Snowflakes on the Ceiling: Maternal vs. Medical Protocol

December 5, 1986, Saving Laura’s Life, Part 4

Snowflakes on the Ceiling: Maternal vs. Hospital Protocol

A gentle snow continued to fall and spread with slow accumulation over what we could see of the unchanged world, from a small window with the worn and somewhat frayed shades in a room filled with tables, chairs, toys, book shelves, and art supplies. Paul and I would be told that this was the cardiac unit playroom. “You can stay here tonight," directed a kind hearted nurse who understood that we would not be leaving, given the snow and the unlikelihood that we would even entertain the thought of leaving our infant daughter alone at the hospital without her parents. 

                        ***

It was early evening in this long and protracted first day of Laura’s hospital ordeal. The day had begun with a drive to the new pediatrician for a second opinion where we would be told, there is something wrong with your baby’s heart.  The doctor instructed us to go immediately to Boston Children’s Hospital, which led to examinations, cardiac tests, and a diagnosis too complicated for us to grasp, ending with Laura’s admission into the hospital. The staff of the cardiac clinic and Division 35, the cardiac outpatient unit had witnessed first hand, the two of us being shocked, stunned, and overwhelmed. As we were led through the process, they saw us as both compliant and resistant, until we finally had to surrender to the rules and protocols that were all a part of our indoctrination into hospital culture. 

The looks on our faces must have emanated utter confusion, disbelief and sadness when the doctors presented us with daunting medical facts, heart defect diagrams, and surgical consent forms for our baby’s upcoming procedures. This would mark the beginning of Laura’s treatment for a heart condition. We were given a diagnosis, one too complicated to comprehend let alone repeat or remember; Complicated Complex Congenital Heart Disease with Single Ventricle, Hypo-plastic Right Heart Syndrome. There was the mention of Laura also having Transposition of the Great Arteries, an anomaly that by nature’s design had helped her heart compensate for the other defects during those first 4 1/2 undiagnosed months. We were told that Laura was living with a loud heart murmur and was being flooded with a mix of too much blue blood, which contributed to her being in congestive heart failure during all this time of a missed diagnosis by her first pediatrician.

By late afternoon, when all the tests were complete, the cardiologists were busy making plans for Laura’s treatment, while the nurses were busy settling Laura into her hospital room, attaching her to a heart monitor and prepping her for procedures. Paul and I were mostly pushed to the side lines to wait, worry and wonder. Throughout the day we had complied with doctor's and nurses' requests; to leave Laura’s room, come back in a bit, head over to a parent waiting room, and go to Admitting to provide insurance information. We were herded in and out of a small room called an interview room, to hear medical details and projected treatment plans for today, tomorrow, and the days to come. By early evening we had signed two consent forms for procedures our baby would have to undergo; a cardiac catheterization the very next day and the Pulmonary Banding heart surgery a few days later.

A range of emotions took hold of us that first day. Some were unfamiliar since they were never felt before. Deep worry for the well being of our baby gave way to more complicated emotions when we were suddenly faced with life altering decisions that required on the spot approval.  In addition to this, we faced limitations and restrictions to parenting, which inevitably required us to surrender to our doctor’s orders and hospital protocols. Some we willingly obeyed and others we vehemently resisted. One command seemed particularly inhumane, the one that took away the basic right of a mother to feed her young.

The night nurse attempted to hand me an empty plastic container before instructing me to  follow her to the lactation room and use the breast pump to express some milk for Laura. I wondered if the nurse thought it was resistance she was seeing when I balked at her words, then backed away as she reached toward me with the container.  

“What for?” I asked, “I will just feed my baby the way I always do, by nursing her.”

She continued talking, ignoring me. “You can fill up this container. Later I will give you another one, so that we can continue giving Laura your breast milk while she is here in the hospital,” she said,  half looking at me and speaking in a matter of fact way. I did not reach out to meet her extended hand to take the cup. 

“ I donʼt understand. I am here, and can just go into the room to feed Laura when she is hungry,” I said while standing in the doorway motioning my hands toward the crib that housed Laura.  “I think she will be ready to nurse again in an hour or so since I just fed her, so expressing won’t be necessary.” I stated this with maternal certainly.

  “Oh, no,” she said.  “You canʼt be nursing your baby anymore! Didn’t the doctor tell you that we will need to measure every ounce that your daughter takes in from now on, since there is no way to know how much she is getting if you breast feed her?  This is her new protocol, so let me show you where the breast pump is so that you can become familiar with it and get started right away. Have you used one before?” she asked, 

“No, I never needed to use a pump. I hand expressed sometimes so Laura’s Dad could feed her once in while, but I never used a pump,” I answered as she walked me down a long corridor. 

Dazed and exhausted from this already too long and surreal day which began at home in the morning, and ended up with our critically ill baby being admitted into the hospital for emergency care.  That was already too much to bear, and now this!  Now we were being  escorted to where mothers pump milk. We had already traipsed down several corridors, went in and out of elevators, from one examining room to another, and to Laura’s inpatient hospital room, which we had hoped was our final destination. It was now just after 8:00 PM, when I was being directed, commanded actually to go to a new location where mothers express breast milk from some kind of a pumping machine. Distraught and exhausted, I followed the nurse down the hallway feeling as though I was on a slow treadmill that moved my feet forward even if the rest of me did not want to go. 

“Come on,” the nurse said, “I have lots of things to do, so let’s make this quick!” 

 I looked behind me to see if Paul was still there. Reaching out, gesturing for him to keep on following me, I was jolting him out of his own hospital stupor, and speeding up our steps, putting us both into automatic mode, from a place of obedience to orders, instead of free will. 

A sign on the door read, Lactation Room, which turned out to be a closet sized, seemingly sterile room with a strange looking machine that appeared mechanical and artificial, in direct opposition to putting oneʼs baby to an actual breast, what mother nature designed for feedings. I was standing there with two mounds on my chest meant for feeding, swollen with milk and being told not to use them for feeding my baby anymore,  just like that! Four and a half months of breastfeeding my baby was being called to an end, demanded to end, due to a doctor’s order and medical protocol.    

On July 13, 1986, the day Laura was born, my breasts felt unfamiliar to me. I learned that this fullness was called engorgement, a signal that my milk was coming in. I somehow made it through those awkward first days of trying to get my newborn to latch onto my nipples properly, and the embarrassment of another womanʼs eyes looking at me while I learned to nurse my baby. The lactation nurse at South Shore Hospital took her hand and tweaked one of my nipples to the side to show me how to direct the flow of milk into Lauraʼs mouth, without flooding her with too much milk all at once, she said. I struggled to get the hang of it, but couldn’t that first day. I was reassured and told not to worry since babies donʼt really need food on the first day, but would need the “colostrum,” the nutritious milky fluid that is released first before the milk comes in.  I made a silent vow to master this whole thing quickly as to avoid another viewing and handling, an invasion to my privacy.  I felt a sense of wonder at this miracle of nature, how a woman’s body is so perfectly designed to meet the basic needs of her offspring. I hoped it would go effortlessly for me and that I would be lucky enough not to get a dreaded, nasty breast infection.

Life seemed perfect when we took our newborn baby home in mid July. During those hot weeks of summer, I was home alone with my sweet new baby girl during the weekdays, together indoors or outside in the shady backyard of our house in Braintree. I spent most of my time holding Laura close to me, nursing her when she fussed, and making sure to drink enough liquids and eat a  healthy diet in order to produce more milk  just as I was instructed. I mused at how fortunate I was that this whole mothering thing came so naturally to me. During those sacred weeks of summer my confidence grew as I embraced the art of being a mother, loving every moment of it. The days were for us, mother and daughter.  The nights were devoted to family time for the three of us; Laura, Paul and me. 

In awe of our baby daughter, Paul and I lovingly and quite obsessively photographed Laura each night, on our bed quilt, or in her yellow cradle seat where we carefully and safely placed her in the middle of our round wooden kitchen table. Every moment of Laura’s young existence seemed photo-worthy. We snapped the shutter of our 35 ml Nikon Camera or our Instant Polaroid Camera, both popular at that time. Those were the innocent  unmarred days of our parental bliss, before worry set in for our daughter’s health. It was a time when life seemed normal for two new parents who were naive to the fact that their baby was actually very sick.  

We had been given the proclamation at birth from our pediatrician,  you have a healthy baby!  As parents of a healthy child, we felt deep gratitude and lived in a bubble of parental pride and joy. Our weekends were glorious! Family and friends came to visit and admired our new baby.  We ventured out into nature, and introduced baby Laura to our favorite nature trails, took late day beach walks with Laura a-fixed to one of us, securely in her Snuggly. We sang songs to Laura and played our favorite folk rock records for her; James Taylor, Neil Young, Joni Mitchell and Bob Dylan. 

When summer ended, so did our calm and confidence. Fall gave way to discontent. Laura was crying more, sweating more, and falling asleep more while nursing. Our carefree weeks gave way to worry and the rise of new fears. We questioned the pediatrician, is Laura really a healthy baby? We asked each other. We asked our family and friends to factor in. They all chimed in with, What did the doctor say? Everyone wanted to believe the doctor, except for my mother who also had her doubts that Laura was a healthy baby. We strained to believe the doctor, until my instincts that told me something was wrong could no longer be quieted.  

Here we were now, admitted into Boston Children's Hospital, on the very same day we took Laura for a second opinion with a new pediatrician. It was all so surreal. This first day at the hospital seemed like an eternity. So much had happened since we only speculated that there could be a medical problem. Yesterday seemed light years away. The only thing I knew for sure at this point, was that just hours ago we had a child who was considered healthy with a suspected problem, who actually has a serious life threatening heart condition. If that wasn’t devastating enough, I was also being told that I was not allowed to breastfeed my baby anymore.

Once inside the Lactation Room, glazing over with exhaustion, I was struggling to stay focused and listen to the nurse’s instructions on how to use the breast pump machine. She left me alone in the room where I tried over and over again, finally succumbing to several failed attempts. Frustrated, I left the room to go talk to Paul who was waiting outside the door in the hallway.  

“ Paul,  I can’t do this! I think I’m too upset, tired and stressed out to do this.  I read somewhere that a person canʼt possibly express milk in this kind of a state. This sucks!” 

Paul put his arm around me, shaking his head from side to side with frustration at the absurdity of our current situation. Then he unleashed his pent up exasperation.

“Is this really happening to us?  How can this be happening?  This is an absolute nightmare and I keep waiting for us to wake up. I canʼt grasp this at all. How can Laura have a heart condition and be this sick?” Paul's words flew out of his mouth like convicts escaping from a prison during a security lapse.  “How could her pediatrician miss this? …  And how did Laura even survive those months with us at home without medicine?” He stopped in exhaustion and despair.  He continued on, “Ideally, Laura should have had heart surgery months ago they told us, and now here she is barely alive and if we stayed with that first doctor she would have been dead in a week. Oh my God! How is it that she is even okay at all, or is she?” 

I was blasted by his words and our reality. “To think that if my instincts had not kicked in that I felt there was something wrong with Laura, our baby could have died at home if we had not taken her to for a second opinion,” I added while standing in the corridor looking at Paul. 

Everything Paul said was exactly what I was thinking but not saying because I had to hold it together, focus on my maternal duties, and my maternal body, in order to try and squeeze some life blood out of my breasts to be put in a bottle for someone else to feed to my baby.  Too upset to make it happen, and angry to even have to, I simply wanted to continue feeding my baby the way I had all along, at my breasts. I was told that I could not continue to nurse Laura, but could still give her my milk. I failed to do this. I just couldn’t make it happen. I failed to meet the task that many other women could manage, the task of pumping. Now there would be no choice. Laura would have to drink formula. 

The nurse found me in the hallway and extended her hand to retrieve what she hoped to be a full cup of milk so she could hand it off to the night nurse assigned to Laura. I told her that I could not do it. She thought for a minute and asked if I knew how to express milk manually. I told her I would try to do this and that I had done it before at home.  After returning to the lactation room I managed to hand express a bit of milk and then came out to hand the cup to the nurse.

“It’s not that much,” I said sheepishly, “ but it is all I can do with the stress of today. Can I feed this too her now in a bottle?”

“I was going to suggest that Laura’s Dad might want to try and feed Laura. We  don’t recommend that you give Laura a bottle. It’s unlikely she will take the bottle from you. Since your baby is used to nursing, she may clamor to find your breasts and it would be counterproductive. The goal here is to get the milk into Laura at this point. Either her Dad or a nurse will feed her from now on.” She stated this clearly and authoritatively.

Then the nurse turned to Paul and said, “ I will come find you, Dad, when we are ready.” 

Paul looked at me as I stood there frozen in place, until I fell back a few inches toward the wall, and pressed against it to hold myself up to keep from falling over. The nurse's words, you cannot feed your baby anymore repeated in my head with horrific haunting proportions. My body ached for my baby. I knew that my baby ached for her mother. It made absolutely no sense to me that anyone would keep a mother from feeding her own baby.  My mind raced with thoughts. I had supplied Laura with this life sustenance in the comfort of my own arms since the beginning of her life, and even up to a few hours ago in this hospital right after the doctors told us the ugly truth of Laura’s health status, her unwell status in actuality.  I had nursed my baby again after she was settled into her hospital crib, just moments before this steel door of medical intervention slammed shut right in front of my face. The person who cared for this baby 24 hours a day for the past 4 1/2 months was being put on the sidelines, benched like a faulty ball player, replaced by less capable or expert players who would pick up the ball and make the next plays.                       

****

While the cardiologists had spent the day examining Laura, ordering and analyzing tests, meeting with the team, and making treatment plans for our baby, the nurses had the job of attending directly to Laura’s needs and to the needs of her parents. The day nurse briefed us on when the doctors would come to speak with us and told us where to go to fill out the required paperwork to formally admit our baby into the hospital. She told us where the cafeteria and bathrooms were, and where the parent waiting room was located. 

The night nurse set out to teach us how to pick up our baby and hold her with all the tubes, IVs and wires. Laura was hooked up to a heart monitor with wires and leads from her chest and abdomen. Her tiny arms and hands were taped with IV lines; one that gave her Lasix, a diuretic to rid her body of excess fluid, and another one that administered a saline drip to balance electrolytes and keep her hydrated.  An oxygen mask covered our baby’s nose and mouth, with a strap around her head. The night nurse had the task of explaining all of this to us, but the most important thing she did that night was to show us how to pick up and hold our daughter safely. First she demonstrated this by showing us how to scoop up all the wires and tubes in one hand, drape them over an arm, and then maneuver each hand under our baby from each side, to gently lift her up while making sure to hold her neck and head up. The nurse did this effortlessly. 

“Now you try it,” she said to us. 

Petrified, Paul and I looked at each other then back at the nurse. 

When she saw our hesitation, she said, “ You can do this together. It will be easier if one of you picks up and holds the wires and IV lines, while the other takes your baby. You can synchronize your movements and one of you can sit in the chair next to the crib, and the other will sit closely beside you. I will stay and help you.  Don’t worry, you will get the hang of it!”

  The crib was made of some type of metal, sterile and industrial looking. The nurse showed us how to bring the side up and down and lock it into place. Paul was taking in the mechanics of it all. She instructed him to grab up the wires and for me to come alongside him to reach in and scoop Laura up. Laura was sleeping and I didn’t want to wake her up. The nurse said it was okay since we needed to learn this, so we could hold our baby and comfort her when she cried.  Together we worked around each other.  I managed to scoop Laura up into my arms after Paul gathered up all of the wires and IV lines.  We stood there each holding a different part of Laura and her medical extensions. It felt good to be holding Laura again, even though it was short lived. 

The nurse told me to hand our still sleeping baby over to Paul so that he could give her the bottle of expressed breast milk when she woke up and cried. We were both trembling at the thought of transferring Laura, but somehow we managed to settle her into Paul’s arms. When Laura did awaken and began to fuss, the nurse asked me to back away so that Laura would not see me. She directed me to come with her across the room to the doorway. 

Whispering to me, she said, “It’s probably best if you leave the room for a while. If you stay in the room and your baby sees you, she will only want to breastfeed from you. It’s important that she takes that bottle and get’s the nutrition.”

I was horrified to be put out of the room again, but I knew I had to do it. Paul looked up at me with an expression of betrayal on his face. I left the room and wandered the hallways stunned, unable to feel or express any appropriate emotions. I realized I had not cried yet,  since we got the bad news. My body must have been in warrior mode, and instinctively knew that tears would have weakened me. Adrenaline took over and gave me the strength I needed to go on. 

When I saw the nurse walk out of the room and head toward the nurses station, I knew that Paul would be alone in there with Laura. I snuck back into Laura’s room, the ball field I had been ousted from, to discover that Paul’s and the nurse’s attempts to feed Laura with a bottle had failed drastically. With maternal will winning over obedience to orders, I unlatched the crib, pulled down the side, and reached inside to pick Laura up by myself. Paul jumped up to help me, then realized that my determination was not to be interrupted.  I carefully took Laura into my arms and sat down in the chair next to Paul. I placed my baby to my breast to feed her until moments later, when I was caught and scolded by the night nurse. 

“Oh no you donʼt,”  I heard the nurse’s voice and looked up as she entered the room. She lunged over to reprimand me, and to try and take my baby away from me, which made me hold her more closely and tightly to my body, until I finally surrendered.

“ Okay! Okay! Can I at least hold her?  I promise not to try to feed her again, but seriously I don't understand what harm this would do if the main priority is to get milk and nutrition into her. She isn't going to take a bottle. We tried at home many times and she is just too used to nursing. How can this matter, really?” 

“We can’t measure her input if you nurse her and the fluid balance is crucial. It’s about  “input and output,” to know how much liquid goes in and how much comes out. We carefully measure and record how much milk she drinks and we weigh the diapers too. It’s a delicate balance. This is how we calibrate her diuretic doses properly,” explained the nurse to a mother who just wasn’t in a space to understand. 

“Can’t you just estimate it? Besides, my baby is used to being nursed and she needs the comfort of her mother now. Donʼt you think this is scary for her, being in the hospital?  She is crying and needs me," I pleaded.  

  The nurse looked at me and paused, as if stumped at how to handle this rebellious mother, or maybe this was a moment of compassion, I wondered. It turned out to be the former.

“ Your baby is too young to know what is going on and she will learn to take the bottle soon enough if she gets hungry enough.  From this point forward, if we see you trying to feed your baby again, we will not be able to allow you in her room,” she said, then turned away and left.

For me, this was foreign. To the hospital, just routine. We had crossed over the border to a foreign land, a subculture that turned us into parent bystanders, while the doctors and nurses put into motion the necessary and emergent steps needed to start Laura on a track towards health.  Lauraʼs life would hopefully be saved, but there would be real collateral damage, an emotional price to pay for this ticket to better health with medical intervention. This new world we entered was full of rules, protocols and regulations. It was a system and an institution that placed Laura's parents in a secondary role where we would be allowed to stay, only if we complied with the rules. The hospital was in charge and the doctors and nurses were calling the shots.  I struggled with conflicting emotions; of gratitude to a dedicated and renowned team of doctors, with feelings of despair at losing my role as primary caretaker to our baby. I lamented about the sadness of not being able to feed my baby that night, and for all the following nights we would spend in the hospital. In my heart, I knew what mattered most was that the doctors and nurses were going to do everything in their power to save our daughter’s life.  

What we didn't grasp at the time, was that just because we finally got Laura to the hospital, it didn’t automatically mean that she would be ok.  We felt that we were accomplishing something, trusting that we got her the help she so desperately needed, and that Laura was now in good hands. In reality Laura was not okay by any means. She was on a dangerous threshold that only the doctors were fully aware of when they scrambled behind the scenes to get all the plans made and the procedures put in place in the most emergent ways possible — to try and save this infant in severe congestive heart failure; the tiny, brown eyed, fuzzy black haired baby girl’s life. 

We didn’t fully realize that Laura could still die at any moment even though we had reached the oasis of medicine. Things were just that tenuous. Later that night we would come to read Laura’s chart that hung on a clipboard outside her hospital room, specifically the hand written notes at the bottom of the page; an unfortunate infant in congestive heart failure and flooded with blue blood for far too many weeks due to a missed diagnosis.

  It was getting late and we had been so caught up in our ordeal, that we didn’t have a moment to even think of reaching out to our families. Realizing they must be wondering about our appointment and worried that they hadn’t heard from us, Paul and I attempted to make our first phone calls to both sets of parents and a few close friends. This was well before cell phones. The only phones available to us in the hospital were pay phones. We were able to locate one near the elevators. It lacked any sort of privacy, but served as our only life line to people outside of the hospital. We put some coins into the phone and made our first collect call to my Mother, then Paul’s mother, then Peggy, then Michael, our two closest friends. A phone call chain would be put into place with each of our mothers calling our siblings and other relatives, while our friends called other friends. We could only imagine the shock and despair that would be felt by everyone, as our news spread from Maine to New Jersey the radius of our loved ones’ residences. 

Bad news tends to spread faster than good news. I contemplated how we had received the bad news of this serious diagnosis, something we could never have imagined we would hear, with a medical condition completely unknown to us. It felt like the worst day of our life. Later I wondered if what then seemed to be the worst day of our life may have actually been the best day of our life, since this was the day Laura got the medical help she needed. Paul and I were reeling with devastation at the news, so we couldn’t fully appreciate the good part yet, since we were stuck in a state of fear. Paul and I were both 29 years old, each having lived through our own versions of worst and best days, good and bad days, and many ordinary ones in between. Later we would learn that for our little family of three, there would be no ordinary days, and many more worst days and best days, bad and good days to come, but we wouldn’t be counting them or keeping track of them since it would have been way too painful. I came to realize that good times and hard times were not necessarily doled out in equal portions to humans, like pieces of cake at a birthday party. 

After we made the phone calls, Paul and I wandered helplessly up and down the corridors talking and commiserating with one another until a nurse stopped us and said we needed to go to back to our child’s room or to the parent waiting room, because we couldn't just hang out in the hallway.  We were in a hospital, in a boat without oars, hoping to find a place to sleep for the night. It was 1986 at Boston Childrenʼs Hospital, and on Division 35, the cardiac wing there was no such thing as a parent sleeping in the room with their child, or any other place for parents to stay at the hospital if they could not bear to tear themselves away from their sick child. A list of nearby hotels were provided to us in our admissions packet along with a lot of other information. I closed the folder, refusing to look, not wanting to be a part of this world, the antithesis of the bubble we had been living in at home.  That world; our home and the snow ridden outdoors seemed so far from the world we were in now.

We returned to the room and sat by Laura’s crib for hours, praying and consoling one another and mainly just staring at our baby while she slept, feeling despair at the sight of her frail body hooked up to medical devices.

When the night nurse came into the room to check on Laura, it was after midnight.  She whispered, as to not wake up Laura, “Tomorrow is going to be a big day for you all, and you need to get some rest.” 

Breaking some rules, she brought us two pillows and four blankets in order to allow us to sneak a sleep space on the floor somewhere in the hospital.  Maybe she realized how traumatized we were, that we would never leave the hospital without our daughter.  She had given up on her previous suggestion for us to go home or to a hotel.  Showing Paul and I some much needed compassion, she asked us to follow her to the unit’s playroom. She unlocked the playroom door. 

“You can make a bed on the floor for yourselves if you remove the couch pillows,” she said while pointing to the far side of the room. “Make sure to keep the lights off in here so you don’t draw any attention. I am not really supposed to let anyone in here at night.  Another thing, you need to be out by 6 am before the cleaning crew comes in. Got it?” 

We nodded and thanked her. It was 2 AM when Paul and I finally made ourselves a bed of couch cushions on the floor, where we would lay beside one another on our backs, silently looking up at the ceiling, just staring and watching the large suspended paper snowflakes dangle back and forth to the wind made by the heating vent. As the glittered paper snowflakes swayed and danced in the breezy ceiling air, it seemed so peculiar to me that I was lying on a floor with the harshest of news in my head, with my painful engorged breasts, staring at these whimsical snowflakes dangling above. I turned to Paul and smiled and said, “I think this is a sign. Maybe it means that Laura will get better and get to grow up … and cut out her own paper snowflakes one day.”

Click on the links below for relevant information.

Medical Terminology:

Congestive Heart Failure - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4923615/

Congenital Heart Disease, https://www.ssmhealth.com/cardinal-glennon/fetal-care-institute/fetal-heart-program/heart-issues/hypoplastic-right-heart-syndrome

Pediatric Fluid and Electrolyte Therapy-  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3460795/

Breastfeeding in the Hospital:  Keep in mind that protocols were very different during the 1980s when this story occurred. Here are some links to current guidelines.

https://www.cdc.gov/vitalsigns/breastfeeding2015/index.html

https://www.breastfeeding.asn.au/resources/going-to-hospital