An Update and News

Content note: pregnancy.  If you’re not in a place for that or it’s triggering, please take care of yourself first and skip this one.  

Back in June, I went to see Dr. E for my saline infusion sonogram (SIS) to check my uterus for scarring.  He pronounced my uterus free of issues and also noted that my ovaries looked much better than usual.  I knew I’d been getting positives on the OPKs for a few months as well but had mostly discounted them.  Despite trying to manage my expectations, we’d been trying just in case something shook loose.

One July Friday night, I went to work and shortly into my shift, made a mental note to add “buy new bras” to my list for Monday.  My chest felt like invisible flames were dancing over it, a phenomenon that went on most of the night.  At around four in the morning, it finally hit me.   I’d only felt like that once before.  I counted the days off in my head.  The timing was right.  No way, I thought.

I’m an inveterate POAS addict, however, so I got home the next morning, did my thing, and then stared in shock as the lines popped up positive almost immediately.

On Monday, I called the RE’s office to do the blood tests to confirm.  Either 13 or 14 dpo (depending on the method of counting), my beta hcg came back at 180, a huge number for me.  My previous betas were 30 (11dp3dt with twins that I miscarried one at a time), 22 (10dp5dt with an ectopic pregnancy), and 63.4 (10dp5dt with my daughter).  I held my breath to the next beta forty-eight hours later, which had shot up to 530.

In the next few weeks, I had a spotting scare that revealed a 6w4d baby with a heartbeat and a tiny bit of bleeding in my uterus.  Waited.  Had a bright red bleed a week and a half later that sent me into a panic but the ultrasound showed a subchorionic hematoma (SCH) of about 1.8 cm that was pronounced “small” and not a major concern.  Given that the SCH that most likely caused me to PPROM at 21 weeks with my daughter started at 2 cm, I was less than reassured.

Despite the worry, the bleeding didn’t come back and the SCH shrank. My OB kindly works with my anxiety and checks in weekly to make sure there’s a heartbeat still.  I see the perinatologist (high risk OB) in a couple of weeks due to my history of preterm birth.  I’ll be 13 weeks on Monday, and just starting to believe that there might actually be a second baby in March.  I’m beyond excited at that thought in many ways but also know all too well that there’s no such thing as a ‘safe zone’ when it comes to pregnancy.  At the moment, though, the pregnancy appears to be progressing the way it should.

Truthfully, I haven’t known what to say here, hence the long delay in posting.  The whole thing didn’t seem quite real at first and then felt tentative with the bleeding.  I know well that feeling of hearing pregnancy announcements and the last thing I want to do is cause any one caught in the many difficult spaces of infertility pain.  I know all too well that ache.

I’ve always been honest in this space, though, and it’s time to come forward with this news.

So, for whatever it’s worth, here I am…nerves, happiness, survivor’s guilt, and all.

 

Light

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Content note: baby shower

On New Year’s evening, I went to work and promptly found myself having an overwhelming, visceral flashback to New Year’s day 2015, which I spent in the ER with one of my worst episodes passing clot after clot after clot. January is filled with anniversaries I’d rather forget, including the weekend my uterus got extremely irritable and I had to go to L&D at the small hospital in my community, begging them to give me something to stop the contractions and of course, the night my water finally broke.

I literally work down the hall from the L&D unit I was transferred to on Jan. 23, 2015 where I spent 55 days and the NICU where E was hospitalized. Sometimes, if I’m in the right area of my unit, I can see the tower where the L&D unit is housed and I can almost, but not quite, see the window of the room I lived in.

Sometimes this is an issue, but other times, I find it weirdly comforting. My memories of NICU are overwhelmingly negative, which is not the fault of the staff -many of whom were kind, excellent, and we liked enormously – or the NICU unit itself, rather, they are colored strongly by that second NICU stay when I was tired of the whole thing and angry about my baby going back to the hospital for nearly two more weeks. My memories of my time spent on bed rest in L&D, however, are quite positive.

One memory in particular stands out. I’ve meant to write about it for months because it was an act of kindness so far beyond anything I’ve ever expected or experienced that it deserves to be remembered. In a month full of dark anniversaries, it is a light.

~*~

When my water broke, I had nothing for the baby bought. The entire pregnancy had been so tenuous that I couldn’t bring myself to start really planning for a baby, let alone buying the necessary items.

Slowly, the weeks passed. We updated our care plan from having them hand us the baby as soon as she was born and doing only comfort measures to intubation only to full resuscitation. I passed the point of viability and then some. We had wonderful nurses (and doctors as well). Over several weeks in the hospital, the nurses had gotten to know us and we had gotten to know them. At some point, one of them had remarked on the adorable blanket and knitted wash cloths my aunt had sent. I told her I was pretty excited about those because they were the only baby items we had, along with a bib Arthur’s grandmother had made.

One day, the nurse manager of the unit asked if I wanted to have lunch with her. Arthur was working at this point, so I typically spent the day watching Castle, reading, or playing around on the computer, trying to stay calm and in a sort of modified Trendelenburg position to prevent myself from gushing and keep the pressure of E’s head off my cervix. However, the doctors had told me that every couple of days it would be okay for me to sit up or go out in a wheelchair for an hour or two so that I could get out of the room. I thought some company for lunch sounded great, so I accepted.

On the appointed day, I was almost 26 weeks along. I put on my bathrobe and the nurse manager wheeled me off the unit into the elevator. Instead of getting off on the cafeteria floor, however, we got off on a different one. She wheeled me into the OB classroom and I gasped in surprise and delight.

My nurses had put together a baby shower.

It still brings tears to my eyes that these women brought us wonderful food and gifted us so many beautiful, necessary items for having a baby. One of the nurses had even made us a gorgeously decorated cake.  It was the first time I’d really felt like we were going to have a baby that we might actually bring home. It was the first time we’d truly celebrated the fact that we were having a baby and that fact – no matter what – deserved celebration.

Arthur had managed to get the afternoon off work in one of those serendipitous coincidences and we opened adorable onesies. Pink ruffled outfits. A soft musical giraffe. Bath sets. Stuffed animals. I brought E home in one of those outfits, and a onesie reading “Supergirl” hung in her NICU room to remind us how far she had come and all the odds she had beaten to get even that far.  To this day, I use many of those items, and every time I pick one up, I think of that incredible generosity and the even greater message of hope that they gave me.

This is what gets me through those days where I get cynical or sad or other memories seem overwhelming. It’s what reminds me of the real goodness and beauty that exists even in the difficult days. It’s a gift I am incredibly privileged to receive both then and now.

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.