn’t look like amniotic fluid, that’s usually more clear. And it doesn’t smell like amniotic fluid either.”

“Is there some way you can check if it’s amniotic fluid? Like with the nitrazine paper or something?”

“We don’t use the paper anymore,” she informed me.

“So how do you know if it’s amniotic fluid?” I demanded. “I just need to know if it’s amniotic fluid, because then I can go home if it isn’t.”

She shook her head. “We don’t have a definitive way to test for that here,” she said. “You’re really early anyway, I don’t know if anything we did would answer that question for sure.”

I stared at her, feeling more fluid leaking out underneath me. “So what am I supposed to do?”

“Well, the doctor doesn’t want you to go home right now. He says he wants you to stay until he makes rounds in the morning, probably around 6:30 or 7 am – unless something else happens. Then he can see if things have stopped or changed.”

“I just need to know if I’ve ruptured!” I said shrilly. My mind raced, wondering if there was anywhere in town Arthur could go to get nitrazine paper so we could just check on our own. “I mean, I am gushing a lot of fluid here. I have no idea what it is, and I need to know. Can’t you understand? I’ve had so many issues with this pregnancy and the high-risk doctor told me that an infection related to the SCH could cause my water to break. I just need to know,” I repeated, trying not to cry, begging her internally to do something, anything to stop what was now a near constant trickle, the wet spot growing larger and larger.

The nurse finally told me that she’d call the doctor and see if there was anything else she could do for me. I closed my eyes, trying to rest and calm myself. It couldn’t possibly be good for the baby to be this worked up. Arthur slumped in the hard chair next to me. We waited.

“Doctor has ordered an ultrasound,” the nurse informed us when she came back in. “They can check your fluid levels and see if there’s anything obvious going on. After that, we’ll move you over to a room where you can get some sleep until the doctor comes in to see you.”

It was only about fifteen or twenty minutes until the ultrasound tech showed up, but it felt far longer.   The gushes and trickles were getting worse. “Can you grab me a new soaker pad from the cabinet over there?” I asked Arthur. “This one is really wet.” We switched the pads, putting the old one on the counter for the nurse to check whenever she came back. I felt panicked when I stared at the spread of fluid on it.

The ultrasound tech had seen us several times in ER and was familiar with our situation. I watched the screen as she scanned, the baby kicking and moving. She carefully measured the pockets of amniotic fluid, once, twice. “The only thing I can’t seem to get,” she noted, moving the probe over my belly, “is the head circumference. The baby’s head is really, really low. Right against your cervix.”

I barely even registered this comment. I was just relieved to see plenty of fluid pockets. I’d seen the numbers as she’d measured and with a quick calculation in my head, knew they had to be fairly normal or close to it. Even so, the fluid continued to pour out of me. By the end of the ultrasound, the soaker pad, the sheet under it, and the sheet covering the bottom half of my body all had ugly brown stains spreading over them. Arthur called for the nurse to come in and take a look.

The nurse shook her head as she stared at the mess. “I don’t know,” she said. “It doesn’t look like amniotic fluid, but…” she trailed off. She helped change the linens, and decided to go ahead and put a fetal monitoring transducer on me. “I don’t know if this will pick up. You’re so early yet, but I think it would be better if we kept an eye on things if possible.”

The transducer did pick up for quite a while. The baby’s heartbeat was strong, beautiful. The nurse came back briefly to tell us that it was taking a bit longer to get the ultrasound read by radiology than she’d expected, but as soon as she had results, she’d call them to the doctor and then let us know the plan. “That’s okay,” I said. “I mean, I think the people with urgent chest x-rays and traumas obviously need to get read first. I’m alright, I could tell my amniotic fluid was still there and the baby still has a good heartbeat. That’s what I needed to know.” The nurse looked at the strip printing out with the baby’s heartbeat, then told us it looked excellent, more like a term baby than a 21 week baby.

Reassured, I closed my eyes. Every time I nearly nodded off though, I felt the trickling or gushing sensation of fluid flowing out. Everything looked normal. Everything is okay. It’s just another weird thing with this pregnancy, I told myself over and over.

The Endings of Stories

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Spoiler alert for the book Deep Down Dark.  While most of what I’m about to talk about has actually been covered in the media at various times, if you didn’t see it or have forgotten and want to read the book with no spoilers, this post is going to have a few. 

When I was in the hospital, I read Deep Down Dark: The Untold Stories of 33 Men Buried in a Chilean Mine and the Miracle That Set Them Free. At the time, I needed a book engrossing enough to transport me out of my hospital room and most of all, have a happy ending. I found myself transfixed by Hector Tobar’s account of the miners’ 69 days underground and their dramatic rescue.

It’s really an incredible story. The thing that fascinates me most now, however, is not how the miners endured the horrifying conditions, the near starvation, or the triumphant moments as each man emerged from the rescue capsule. It’s the true ending, what happened once the media spotlight faded.

After the breathless media coverage, the fame, the money given to each of them, most of them went back to living essentially the way they were before the mine collapse. Several have even gone back to work as miners.

The humanities major in me isn’t very satisfied with this ending. In the US, there’s a strong cultural ideal surrounding redemption narratives, life-changing experiences, and being an entirely different – and better, improved – person after struggle or hardship, especially when the ending is as miraculous as with this particular story. I’m used to movies, memoirs, or novels that end this way. Reading how the men still had the problems they entered the mine that day with, how they picked up where they left off, doesn’t fit that narrative.

And yet.

It’s been a sort of comfort to realize that, having survived (on a much smaller scale) a difficult and life-changing experience and becoming one of those miracle stories, I still recognize myself. Not everything has changed despite a new home, new city, new job, new daughter. I’m still introverted, still more quick-tempered than I’d like to be, still pig-headed, still with many of the same issues and strengths I took with me to the hospital that January night. It doesn’t fit with what I’d consider the somehow less complicated, more media-friendly life-totally-transformed ending, but perhaps that’s one of the unsung miracles of human resilience: how often life goes on flowing stubbornly around all the rocks and falls in its path.

This post is part of Microblog Mondays.  If you want to read more posts or get in on the action, please go visit Mel over at Stirrup Queens.

Small Steps

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Okay, maybe a little longer than a “micro” blog post.  I started writing and discovered I had more to say than I’d realized.  Trigger warning for talking about my experiences with PPROM. 

The first weekend I was in the hospital after my water broke, among all the other tumultuous feelings that come with being told your child is almost certainly going to die, I was having some regrets. My pregnancy had been a disaster from such an early stage that we hadn’t bought anything for the baby. The nurses at the hospital had reassured me that they had clothing and items carefully put aside for situations like mine, but I felt bad that we hadn’t had enough courage to get even the most impractical, whimsical item to celebrate this baby. No onesies, no stuffed animals, no little books this time. I thought by not ordering the items I’d feel better but instead found myself terribly saddened at not having anything for my child.

I kept this to myself. It was too late, I thought. I couldn’t exactly leave the hospital dripping blood and amniotic fluid to go find something and since I’d been told I’d be in labor most likely within 48 hours ordering something wasn’t practical either. On Sunday night, however, I received a package. It had been over-night shipped on Friday afternoon when we had gotten the terrible prognosis and had actually arrived on Saturday, but had gone to the wrong unit initially.

The package contained eight beautiful hand-knitted baby washcloths that spelled out “Baby (our last name)” and a soft, handmade jungle-themed flannel receiving blanket. My aunt had made them for us when we’d told her we were pregnant and felt that despite the fact that our baby would almost certainly die, these items had been lovingly crafted for this baby. This baby deserved to get a present. It is among the kindest gestures I’ve ever received, the way she honored our baby as deeply loved and wanted in that unspeakable hour.

“When the baby comes,” I told Arthur, “we will wrap him or her in the blanket. Then I am going to keep the blanket. I am going to want something soft to hold that touched our baby in the next few months. We can use the washcloths to gently bathe the baby once we are ready to do that.” Nothing, of course, makes a situation where a baby is probably going to die okay. It did make me feel slightly better that I would have this gift, this blanket made especially for our baby that reminded me of how much our baby was loved.

E lived, much to everyone’s complete surprise and happiness.

The washcloths went to our new apartment and the blanket sat in E’s NICU room, but we generally used the hospital blankets that could easily get thrown in with the hospital linen when E soiled them. We hadn’t had a chance to acquire a washer and dryer yet, so I couldn’t take anything home to wash initially. I didn’t think about it much. Having a baby in NICU is busy and stressful.

When E finally came home the second time, my mother came out to help us with E, which we appreciated. One evening, E had spit up. We were changing her outfit, and realized we needed to get her neck and face wiped down. My mother came back a moment later with a damp cloth and started gently cleaning E with it.

It was one of those lovely hand-knitted washcloths.

I blanched. I almost stopped her. Those washcloths were special – special in a way I couldn’t put my finger on, certainly not fast enough to explain my reaction in a way that felt coherent. Instead, I took a deep breath and watched as she tenderly wiped away the mess, carefully cleaning out E’s neck folds and soft skin.

It occurred to me how I’d referred to E since the day she’d been conceived, more so once the bleeding started and especially after my water broke. If the baby lived, if she came home, if, if, if. I’d been saving these for that disaster.

It’s hard to explain the mentality to people outside the infertility and loss communities. I still marvel at the ability of many women to assume everything will go right with their pregnancies. It amazes me to watch people who can unconditionally connect with a pregnancy, who can ignore, reconcile, or don’t even see the specter of loss that always hovers in the corner of OB offices and hospital rooms. I don’t think it’s necessarily a bad thing to recognize that specter, but I wasn’t merely recognizing. I was living in thrall to it.

E is here. She is loved. She deserves to use these gifts that were always intended for her.

I went over and helped bathe my daughter.

Thanks to Mel for originating and sponsoring Microblog Mondays.  If you want to get in on the action, go visit her at Stirrup Queens!

She’s Here!

Announcing the birth of our beautiful daughter!

2 pounds, 8 ounces

13 inches long

March 15, 2015 at 9:13 in the morning

Everyone doing well so far – baby has not needed a ventilator, has good lung tissue (especially with the PPROM and oligohydramnios) and is being cared for in NICU.  It will be a long road, but she is surprising everyone with her feisty personality :).

THANK YOU for all  your thoughts and prayers and well wishes throughout – I wish there were some way to really express how much these mean to us!

Looking forward to sharing the story of her arrival!

The Waiting Game

28 weeks, 3 days. It’s incredible. No one, including Arthur or myself, thought we’d make it this far.

So far, baby shows good continued growth. For the last couple of weeks, I’ve had some pockets of amniotic fluid, even measuring 4.7 cm for my amniotic fluid index on my last official ultrasound. Baby hiccups and moves, and keeps rocking her heart monitoring sessions.

A few days ago, however, my white blood cell count showed a trend upwards. The reading, in and of itself, did not indicate infection, but the fact that the count was slowly and steadily starting to climb definitely bore watching.

Then I had my first round of recorded, mild contractions on the monitor two days ago. All the previous night, I’d been having a little bit of abdominal fullness and tightness, but it felt nothing like the “period cramps” feeling I’d been told to expect with the earliest stages of labor. I passed it off, especially when the monitor registered no contractions or uterine activity. That morning, however, the small, rounded hills were obvious on the monitor strip. The nurses tell me what I’m having is some uterine irritability rather than full-on contractions, but it’s new after weeks of no real measurable uterine activity.

It’s one of those things that could mean something or could mean nothing. By that afternoon, my uterine irritability had decreased markedly on the monitor and I’ve only had occasional, sporadic instances since. Plenty of normal pregnant women have periods of uterine irritability at this stage of pregnancy, so in and of itself, having those mild contractions on and off doesn’t mean labor is imminent. The white blood cell count went down, then back up to almost exactly where it had been the day before.

All of this is to say that the nurses and doctors are now watching very closely. For starters, pre-term labor isn’t like normal labor. It can progress far more quickly and come on far more suddenly than is usual for full-term labor. There is also the question of exactly what the white blood cell counts indicate and at what point the baby might be better off out than in due to the high risk of infection.

The good news, as I keep reminding myself, is that at 28+ weeks, we have a very decent shot. Even though it’s still horribly early, we are in a much, much better position than we were when my water broke at 21 weeks or at any point prior to this. If there is some sort of infection or other process starting, it is now better for the baby to come out than to try to buy more time and risk a septic baby or a baby that doesn’t make it to delivery. The baby’s heart looks strong. Or at least, these are the things I tell myself over and over again trying to stay as calm as possible.

The reality is: this is scary. I’d be extremely worried even if we were at the magical 34 weeks where I would be induced or C-sectioned automatically due to the PPROM. This is going to be a very premature baby. This is going to be a baby who had almost no fluid from week 21 on, and who could have serious lung issues. Emotionally, there is a part of me that feels that as long as I stay pregnant, the baby is okay. Intellectually, I know this isn’t true, because there’s any number of things from infection to cord compression to placental abruption that I’m at high risk to have happen as long as she’s in there. I think it stems from the fact that once that baby comes, we will get the ultimate answer to all our questions about her lung development and ability to survive.

I’m terrified that the answer won’t be the one I want to hear. It’s such an awful sense of powerlessness where the only thing I can do is keep doing what I’ve been doing: praying and hoping.  We have been so, so grateful for so many people thinking about and/or praying for us and this little baby.  Those words of encouragement really do make such a difference to us.

We’re walking on a very fine tightrope at this point. No one wants the baby born any earlier than she needs to be, but no one wants to mess around if there’s a chance of things going south. Obviously, if the baby’s heart monitor strip changes, my white blood cells go up dramatically, or I spike a fever, it’s go time. The issue is those less obvious signs that could mean problems or could mean nothing. It’s the dance we’re doing with my white blood cell count – not quite high enough to be a good indicator that infection has set in but high enough to cause concern – where the call to deliver or not deliver the baby is much trickier. Prior to this, the plan has always been to wait and see because the risks of prematurity outweighed the potential risk of leaving her in, but we’ve reached the tipping point where getting her out may become the better option.

That’s changed the balance. It reminds me of the first week or so after I ruptured when all of us were just waiting for me to go into labor at any second (statistically, most women go into labor within one week of rupture). After a while, we formed a routine and while there was still plenty of worry, the tension became weirdly manageable the vast majority of the time. Now, all of a sudden, we’ve jumped back into high alert waiting mode.

Almost 26 Weeks

It’s been one month since I was admitted to the hospital.

We are now at 25 weeks 6 days gestational age. This is, of course, hugely thrilling especially when we consider where we started.

The good news is that the baby – who the ultrasound techs think is most likely a girl – is growing appropriately. This means that her cord isn’t getting compressed and the placenta is functioning, both excellent signs especially with preterm premature rupture of the membranes (PPROM) where, because of a lack of amniotic fluid, problems with those things can be an issue. Baby also has excellent heart tracings when we put her on the monitor three times a day. My maternal-fetal-medicine specialist (MFM) says that her heart strips are amazingly reactive and mature, which means her brainstem is getting good oxygen and blood flow. Although the typical methods of checking cervical dilation and length can’t be used due to risk of infection, based on the abdominal ultrasound last week, my cervix is at least 3.6 cm long and closed.

The nerve-wracking part is that PPROM – especially previable PPROM, where the rupture takes place prior to 23 weeks – imparts a high risk for pulmonary hypoplasia. Basically, this means that I could remain pregnant for a very long time and still have a baby that can’t breathe once I deliver her. This lung underdevelopment happens due to a lack of amniotic fluid, probably from a change in the pressure gradient when the amniotic sac ruptures. I also have a low amniotic fluid index (AFI) that varies from no measurable fluid to around 1.3 cm at my last official measurement (normal is typically >5 cm at this point in a pregnancy) due to the rupture, which increases the risk.

While there is evidence that a baby who suffers PPROM at 19 weeks’ gestation or earlier has at least a 50% chance of pulmonary hypoplasia and relatively few babies who lose fluid at 24 weeks’ gestation have severe issues with this particular complication, my situation falls into the somewhat murky middle. Unfortunately, there are no accurate tests to tell whether or not baby’s lungs are developing well. It’s a wait-and-see scenario.

Every day, however, brings more hope that we might actually take home a baby. We just keep praying for that miracle. I can’t say how grateful I am for so many people – both the comments here at the blog and in real life – thinking of all of us and hoping for this to turn out. I appreciate it so, so much.

Living in the hospital has become routine, although we had one (happy) surprise last week, which I’m going to do a separate post about because it’s just that wonderful. We’ve more or less moved into my hospital room, partially because when I was originally admitted, we’d actually been in the process of looking for a new apartment and moving.

For a year and a half, I’ve been commuting about an hour each way to work to a larger city from the small town we live in. When Arthur lost his job in November, we decided he would look for a job in the same city I work in instead of looking in our small town and we would move to the city. Arthur did find a job in January and had begun the process of looking at new apartments. I couldn’t look at the apartments since I was on modified bed rest or light activity. He did a great job, however, and narrowed our options to two.

In the last couple of weeks, we both realized that despite my being in the hospital, we needed to figure out a plan to get moved as soon as possible. For starters, I’m hospitalized in the larger city an hour away from our current apartment. Arthur just started his new job, meaning that he is working here as well. We also realized there was a good chance we are going to have a baby in the NICU here for a long time, and both of us want to be close.

So we turned in applications at the final two apartments we both felt were good fits, got a date in mid-March for when we can take possession of one, and last weekend, Arthur went home to pack. His siblings and parents came to help, and managed to get our entire den/desk area, most of the kitchen and the living room packed up. Arthur had already started packing our bedroom before I went into the hospital (with me pointing and directing from the couch).

It’s really strange to realize that when I left my apartment at 2:30 am on January 23, that was the last time I’d leave the place I’ve lived the last 9.5 years as my home. Even if I wind up going back at some point briefly, it won’t be home any longer.

That’s where things stand right now. Lots of changes.  Waiting. Hoping. Praying.