Content note: pregnancy, children, loss – none recent

This weekend, we tore up some of the scrotty grass that’s never grown well next to our patio in the back and put in hostas.  I pulled out the dead hydrangeas from the back bed and planted shade loving coral bells.  We went to visit college friends and as we sat, I had one of those moments that might be called transcendent or even holy, where for just a second, everything was right with the world and good.

The new life, both literal and figurative, was all around us.

I came home, checked my calendar, and realized that it’s not all that much longer until my saline infusion sonogram for this final transfer.  And before I knew it, this morning I was ugly crying, the one that isn’t a couple of crystal tears decorously sliding down the cheeks, but the red-faced, sobbing, snotty Kleenex filled kind.

That’s life, though, isn’t it?  At least after a certain point?  Where the most extraordinary exists among the prosaic of every day and the deepest, darkest muck that can be dragged up?

I am so incredibly, amazingly thankful for my girls.  And I am so terribly sad that I never got to meet the three that died and were miscarried early, long before they truly lived.

I honor the truly ordinary, uneventful pregnancy I got the immense privilege of experiencing.  And I grieve the long weeks of waiting, of fertility treatments and IVF, of hope mingled with sadness, of ultimately having three others over far too early.

I get the loveliness of watching my older daughter survive and now thrive.  And I mourn that she lost the last weeks in pregnancy that she should have had, that she went through so many painful procedures, that we were separated by plexiglass walls and nights apart at the beginning of her life.

I can’t even express how much gratitude I have to see the girls treasuring each other and also fighting – as siblings do.  And I can feel my heart breaking again and again and again that my sibling is gone, that a person I held as he came into the world left it long before me in such a terrible, senseless way.

I hold my dear ones close, their precious selves tangible and messy and wonderful and alive.  And I cry remembering the unnatural coldness of my brother’s still face, the benediction of viewing him in death, the slight smear of blood that transferred to my hand when I put it on his cheek.

I am fiercely glad for my marriage and the love my husband and I get to share every day.  And I mourn the things we have both broken over the years, some of which are still being repaired.

I am grateful for the chance to complete this final cycle, to close out this particular road, to know that no matter the outcome, I am truly fortunate and ready to live this good life I have.  And I am anxious, struggling with the months of waiting in the lead-up, dreading some painful procedures, and worried about the potential for more hurt.

For the last several months, I’ve been veering back and forth between the extremes, saying how I’m fine (true) and FINE – F*cked Up, Insecure, Neurotic, and Egotistical * – (also true).   It doesn’t sum up neatly, the pros and cons on the paper don’t cancel each other out.  They’re all true, all a part of what poet Mary Oliver termed “your one wild and precious life”.

I am, without a doubt, in today’s parlance, a hot mess these days.

And…it’s an absolutely beautiful mess as well.

*credit to Louise Penny

This post is a part of Microblog Monday.  If you want to read more or add your own, please head over to Stirrup Queens’ blog.  Thanks to Mel for originating and hosting.  


Those Ads

Reading the other day, I came across this article on Slate about ad algorithms, grief, and social media (TW for stillbirth).  Basically, it explores the phenomenon where, post loss, people are still bombarded with ads for baby or pregnancy items when they go online.  It also has the FB shortcut to hide some of these ads but less advice about the vexing problem of FB’s tendency to “celebrate” anniversaries of particular posts.

When it happened to me, I was pretty sure I wasn’t the only one who had it occurring.  I can vividly remember getting baby ads after my first miscarriage because I’d spent time looking up pregnancy-related websites.  It sucked, especially in those first few days after arriving home from the hospital post D&C when I was physically and emotionally achy.

My second loss was a little less problematic in terms of the ads – mostly because I had known something was wrong from the start and my searching had been confined to things like “ectopic pregnancy symptoms” and “really low beta HcG” and “pregnant but bleeding”.

The one that really wrecked me, however, was after E’s birth at 28w4d when I kept getting ads for maternity clothes while she was in the NICU.

The Slate article goes on to talk about why there aren’t better algorithms to prevent these triggering ads: “The real problem is that there’s no quick capitalistic incentive for Face.book to do the work of sorting ads or pictures for you.  As one grieving woman told the Australian website…’There’s no money in miscarriages, obviously.’”

Having walked through infertility and miscarriage, I can’t help but think, as do the women featured in the article, that there really does have to be a better way.

Preemie Parenting: Our Own Version of Normal

Like a number of preemie parents I’ve read, I figured once we got E home from the hospital – especially the second time, when she was off the oxygen – we’d eventually pick up a somewhat regular infant experience. I mean, I understood that she would be developmentally closer to her adjusted age and there were going to be challenges, but after NICU, being home felt luxuriously normal.

When E was in NICU, twice nurses referred to her as a “micro-preemie”. I bristled a bit at that, and technically speaking, I was right: micro-preemies are usually considered babies born 26 weeks’ gestation or less and under 1.75 pounds. However, it’s not unusual to loosen the definition to include babies less than 29 weeks’ gestation and/or under 3 pounds, which E fits on both counts. Regardless, I didn’t want to hear it. E was a miracle. She had never needed a ventilator and was on c-pap for around 24 hours. She was going to be completely fine, and by ‘fine’, I mean that somewhere in my head I got wildly optimistic and figured that things were going to get much closer to what one would expect with a term baby.

Well, E is still a miracle, and I don’t use that term lightly. She smiles, giggles, and loves people.  She reaches for toys and plays now.  There’s no doubt we beat the odds big-time with her surviving at all. But despite the fact that E is doing remarkably well for how premature she was, there’s also no doubt that it’s not quite the same thing as raising most full-term infants. We go to doctor’s appointments/tests about once a week and get therapy weekly right now.

I got my first major taste of this beginning in August when E decided she was not going to eat peacefully. Prior to this, E had started occupational therapy (OT) to help her keep up and reach developmental milestones, which I had expected she might need. Eating had always been a challenge, but starting around the middle of August, the struggle intensified dramatically. When I say she wouldn’t eat, I mean she kicked, screamed, arched her little back and tried to throw herself off my lap to get away from the hated bottle.

In my drafts, there are writings totaling over six pages detailing the many visits with the pediatrician, specialists, Zan.tac, Pri.losec, changing bottles, changing techniques, and Arthur and I staring at each other in total frustration and worry as we watched our normally happy baby turn into a child that alternated between lethargy and screaming. It came to a head in mid-October when the GI specialist nearly admitted E back to the hospital but told us we could try a hypoallergenic formula as a last-ditch effort to avoid readmission. If she didn’t improve quickly, we had very little choice.

The new formula worked. E improved and was diagnosed with a milk allergy. She did not, however, get enormously easier to feed. Somehow, probably because Arthur and I are nothing if not incredibly stubborn, E has managed to gain weight and avoid a ‘failure to thrive’ diagnosis. We track every calorie. The ongoing battles with feeding continue to be a challenge.

Around this time, I also noticed something else. E has always had a few very mild contractures on her left side. We – and the various therapists that saw E both in NICU and First Steps – always assumed that the reason for these was the PPROM and being trapped for weeks in one position without amniotic fluid. The problem was that as E grew, they weren’t going away. She developed a bit of torticollis that led to a decided flat spot (plagiocephaly) on the left side of her head. With the OT and a lot of stretching, we managed to get the torticollis mostly corrected and the plagiocephaly improved.

During tummy time I also started to notice that she would push up with her right arm, but not nearly as much with her left. I pointed this out to the OT who assessed E and agreed. The left arm and leg were weaker than the right. We continued with OT and waited a little longer. The left sided weakness was mild, but continued to persist.

The weakness and contractures that were decidedly one-sided (hemiplegia) stood out as a possible neurological issue. I knew neither of E’s two brain ultrasounds in NICU had shown bleeding, but I also knew that the weakness was still present. I asked the doctor at the neonatal follow-up clinic about it, and she concurred that possibly having a neurologist evaluate was a good idea. We waited another month for the appointment, hoping E might continue to grow out of it and the appointment would become unnecessary.

The appointment was necessary and the neurologist agreed that there was a tone difference between the right and left sides. “I’d like her to have an MRI,” the neurologist told us. “She may have a small lesion in her brain and some mild cerebral palsy.” Seeing the alarmed expressions on our faces, the neurologist explained that cerebral palsy simply means that something happened that affected E’s motor skills before age 1 and reassured us that it didn’t mean that she’d never walk or have severe motor issues. In fact, the neurologist said, she expected E to keep progressing well and eventually catch up. She pointed out that E uses her left hand and it wasn’t contractured into a fist, which meant whatever is going on is very mild.  The neurologist also told us that the MRI might look normal and the issue might be due to the PPROM and restricted movement.

The neurologist also told us E needed a swallow study because of the hemiplegia. I’d refused swallow studies in the past because everyone had told me that the study checked for aspiration and we knew E wasn’t aspirating. She didn’t have the lung infections that mark even silent aspiration and no other symptoms. However, this was the fourth or fifth medical professional that had recommended a swallow study, so I reluctantly agreed and the swallow study is scheduled next week.

The MRI is scheduled for tomorrow. There’s a sense in which nothing will change, no matter what it shows. We think E is wonderful. She’ll continue with therapy. Regardless of the challenges, diagnoses, or issues we face going forward, what matters is that she’s our daughter.  We’ll love her, parent her, and fight for her, just as we always have.

What it does remind me, however, is that E isn’t a full-term baby. That this didn’t end when we left the hospital or got rid of the oxygen or finally turned in her apnea monitor. It’s meant that I finally have to start letting go of those things that define other people’s parenting experiences and embracing E’s timetable and coming to terms with accepting that E was born at 28 weeks due to circumstances beyond our control and all that entails.

It is what it is.  And that’s okay.  It’s our own version of normal.

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.

Dancing the NICU Freak-Out Shuffle

 Thank you so much for all your well-wishes on E’s birth!  They are much appreciated!

Once we knew we were having a preemie, several veteran preemie parents warned me that the NICU is, variously, a “rollercoaster”, “two steps forward, one step back”, and to “never trust a preemie”. Up until quite recently, E had been mostly on a straight upward trajectory. Starting with reasonably good lungs for a preemie despite the PPROM and oligohydramnios, she’d been able to have her feedings go upward at a decent rate, her bradycardia episodes had been minimal, and she was needing less supplemental oxygen. I started to get comfortable and wonder if she was just going to keep doing well all the way through her NICU stay.

I had gotten a nasty cold a week earlier despite more or less developing germophobia and constant careful hand hygiene. I couldn’t visit the NICU until I was 24 hours symptom free. Unfortunately, I wound up needing to wait a full week before I could see E. Arthur, who did not get sick, wore a mask and set it up to Skype in E’s room. It was better than nothing, but not the same.

Finally, on Tuesday, I was cleared to go see E. She looked bigger and fuller in her cheeks, more like a normal baby. Holding her was bliss, and I sat and stared at her for a long while, memorizing her features. She looks exactly like Arthur did as a baby, although she definitely has my ears. This is obvious because I have remarkably pointed ears (for real) and it’s funny to see them on E. E had gained weight, was up to a whopping 3 pounds, and we had a nice day together.

Then came Wednesday.

It started out with Arthur and I having a disagreement. Sleep deprivation can turn even the most minor issues into major ones, and by the time we had smoothed over our differences, I wound up going in to the hospital much later than I’d planned. I was cranky, tired, and out of sorts already when the nurse practitioner (NP) called me while I was in the car. I told her I was on my way and she said she’d talk to me once I arrived.

I’ve been in healthcare long enough to know that NPs and doctors don’t generally call if things are going well. I hurried to the hospital, got up to NICU, and after scrubbing in, headed for E’s room. When I got there, I found several nurses drawing blood and serious looking medical equipment scattered all over the counter.

Cue total panic.

It transpired that E had suffered several deeper, uglier bradycardia episodes that morning during her feeding than normal for her. Bradycardia episodes or “bradys” are a situation where the baby’s heart rate and oxygen saturation plunge below the usual range for an infant. They’re fairly normal in premature babies since preemies don’t have a fully developed nervous system that regulates these things perfectly. However, there had been more episodes than usual and E had needed extra stimulation to recover. A new pattern with bradys can indicate developing trouble, hence the sudden attention and work-up.

The nurses drew blood to culture for bacteria and check some labs. They started an IV for fluids. X-ray was called to check E’s lungs and abdomen. I stood watching and sobbed. The nurses tried to reassure me. E wasn’t lethargic. Her vital signs were staying stable. So far, her labs were coming back normal. They were starting her on antibiotics just in case there was an infection somewhere. She had good bowel sounds, no blood in her stools, and her abdomen was soft. In the one funny moment during the whole time, E managed to get some impressive range for a girl and peed all over the nurse when they were trying to put in a temporary catheter to get a urine sample.

I wasn’t having any of it. I knew, intellectually, there were any number of issues that could have caused the bradys, ranging from the fairly benign (reflux) to the very bad (necrotizing enterocolitis/NEC) but it didn’t matter. I was very worried and scared.

Then the x-ray came back. The neonatologist said he was concerned about an area in her bowel. He couldn’t be sure whether what he saw was air bubbles in the intestinal wall, indicative of NEC, or just some stool in there. As a precaution, E’s feeds had been stopped as soon as she’d started having bradys, antibiotics started, and another x-ray in six hours ordered. I sat holding E, trying not to cry. NEC is an extremely serious condition. Basically, a part of the intestinal wall gets infected and dies, which can cause the intestinal contents to leak into the peritoneum, in turn causing massive infection and sepsis. It’s not unusual for babies with NEC to need surgery to remove parts of their intestines, which can cause issues with nutrient absorption and feeding later on. Sadly, around 30% of babies with NEC die.

The next x-ray was also inconclusive, but the doctor said he still saw an area he didn’t like. I decided to spend the night in E’s room because the idea of getting a 2 am phone call that she’d taken a turn for the worse was intolerable. E did well through the night, however, with one minor brady. I waited for the x-ray scheduled for morning. It was difficult knowing the only thing I could for my child was hope, pray, and wait (again).

The third and fourth x-rays, thank heaven, came back looking infinitely better than the first two. In fact, the NP and neonatologist said that if they hadn’t seen the 2nd x-ray yesterday evening, they wouldn’t even have felt worried and would have just restarted her feedings today. E doesn’t have any of the other symptoms of NEC, such as bloating or blood in her stool. The problem is that with two inconclusive x-rays, while they don’t think E has/had NEC, they simply can’t rule out 100% the possibility that they caught NEC at a fortuitously early stage and due to stopping feeds and starting antibiotics were able to prevent it from progressing.

At the moment, the whole “what do we do next” issue is still very much undecided. Because NEC can’t be ruled out entirely, the current inclination is to hold E’s feeds for anywhere from a couple of days to 1 week and give her nutrition through her IV so her bowel can rest. The problem with this plan is that E would need a special IV called a PICC line if it’s going to be more than a day or two before restarting feeds. The NP and neonatologist are holding off for the moment on making any specific plan until another x-ray or two can be checked and labs done tomorrow.