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Doing Time in the Neonatal ICU

‘What hurts you, blesses you. Darkness is your candle.’ —Rumi

 

It is hard to believe it is already December. I can’t think of a time when I felt as though so much had happened in the space of 12 months as it did this last year. My husband and I recently ‘got away’ which means we left our Au Pair with the kids for one night, escaped off to a nearby remote island for a night alone.

On our journey I felt as though it was the first time I could breathe in a long time. I had gotten caught up in the ‘doing’ that occurs with life, that I completely forgot to reflect, to process all that happened this last year. I realize now that I also wasn’t writing as frequently, which has made me feel as though all my thoughts and feelings have been bottled up, waiting for an opportunity to come out.

Last December I had to stop working because I was at risk for placental abruption. I had some bleeding after a shift one night, needed to be in the hospital for a week as I waited to see if it returned. Fortunately it did not, but I was stuck in this strange place, of no baby yet, feeling relatively ok, but needing to slow down. The mere fact of taking time away for my own rest felt unnatural and unnecessary, but when I considered the possibility of tragedy, it was the only option.

Unfortunately, I did not make it to 38 weeks. On December 16th we had friends over for dinner, and just before they left, I went to the bathroom. In the bathroom, blood seemed as though it was pouring out of me. I could hardly control it enough to be able to get to the dining room, to tell my husband and friends we needed to go to the hospital. By an amazing coincidence, my friend is a doctor, she works in the emergency department of the hospital I was headed to, and boldly and calmly drove me to the hospital.

If any of you are familiar with Seattle geography, know that getting from Bellevue (where I live) to Seattle (where my hospital was) can be a feat. You have to drive over water to get there. I believe she is the only person who would have done that drive, all others probably would have made me call an ambulance. But ER doctors are gutsy. They weigh risk/benefits and worst case scenarios in their heads all day.

I tried not to panic, remembering what my own doctor had told me, that if I started bleeding, it was MY blood, not the baby’s, which had a weird calming effect. At least I could be comforted with the knowledge that my baby was not bleeding out. The time it took to get to the hospital seemed like an eternity, but we arrived and I was not soaked in blood, or fainting from loss of blood either.

I am always so surprised at the amount of ‘non-surprise’ or calm that the labor and delivery unit has. I thought for sure I was in trouble, but when I arrived, they put my in a room, to have me wait 20 minutes or so until I was fully evaluated.

What most people don’t understand, at least those who have never given birth, or those who have had seemless, uncomplicated pregnancies and deliveries, is that we as women are closer to death during this time than any other time, at least until we are older and actually dying.

Pregnancy and childbirth is scary. There is also no guarantee that you or your baby will come out alive. We walk this fine line of wanting a family, feeling invincible as we carry an additional human for 9 months, but then are faced with some very scary health conditions like pre-eclampsia, placental abruption, and others. I know women who have had uterine ruptures, causing them to be in the ICU for blood transfusions, I have known women with heart failure and sepsis, and I have known countless women who have lost babies to miscarriages or even as tragic as having a stillborn. We walk this journey with our spouse, but also alone, as the growing of the baby is inside only our body.

I was terrified. I also had a bit of PTSD from my last pregnancy (in which I also had some bleeding, baby had a very high heart rate, and I did not progress when the physicians tried to induce labor). The last thing that happened before I delivered my firstborn was that his heartbeat was lost. I was wheeled very quickly and unceremoniously to the OR as I fought back tears, calculating in my head the amount of time it would take to get the baby out. I figured that if there was truly no heartbeat, my baby would have significant loss of blood to the brain, and there was a very real possibility that we would be delivering a baby with no brain function. In the OR prior to starting with the C-section, they checked again and baby’s heartbeat was back, loud and stronger than ever. We continued with the C-section and baby came out screaming. I was extremely thankful, but acutely aware at how close tragedy had been.

This time, I thought we were prepared. Baby was 33 weeks, the bleeding had stopped upon arrival to the hospital, and it was going to be a planned surgery the next day. I am a pediatrician, so I know what 33 week babies are like. I knew things would be ok, maybe we would even be able to go home relatively quickly (1-2 weeks maybe?)

What I was not prepared for was the combination of the unique stressors. It was December, so Christmas was looming. I also had a 2 year-old at home, who didn’t have the capacity to understand what was happening. I also had never experienced being in the hospital for days on end…..as a patient.

What came next was three weeks of hell. Baby Cole was delivered via C-section, which is major surgery. Ambulation was painful and challenging. I was instructed not to drive or lift anything heavy. Couple that with needing to pump every 4 hours to keep up milk supply, figuring out how and when to be at the hospital, but also to try and be home for my toddler.

The NICU became our ‘home away from home,’ but I hated every minute of it. I remember as a resident in the NICU not seeing moms very frequently, also judging the fact that they weren’t there the exact minute the medical team came by to round.

As a mom, I hated the medical team, for rounding without me, feeling like I was a bystander as they cared for my infant. I disagreed with the initial refusal to let me hold him on the first day due to his “tubes and such,” and that it was “too hard” to put him on my chest.

When I was scolded for being ‘too loud,’ as my husband and I lovingly whispered about his nose, or his little hands, I lost trust in the team, as I felt inappropriately reprimanded. This worsened as baby Cole progressed, quickly becoming the ‘least sick baby’ in the unit.

I remembered those days of seeing 33 or 34-week babies as a resident, dismissing them for their lack of pathology, blithely talking about how they are just ‘feeders and growers,’ and totally not understanding their parent’s stress. Those babies do FINE. Looking back, I am embarrassed by my lack of compassion.

Baby Cole WAS doing fine. But the stress, the emotion and the total lack of support I felt by the medical team, and those around me, definitely took its toll. Nothing in my world was making sense. My toddler hated me for not being around. My baby was alone for most of the day, and I felt as though I was doing everything wrong. I felt like a terrible mother.

Coming home from being at the hospital, my son would run away from me, coming back to the hospital, the nurses made snide remarks about how they couldn’t believe they hadn’t met me yet. Or that I should know fresh breast milk was the best. Or that they are sorry, they fed the baby before I got there, even though I moved heaven and earth to be there for the 3 pm feed.

I was frustrated that every day I was told how to feed the baby differently, or to try or not try to breast feed because it would take all of his energy. It was like they purposefully told me conflicting information every day.

I remember having these achingly sad thoughts of my poor baby alone in his bassinet, and wondered why I couldn’t be trusted to take care of him at home. He was just a feeder and a grower, right??

I also felt like being a doctor was a liability, as if by having a degree automatically put me in the ‘difficult patient’ category, although I had done nothing to deserve such a label. I was just a mom, trying to make it work, missing my baby, feeling deficient that I couldn’t just make it all better, and feeling to my core that everyone was working against me.

Baby Cole spent 21 days in the hospital. We took him home on January 6th, 2019.

I thought that once we were home, everything would be normal. Some things were, no more traveling to go see the baby, no more pumping and freezing, transporting, and making sure that my older son had someone taking care of him. But we also had to start all over again, we were integrating a new person into our family, so our routines changed, the way we traveled changed.

He was a different baby because he was premature, and I felt more anxious. I worried about how much he ate, about putting him down to sleep without me right next to him. I worried about taking him out in public because I was more worried about him getting sick.

Since I had to take time off at the beginning of my pregnancy for the bleeding issue, my ‘at-home’ maternity leave was cut short. I went back to work exactly 6 weeks after he came home from the hospital. I felt robbed of the time that should have been spent snuggling with my baby, and will forever be frustrated by the lack of compassion from the ‘system.’ In addition, sleep-deprivation ruled my life at this point, as baby was waking up every 90 minutes, so my ability to handle life’s obstacles was greatly diminished.

There were things that were good. We matched with an Au Pair, Melissa, from Colombia. She brought a joy and compassion to our lives that I was unable to provide at the time. I feel so lucky she was the person to come into our home less than a week after Baby Cole came home. When I cried after I spilled an entire container of breast milk, she and my husband cried with me, knowing that it wasn’t about the breast milk. She also consistently offered to take the baby at night, so I could get some sleep.

I also have found that in challenging times, my husband and I grow closer. We definitely feel friction and struggle, but in the end, our bond is stronger. I think we love each other more as we see more clearly we are each trying our best, and that matters to us. I also think that we realize there is no one in the world we would rather go through such hardships with. Things can be awful, but awful can be enshrouded with love, care, and empathy.

So here we are, the last 12 months was a blur, filled with many heart-breaking lows. 

I’m happy that the year is coming to a close and I am grateful that life is much easier than 12 months ago. I am also grateful for the experience, as I think it will forever make me a better doctor, mom, wife, and friend.

This morning my one year-old woke up crying, way too early, around 530. I brought him into bed with me, stroked his head as I sang to him and fed him a bottle. My 3 year-old came in soon after, slipping himself between my husband and I. We listened to “Let It Go,” at my older son’s request, and for the moment, I realized, this is happiness.

Residency Memories–A Look Back

“Every Intern makes mistakes. The important thing is to neither make the same mistakes twice, nor to make a whole bunch of mistakes all at once.”

—Samuel Shem, “House of God: The Classic Novel of Life and Death in an American Hospital.”

 

It’s July. Our 2019-2020 academic year has officially started, and my days in the emergency department are spent with our new interns and newly matriculated senior residents.

I’ve been thinking a lot about residents and my time spent as a trainee lately. Mostly this stems from the fact that I am having a harder and harder time identifying with my former self, and I’m trying not to let the memory of my experience fade. Each year it seems that I am becoming increasingly forgetful of the pain and trauma. The wounds heal and it becomes almost impossible to go back mentally or emotionally. The upside is that I don’t re-live it, but the downside is that I can’t identify with those I am trying to teach.

Right now, I am far enough out to critically look at the unique stressors and emotions that were present at the time, but I am still close enough that I haven’t forgotten.

I began my residency in 2003, sixteen years ago. It seems like such a long time has passed, but I find that if I try, the memories are still very vivid. If I try, I can rewind my life and all of the feelings come rushing back. All the suffering, the misery.

I have pushed it away for so long, but I think it is time to examine those emotions a bit. Not only for me, but for all my trainees. We as attendings need to remember what it was like, how hard it is, so we can be more compassionate towards those coming behind us.

Pressure –There is so much pressure. Medical school is challenging, lots of studying, lots of time spent, but as a student you can choose how much and when you will study. The amount of effort you put in determines your grade. As a resident, things are different. The rules that guide us through this time are very strict and it starts with the Match. Upon participating in the nationwide system that places each of us in a residency, you are signing a contract. You are required to show up to the place you matched in June of your graduating year, for a start date of July 1. All over the country, thousands of new doctors are relocating, showing up at their new places of work, right on time and ready to go.

I moved from Kansas City to Connecticut in the summer of 2003. Before residency applications, I had never even been to Connecticut. Fortunately, my mom was willing and able to join me on my trek east. We loaded up my car, shipped about 25 boxes to my new address, and drove. On arrival in my new city, I had 2 days before I was supposed to be at the hospital. We went to Target and Macy’s, bought everything for my apartment. When I went to work, my mom settled me in. She put curtains on my windows and unpacked most of my boxes, so I could find my dishes and get ready in the morning.

There is no wiggle-room, no compromise. The dates are carved in stone, as are the times and the schedule. You must do what you are told to do. You are given a salary, the same as everyone else. You feel like a slave to the system, and it is suffocating.

Judgement—Upon arrival at this new job of residency, you feel like you are trying to prove to everyone that you are smart and capable enough to be there. No one knows you, and so it feels like every day, every interaction with an attending you have never met before, a nurse or a fellow resident, you are being judged. You do not want to be labeled ‘the dumb resident who doesn’t know how to order Tylenol correctly.’

I learned very quickly not only that I was constantly being graded, criticized, and scrutinized, I was also learning to apply the same principles to others. Even though I was supposed to be learning how to be a good doctor, I felt as though I was being judged as though all of it was already taught to me. It felt like there was no room for error. On my first shift in the ER, the attending rolled his eyes at me when I tried to present a patient and I wasn’t sure what to do. It was a case I had never seen before, but with his body language and condescension, I felt inadequate for not knowing. I learned to fake it and pretend as though I didn’t see the eye roll, or the obvious looks of disdain.

Exhaustion—I was tired all the time.  Residents work so hard. When I started my residency, they had just passed laws governing how long we could safely work (limited to 30 hours in a row in 2003) and how many hours we could work in a week (80 hours). Coming from medical school, you know the work hours are arduous, but haven’t had to actually work like a resident month after month. Our bodies and minds aren’t quite ready for the massive shift in work that is required. And then there is no real time for rest. Work weeks are 6 days long with one full weekend per month off. We would get two weeks of vacation a year. It’s dizzying.

I distinctly remember walking to my car after one really long and busy call night. I was so tired, and feeling like a failure. On rounds that morning, when asked a question about the differential diagnosis of a patient I had admitted the night before, I stumbled. I remember feeling my face go red with embarrassment as my mind went blank. Then, in front of everyone, I was reprimanded for my lack of knowledge and preparation. I wanted the floor to swallow me whole.

That afternoon, I got to the parking garage and couldn’t remember where I parked 30 hours before. My pungent, tired and emotionally-drained self, broke. I walked through the parking garage that day crying wet hot tears of frustration until I finally found my car and drove myself home. I went back to work the next day and just kept going. You start to forget that life exists outside of this never-ending cycle of long days, little time off. You do really start to eat, sleep and breathe the hospital. There is no other way.

Fear—My residency was in Pediatrics, so upon starting my intern year, I was now responsible for taking care of children. CHILDREN. I was 24 years old and felt as though I had no idea what I was doing. I was terrified of everything, but most specifically of hurting a child. I was worried I wasn’t good enough, that people would think I was stupid or that I shouldn’t be there (enter imposter syndrome).

One night in the Pediatric Intensive Care Unit, I was the senior resident on call. During those months, back in the early 2000s, the attending physicians did not sleep in the hospital, they stayed at home and we would call them for advice. I remember I had a patient one night, by myself, who had rising intracranial pressure. I was trying to medically manage her, but nothing was working, and her pressures kept climbing.

Although I wanted to run and hide, to walk out of the ICU, I stood at the edge of her bed, praying that she wouldn’t die while I waited for my attending to get there. I don’t think I had ever been more scared in my life. Fear seemed to accompany me like a friend, always there, but only making an appearance when things got really bad.

Grief—Working long hours in a hospital comes with it many patient stories, some good, some horrifically awful, but it feels like there is always sadness. Hospitals aren’t really happy places anyway, but in residency it feels like we operate under a cloud of grief. There is just not enough mental space to process everything. I think that grief gets processed last and the least, because it is the hardest.

Death is ever-present and we all remember the first patient we have that dies. Mine was a baby. The baby contracted herpes at birth and over the course of a few days went into multi-organ system failure. I watched as his little body became bloated with fluid as we tried everything in our power to reverse what the virus was doing. After he died I didn’t know how to grieve. I also didn’t have time to grieve, but I was overwhelmed by the sadness I felt by my inability to save him, but also by having to watch him die.

No soft place to land—Looking back, I think this is the hardest. I didn’t have a good support system. I was single, so I didn’t have a partner to talk to. My parents are non-medical, and lived 3000 miles away, so they didn’t understand what I was going through. I had co-residents, but I think we were all trying to survive ourselves. We could commiserate with one another, but none of us was capable of providing the amount of support we each needed individually. The system isn’t forgiving, and that can leave all residents (particularly the soft-hearted ones) feeling abandoned. We have such desires to heal and help and cure, but when we don’t have space to learn from all the experiences we have, we become detached, despondent, and can suffer mental illness ourselves.

My last thought is that I am astonished that I made it, that I had enough resilience to get through.

For the newly minted resident—it gets better. You are enough, and you are a resident because you were smart enough to get there. Your job now is to grow and learn.

I want to remind myself and all of my colleagues that residency is hard. It is unforgiving and emotional. DO any of you have experiences from residency that you would like to share?

Next time, how we can be better as attendings for our trainees.

Jesus Loves the Little Children, All the Children of the World

“Anyone who does anything to help a child is a hero to me.” –Mr. Rogers

 

“There can be no keener revelation of a society’s soul than the way in which it treats its children.” — Nelson Mandela

 

They were a family. Five children, brought into the Emergency Department by a Child Protective Services worker. The oldest was 12, the youngest just 2 years. They had been found by a neighbor, living alone in their house for what looked like days or weeks. Mom and dad were nowhere to be found, but there was a known history of drug addiction and mental health problems. My job was to examine them, treat any obvious medical conditions and send them on their way, to be placed in foster care.

My heart broke as I looked around the room to my wide-eyed, solemn patients. Their faces were grime-encrusted, their hair matted and lice-infested. The oldest one sat on the bed, refusing to look at me or answer my questions. The smallest grabbed my leg, just trying to get my attention. I quickly thought about my own children at home in their beds, clean and warm. No mother in her right mind would ever allow her children to live that way. I ached to take them home with me, bathe their little bodies, scrubbing the dirt from under their fingernails, combing the lice from their hair, and wrapping them in big blankets to read stories before bed. I longed to be the one to tell them, ‘it’s ok, your mom is coming to get you, but you can stay here until she does.’

Once a mother always a mother. We look out for our own as well as other people’s children, because we are the ones who so intimately know how extremely fragile children can be. Little minds are undeveloped. Children don’t always understand everything that happens, so it is up to us as their parents and caregivers to guide them, explain things, keep them safe. I didn’t know what to say to these children because I didn’t know what their future looked like and I had no power to ensure that the next person they encountered would care for them.

I went into pediatrics because of the innocence of my little patients. Adults are maddening. They drink and smoke and don’t take their medicine and then lie about it. Adults don’t go to the doctor for years, and then wonder why they face things like heart disease or cancer that didn’t get diagnosed earlier. Children, on the other hand, are honest and silly and incredibly stoic when in pain. They listen and take direction and often just want to feel better. Children tell you where it hurts and are easily comforted with bubbles and stickers. Their illnesses are never as a result of poor lifestyle choices and I find myself doing everything in my power on a daily basis to diagnose, treat and care for each child to the best of my ability.

We have recently heard accounts about immigrants at the border, especially the children. Personally I have been unable to spend too much time thinking about these children, these babies, because it makes me nauseous and panicky as I consider the conditions they are in. I think about my patients, the family of 5, and I know that the children at the border are experiencing worse. Much, much worse.

I don’t know how any mother anywhere is comfortable with the reports we are hearing. Sleeping on concrete floors, little food, no soap or showers or blankets. Conditions that adults would find unsanitary and unlivable are ok for children because they don’t have voices, or because their families were fleeing to a place that might be safer than their home? Children don’t choose their situations. They don’t choose to be sick, and they don’t choose to be taken across a border. As adults, we have a moral responsibility to treat them humanely and with as much care as possible. It is what we would wish for our own. And who are we if we continue to allow it? Who are we if we don’t speak out against it?

Last summer was my last summer working as the medical director for a summer camp for children with medical diseases. I left my home for 3 days at a time, on 3 separate occasions. Each time when I returned, my toddler, who was 20 months at the time, was different. He ran away from me, refusing my hugs, screaming when I tried to kiss him. It was like he didn‘t know me. I was shocked at his reaction which I quickly realized was anger at me. He was mad at me for leaving, probably even thought I had abandoned him. When I came home he needed to let me know how mad he was. It took me a few hours for him to let me hold or kiss him, and it wasn’t until the following day that things felt normal.

These children are taken away for weeks in some cases, forever in others. I don’t know how their parents make it through each day. As a mom and a doctor I am apalled this is happening in my country. The amount of unnecessary and purposefully inflicted pain on the most innocent and most vulnerable is an atrocity that none of us should allow to continue. We should all be ashamed that it has been allowed to happen, and we all should be using every voice, everyday,  to protest in every way we know how.

It is hard, but I am forcing myself to not look away, to donate money to RAICES, and TogetherRising, to speak out, to maybe convince others to do the same. How are you responding to our crisis?

 

‘Thus says the LORD, “Do justice and righteousness, and deliver the one who has been robbed from the power of his oppressor Also do not mistreat or do violence to the stranger, the orphan, or the widow; and do not shed innocent blood in this place.” Jeremiah 22:3