November and December were very difficult months for my pregnancy. I soon surpassed the point when most other women would have given birth, with the babies weighing in at over 10lbs (their weights increasing rapidly every week). Everything had become uncomfortable, and commuting had become unbearable. I had moments on the train of tears involuntarily running down my face. I can’t do this anymore, was the thought coursing through my mind, followed by deep shame. I thought I was stronger than this. I thought I was wiser, too; that I had perspective, that I couldn’t be defeated by a temporary condition.
One day after getting off the LIRR and onto the E train, I found myself squashed between several commuters, all oblivious, all with their headphones in and phones out. I was exhausted and my pelvis was in excruciating pain. I didn’t think I could stand there another second. The tears started. I can’t do this anymore. A woman nearby saw me. She grabbed my arm and pulled me to where she was standing, placing my hand on the pole, then cleared an area around me. “Stand back,” she said. “Can’t you see that she’s pregnant? Stand back, and don’t bump into her.”
She saved me that day.
That night, I couldn’t sleep, it was just too uncomfortable. I can’t do this anymore.
But then, my alarm went off. I got up. I got ready. I got on the train. I did it all over again.
Just before December started, I began to itch. My tummy had already been itching constantly; it had reached capacity in terms of growth, the skin stretching to its maximum.
This itch was different, though. It was localized on my palms and feet, and it felt internal–in the blood, in the bones. I’d scrape my palms across the rough stubble on Jimmy’s face every time we were sitting watching TV. I’d take a hard bristled brush and rub it back and forth against the soles of my (usually sensitive) feet.
I told Jimmy about the itch. He told me to Google it. The first thing that came up said it was normal, caused by high hormones. I was carrying multiples–with two placentas, my hormones had been sky high all pregnancy.
I wasn’t convinced. Something felt wrong. I kept searching, and suddenly the same condition kept coming up again and again: cholestasis of the liver. In short, the liver begins to malfunction because it can’t handle the high levels of pregnancy hormones. It begins to deposit bile in the blood, leading to a build-up that causes various risks to the babies. I read through the risks frantically, feeling mild relief as I saw that they were all minor – until I got to the final one. Stillbirth.
I didn’t want to think that word, and I certainly didn’t want to speak it aloud.
Then I read what the hallmark symptom of the condition was: intensely itchy palms and feet. I had it. I knew it right then.
There was no way to treat it. There was one medication that may — or may not — temporarily control the bile levels. But the only way to neutralize the risk was to deliver the babies while they were still healthy, and there was no telling how long that would be. The longer they were in the womb, the more unpredictable and dangerous the condition became.
I was at 30 weeks. It was too early to deliver and not risk the babies’ ability to breathe on their own. But could we afford to wait to the safe 37-week mark?
My mind was racing. I told Jimmy I thought I must have this condition.
“No, no, you’re overthinking it. See? It’s really rare,” he said, pointing to the screen. “Itching is normal,” he added, citing the earlier article.
I nodded silently, not convinced, but not wanting to think or speak the word: stillbirth. And how could I say that word aloud to Jimmy? Jimmy who had waited for this future his whole life. Jimmy who was still pinching himself that he somehow got blessed with twins. I was supposed to be making his dreams come true, and now what if we lost one, or both?
I’d just wait until the doctor appointment we had that week, I told myself. I’ll raise it with the doctor, and get an answer, and feel better.
But that didn’t comfort me either. I read blogs of other women who feared they had the condition. Their doctors blew them off, leading them to worry, every day worse than the prior one.
In the two days before I saw my doctor, the itch got worse. It spread to my collarbone, my arms, my legs, my back. I scratched myself raw, tiny open wounds peppering my skin all over. Every time I itched, the pain was both physical and psychological – because with every itch, the word raced through my brain: stillbirth, stillbirth, stillbirth.
The morning of our doctor appointment, we went to Maryse’s one-day event in Manhattan (my doctor is also in Manhattan). On the train there I snapped at Jimmy, repeatedly. He was confused, and hurt. I was inconsolable, steeped in anxiety yet still refusing to tell him exactly why.
By the time we got to Maryse’s, the tears couldn’t stay in any longer. She asked how I was doing and I began to cry. Then sob, which I quickly took to the bathroom. Finding no privacy there either (I snapped viciously at Irene who tried to make conversation with me as I was falling apart), I escaped into the back part of the floor, hijacking a stranger’s office. I tried to find relief in the books on the shelf, but there was none.
Jimmy came to find me a little while later. I need to be alone, I told him. No, he said. You need to go in the room and share what’s going on.
I couldn’t. That would mean speaking the word: stillbirth. I wouldn’t do it.
I eventually did join the event, though the tears kept pooling in my eyes, escaping now and again. Still, for the most part, I held it in.
During one of Maryse’s “release” exercise, I heard Jimmy crying. Ugh. Aside from the fact that making Jimmy cry is like making a golden retriever cry (it means you are a horrible person), what was I doing? He must feel helpless, seeing me in pain, not knowing why, powerless to fix it.
Then we left Maryse’s event to see the doctor. We waited an eternity, mainly in silence, in a hot, small room. I scratched my skin compulsively.
Finally we were sitting there in front of her. My heart racing, I told her I was itching, all over.
“Don’t say on your palms and feet,” she said. I nodded, the tears pooling in my eyes again. She hung her head.
“I so wish you hadn’t told me that,” she said. “Your pregnancy has been so healthy. But let’s get you on medication immediately, take some blood tests, then decide what to do.”
Jimmy’s eyes darted from one to the other of us, trying to process what was happening.
“Did she tell you why this is serious?” The doctor asked him. She didn’t wait for an answer. “It causes stillbirth,” she said, staring him square in the eyes to make sure her words penetrated. She did what I couldn’t do.
He instantly began to well up in disbelief.
As much as I felt for him in that moment, I was overcome with relief. I wasn’t alone in this anymore.
In the end, I delivered at 36 weeks. We tried to wait until 37, but even after being put on medication, the itching only got worse. At the appointment before my delivery, watching me squirm uncontrollably in front of her, my doctor almost delivered me right then, but we waited two more days until just before Christmas Eve.
When I saw Jayden pulled out of the womb, his mouth wide open and wailing, I felt the biggest wash of relief I have ever felt in my life. Nothing could get me down that day. When they wheeled me into the recovery room, I was alert, talking excitedly. My doctor and the nurses were taken aback by how sky-high (in terms of spirits) I seemed to feel (I had refused all drugs except the numbing morphine for the surgery from the ribcage down).
Ten minutes later, just before they were going to hand me both boys, Brodie was suddenly taken by the doctors and rushed away. He was having trouble breathing. Jimmy came over, stammering, saying Brodie was fine one minute, then struggling to the breathe the next. My doctor was standing there. “It will be okay,” she said. “He just needs to work out some extra fluids in the lungs that he didn’t expel yet.”
As it turned out, she was right, but it was harrowing nonetheless, hobbling in pain to visit him in the NICU every few hours and seeing him there behind the glass, hooked up to several wires. I hadn’t even held him yet. Ultimately, they let me do skin-to-skin contact with him. I still remember feeling the warmth of his small body against mine; he seemed so tiny, so vulnerable.
The days in the hospital were difficult. I already hadn’t slept in months. As the morphine wore off and the pain flooded in, I felt as if someone had sawed me in half with a chainsaw. I began to feel like I would never, ever feel normal again. Getting up was an effort. Going to the bathroom was a huge effort. All the while, I struggled to breastfeed Jayden periodically. The nurses would wheel him in every few hours.
My family was there, and several doctors and nurses would come to see me every few minutes. It was like a constant parade of visitors. Even though that meant sleep was even scarcer, I was grateful for the support. Jimmy would sleep beside me every night in a chair by the bed, escaping to Scott’s apartment a few times for an extra nap because between the discomfort of the chair and our very loud neighbors (they had had a baby girl, and both the parents and their family could not stop commenting on how her lips were thin and she would probably need collagen injections – I shit you not) he had slept even less than me.
The day we left the hospital was frightening. Jimmy fumbled trying to get the boys in the car seats – nothing looked right, in large part because they were just too small. He asked the nurse for help in a panic, but she said she couldn’t help us, “it’s a liability.” We watched how-to YouTube videos, but in our stressed and overtired state we couldn’t really focus on them.
Once we were all in the car, I suddenly felt all the support we’d had over the last few days – the doctors, the nurses, my family – drop away. It’s just us now, and these two tiny beings, and we have no fucking clue what to do.
The drive home – 55 miles from Lenox Hill in Manhattan to Long Island – was one of the more difficult drives of my life. Jimmy couldn’t stop checking the rearview mirror. Feeling like he couldn’t really see the twins, he pulled over – on the highway – several times. I finally snapped at him, stressed and panicked myself, telling him that stopping on the highway was incredibly dangerous and he needed to just get a grip. Hurt, he said nothing, and we rode the rest of the way in a tense silence.
Things got worse when we got home. I was in pain. Major pain. Pain unlike anything I have ever felt. Ultimately, I tried taking half a Percocet (I did not want any drugs), but I hated it – it knocked me out, made me feel fuzzy and disoriented.
Jimmy, meanwhile, was feeling growing resentment. I couldn’t leave the couch. I couldn’t walk. We had two infants at home. He had to do everything for them for three days straight. His mother was there, but at 76 years old, she could only help so much. Most other family was gone; it was the holidays before New Years. No one slept, at all. I slept only when the Percocet knocked me out.
Jimmy wanted to have visitors over in that first week after New Years, desperate for some outside support, but I couldn’t stand it, I was in too much pain. People would come over and I’d hide out in the bedroom with the door closed, crying.
We ended up on our marriage counselor’s couch in desperation much sooner than we expected; we were falling apart. I felt trapped, like I’d never be normal, like we’d never have a handle on things. Jimmy felt alone, overstressed, and helpless.
How did we dig out of this?
By doing what we knew to do. Get outside support. Get open and vulnerable. Get committed to having things be different.
We set up systems. Sleep shifts, daily family support. We came up with a rule that if one person asked the other for help, it was given, no hesitation, no questions asked. There was nothing worse than being overtired with the two of them screaming, trying to hold them but petrified you’ll drop them because you’re just too tired, and feeling so alone. The most sleep we got during that time was 4 hours each, in a 24-hour period. There were times I had to “save” Jimmy, even though I had only gotten two of my four hours of sleep; there were times he had to “save” me too. I still don’t know quite how we got through it.
Slowly, though, things began to shift. Our systems worked. We started to enjoy the boys more and feel less overwhelmed. We started to take in that we got to be parents of twins, these beautiful brothers, and it was incredible.
Then my father – who is blind – visited, and the boys got sick at the same time. I was so worried about my dad that week; he was sad he couldn’t help more, do more, see more. I wanted him to feel included, and to feel like he was forming a connection with the boys. Meanwhile, the boys had gotten a cold, and I was getting worried. Brodie in particular was not himself; usually alert and somewhat hyper, he was suddenly lethargic, barely opening his eyes, and his breathing became increasingly labored. We took them to the doctor, several times, but each time the doctor said: “Suction out their noses, give them drops. Be patient, it’s viral so they have to work through it on their own.”
Brodie wasn’t working through it, though. My dad sensed my angst and tried to comfort me. Then everyone did, Jimmy and my mother-in-law too. It’s a cold, it’s just a cold, they said. He’ll get through it. I didn’t think so.
Toward the end of that week, I cried for three days straight. It wasn’t sobbing or “active” crying, It was just this sharp inner pain that caused hot tears to continuously stream out of my eyes. That Friday, I was feeding Brodie and he suddenly spasmed, his eyes rolling back in his head, and vomited up what looked like thick mucous. I panicked. I told Jimmy he had to come home, now (he was at work). I called the doctor and said we’re bringing him in. The doctor didn’t argue; he heard the fear in my voice.
When we did, the doctor was very quiet. “His skin looks gray,” he said. Then, after a few minutes: “You need to take him to the ER, now. They’re going to transfer him to another specialized hospital. You could drive straight there yourself, but, I think you need to go by ambulance.”
I felt all the fear I had been holding in suddenly bubble up inside me. I was frightened.
The hospital agreed with our doctor, only in its opinion, by ambulance was not fast enough – it would have to be by air ambulance.
I was crying through all of this. The nurses at the reception desk at the first hospital tried in vein to comfort me. When the doctor told us Brodie had to go by helicopter, I could barely speak.
“Someone needs to go with him,” she said. “In the helicopter. It’s usually the mother.”
“I can’t,” I told her. “It will have to be his father.”
My nerves were shot. I wouldn’t make it if I was the one to go, I wouldn’t be able to get through whatever was coming next. The doctor gave me a judgmental look, commenting on how she wasn’t sure the helicopter could handle Jimmy’s extra weight. I didn’t care. When Jimmy came over (he had taken Brodie to get a chest X-ray), the doctor asked if he would go in the helicopter. Our eyes met briefly and he instantly understood. “Yes, I’ll go,” he said, without hesitation.
Jimmy would later tell me about the surreal moment when Brodie’s tiny body was loaded onto a tiny stretcher that was still far too big for him. He told me about how when they landed, and the flight team came running with Brodie to the waiting ambulance, the drivers were confused. “Where’s the patient?” They asked. They weren’t able to see Brodie because he was too small.
Meanwhile, my sister-in-law Tricia came to pick me up to drive me to the children’s hospital. She told me my dad was getting a flight home. I wouldn’t get to say goodbye.
That forty-minute drive – during which Tricia mercifully made inane conversation with me that had nothing to do with my 6-week old son struggling to breathe – was my only moment of peace. Brodie was in the helicopter with a his father and a full medical team. I allowed myself to relax, even laugh a little, and that ended up being important because we had a hard five days ahead.
For those next five days, we were in the ICU at Cohen’s Children’s Hospital around the clock. Brodie was in a giant bed, his little body again hooked up to several wires, and breathing support. We watched the machine puff open his lungs in a rhythmic, but artificial, way. All the doctors and nurses kept telling us he would be fine; we had brought him at the right time. He still had to fight the virus on his own, there was no medication that could help, but with the breathing support he would make it through.
Sleep was again scarce. The ICU was loud. Several children were there with pneumonia. They would scream and cough and cry, and the doctors would pound on their chests and backs. So this never ends, I told myself. Who knew how many more times in the boys’ lives we would find ourselves here.
The main gift that came out of the ICU experience, though, was that Jimmy and I came back together. We got breakfast together every morning at Au Bau Pain (our only option). We traded off sleep shifts again, giving each other an extra hour here and there. We were affectionate with each other again, we talked about the future, we realized how strong we are together and how off it feels when we let things come between us.
When Tricia told us Jayden was starting to get worse too, it was a tough blow, but with our newfound strength we handled it well. Jimmy stayed with Brodie, I took a train home. In the end, I made Tricia drive me back to Cohen’s with Jayden twice (after also going to the local ER one night) because I feared his breathing was becoming labored too. Jayden ended up coming through, however, without needing to be admitted.
One of those nights, at Cohen’s, Jimmy, Tricia and I were all in the ER, waiting together with Jayden. Brodie was upstairs sleeping. Jimmy had brought us some coffee and muffins from Au Baun Pain (lol). It was 3 am. It felt like we’d been through a war together. We laughed and told stupid jokes and people-watched. It wasn’t the best of circumstances, but I thought to myself, these are the moments when families are built.
When we brought Brodie home, and Jayden was by that time well, the clouds parted. We were had made it through to the other side, and knew we were stronger for it.
And I had learned some important lessons as a mother.
The main one? To trust myself.
I knew, when I was pregnant and I began to itch, that something was not right. I knew when Brodie wasn’t going to get better. I also began to understand how failing to ask for support – and failing to trust my husband and our relationship — was fatal to maintaining the stability we needed to get through the hard times.
I learned another valuable lesson too, about limits.
There’s a Lumineers song I heard when I was on the LIRR on one of my last commutes to Manhattan. There’s a line in the song that has stuck with me: “Love is deep as the road is long.”
The challenges of motherhood have caused me to push so far past limits I was so convinced of before that I truly understand now that there are no limits. They are a complete illusion.
If you ever find yourself coming up against a limit, you should know it is not real. It has nothing to do with you lacking time, or resources, or “not having it in you,” or something just not being possible.
I’ll put it this way: if you want to know what it feels like to be unlimited, find something that matters enough. That’s it.
I don’t understand everything about becoming a mother; I’m only at the very beginning. But I do know you don’t shrink, which is what I thought before — I thought that you “lose” your identity, your old life, your freedom, your time, yourself.
No, instead, you expand; you become larger than yourself, larger than who you thought you were, larger than who you thought you could be, and you realize that you are, in fact, unlimited.
There is nothing I can’t handle. There is no goal I can’t achieve.
I’m grateful for the honor of getting to raise my two sons — for the challenges we’ve had and the challenges ahead — and I am grateful too to get to continue to be on this journey of becoming my best self, for my boys, for my family, for myself.