Fear Takes a Home: Into the Blue

Series:Saving Laura’s Life, Part 5

Fear Takes a Home: Into the Blue

Saving Laura's Life, Part 5

Susan Fusco-Fazio 

December 6, 1986, Day 2

I awoke sometime before 5:30 a.m. and suddenly realized where I was. We only had a half hour before we would need to leave the make-shift bed we put together on the floor in the Division 35 playroom. Hearing the tapping of shoe steps, I looked to see the vague shapes of figures walking quickly past the large etched glass window that separated the playroom from the hospital corridor. I turned my focus toward the ceiling, to the paper snowflakes that had soothed me to sleep just hours before.  Like me, they were now still and quiet as if they too needed a moment of rest and repose before the busy day ahead. I too was still and quiet and relieved to have a few minutes to rest. The snowflakes began to stir when the heating system cycled back on, creating a hum and a breeze across the ceiling. The room felt warm at least, actually too warm. I gently removed the upper half of the blanket and brought my hands together in an attempt to pray, which came automatically given the situation.

I wasn’t the daily praying type. This may have been due to the fact that my life had mostly been filled with blessings up to this point.  There had been some hard times; escapades that resulted in accidents, a share of disappointments, heartbreaks, and a few traumatic situations.  I usually saved prayer for times of crisis, or when I found myself in church for holidays, weddings and funerals.  Paul and I had each broken away from our childhood traditions of attending weekly Sunday mass in the Catholic Church.  We had both attended a few weddings in our families, but were the first of all of our friends to marry. Each of us suffered the loss of some grandparents. I recalled praying for my paternal grandfather while in high school and my maternal grandmother shortly after college when they were each sick. I had grieved the loss of my cousin and a high school friend, when each had died abruptly in unrelated car accidents during our college years. I also prayed very hard when two mothers I was close to each lost a baby, one before birth and one shortly after. Though the prayers of my past had been earnest, they were not in any way comparable to the kind of desperate prayers and pleas I would be making today here in the hospital. 

  There had been one emphatic prayer session that came close to how my prayers would be today. It was only two days ago when I asked God to give me the wisdom I needed to help my coughing, sweating, and constantly crying baby who I suspected was sick.  I had prayed with all my might while lying in my own bed at home, what now felt like an eternity ago. I truly believed that my prayers were answered that day, that God gave me the insight to seek out my birthing nurse and coach. It came to me to call Ruth; which led to a second opinion and Laura’s admission into Boston Children’s Hospital for a diagnosis and treatment.  The momentum of those prayers was like the speed of light.

What lay ahead felt even more frightening. I anticipated the day's urgent procedure for our infant daughter with life threatening heart disease. While preparing to make a monumental request from God, it came to mind that there were countless mothers all over the world who would also be praying for their children at this very same moment. I humbled myself and tapped into my faith as I forged ahead with my prayers, fully believing that my prayers for Laura would be heard.  I implored God, Please help my baby get better. Please don’t let our baby die. Please let me continue to be Laura’s mother.  I made promises and bargained with God; to be the best mother possible, to go to church more often, to be a better person. If God would let us keep our baby, I would commit to helping others more. I prayed for Paul and for myself to be strong, for all of the doctors and nurses, and gave blessings of gratitude to those whose guidance brought Laura to this place of safety and medical brilliance. I prayed for the success of the upcoming catheterization and heart surgery, for the best possible outcomes. I made one final emphatic prayer for God to save Laura’s life.  

My prayers had been delivered, yet no calm or relief came to me. I knew in my mind that I needed to have more faith, but dreadful feelings of anxiety took me over. I felt shaken to the core. My body became cold, the room looked blurry and I started to tremble. I felt the pain of my baby who was separated from her mother, and was down the hall fighting for her life. I felt a deep maternal ache from not being able to hold my baby close to me, or to nurse her any more. The physical pain of my engorged breasts added to my misery. 

I took a few deep breaths in an attempt to calm myself down. I felt a stretch like twinge deep within my chest, as if my heart was expanding to make room for a demanding new visitor. I honed in to hear its voice. It was FEAR. I felt my body try to reject it. My mind struggled to manage this dark emotion as it took its place firmly inside my heart. Fear had come to live with me, and I sensed it wasn’t leaving anytime soon. 

Fear had pushed its way into a heart that was mostly familiar with the good feelings of love. Fear planted itself right next to a recent welcome resident, maternal love. This all encompassing maternal love had taken hold of me right after Laura was born, and even before during pregnancy. I had embraced motherly love, a love so deep that I never dreamed possible, a love that was beyond any love I had felt before with Paul, my family, or my friends. This maternal life force that emanated from every pore and breath, made a huge sigh of resistance at the prospect of sharing space with this dreadful new entity, FEAR.

I turned my head to look at Paul who was laying beside me, still sleeping, completely unaware of my tormented state. I decided not to wake him. I tried to remember how I usually calmed myself down when I was this upset, then realized I had never been this upset before. I closed my eyes to see what might come to me. I saw the color BLUE.  I allowed this patch of blue to permeate me. It was beautiful and calming, like cool ocean waters and fair weathered skies. My inner vision grew to see all sorts of shades and hues of light blue, medium blue, and dark blue. I saw my oil painting colors; manganese blue, cobalt blue, azure blue and cerulean blue. My mind conjured up a giant floating canvas being covered with brush strokes and patches of blue in as many different sizes, shapes, tones and hues that I could imagine. Some blues were soft with  blended edges, others were strong and stark. This giant blue painting in my mind was calming me down and distracting me from my compromised state. I wanted to stay in this space of inertia, of a soothing fantasy. I knew I would soon be leaving this comforting vision to face my stark, foreboding reality. It was going to be a hard day and the realities could not be avoided. I felt as though I would never have the strength to leave this floor and get up to face what lay before us. I would have to figure out a way to transition from this moment, from this calming alternate reality.  I decided to take a few more minutes to paint the painting in my mind, and continued to envelop myself in the soothing patches of blue paint for just a little bit longer. I should paint this someday, I told myself before taking in one last look at my imaginary abstract painting, imprinting it into my memory, and giving thanks for my prayer and paint session.

I realized I had done this sort of thing once before, during the hours of labor preceding Laura’s birth. Ruth, the birthing nurse and coach suggested that we each choose an image to use for visualization, one that was meaningful or compelling enough to divert attention away from the pain of labor.  I originally planned to use a photograph of a sunset taken over the ocean on our honeymoon in St. Maarten.  It didn’t work to keep my attention when I was at home and at the beginning of labor. While Paul counted the time between contractions, I anxiously searched the house for a better image, until I came upon a postcard in my painting area. It was a painting of a woman sitting by a river made of abstract shapes of color, created by the artist Gregorio Prestopino. I took the push pinned post card off the wall, held it in my hands, and stared down at it to see if I could imprint the colors and shapes into my memory as Ruth suggested. I closed my eyes in order to play a sort of game, to see if I could recreate the image in my mind. I immediately knew this was the image that I would take to the hospital to use during labor. I was able to alternate my focus between staring at the Prestopino painting and closing my eyes to try and imagine each shape and color. When I got stumped, I would open my eyes to study the missing details, imprint them into my mind and close my eyes again to try and visualize the painting, all while deep breathing through heavy labor contractions.  

Still lying on couch cushions on the playroom floor, I knew we only had a few more minutes before the cleaning crew would thrust open the door and signal us to leave this cocoon of a space. With time running out, I turned to wake Paul, gently tapping him on his shoulder. He made some sighs and sounds that I imagined could come from a butterfly during an awkward emergence from being cocooned in a thick protective sac before finally making its way out and into the world.  Paul stretched his arms, shook his legs a bit, then trembled as he rolled over to meet me in an embrace that would be difficult for either of us to let go of.  

Then Paul spoke, “I don’t want to wake up to this. Can’t we go back to sleep and pretend this never happened” 

 I shared his sentiment completely, but wanted to remain in the state of calm I created while he was asleep.

“I feel like we are in a living Hell and there will be worse to come,” Paul added.  

I felt that he could be right, but I had worked too hard to shoo that demon of extreme fear away. I was one to store up my endless internal dialogues, mostly not shared. Paul had the uncanny knack of describing his darkest feelings and of stating the obvious difficulties, things that went wrong or could go wrong, while I was afraid to speak of them, for fear that if spoken, they would come true.  I became the one who voiced the most positive potential outcome while secretly storing strong fears inside. While Paul wrote down lists of the potential hazards and recited his worries out loud, I counteracted and voiced best case scenario outcomes, the ones I had vehemently prayed for, stating them as if they were going to happen. Sometimes we settled into a mutual perspective, which was somewhere in the middle;  being worried together while holding onto optimism and keeping our eyes on hope, our credo and motto for going forward together.  

This day was in fact, a day that we would all have to endure more than we did the day before. This was the day that we would need to hand our baby over to anesthesia and a cardiac catheterization procedure that was at the top of the cardiac teams’ emergent list for Laura.

“Ok, let's get up,” I said in an effort to direct us both. 

Paul went into task mode, clearing blankets and bed cushions from the floor and reformatting the playroom couch for the upcoming day.

“Do you need more ice?” he asked after noticing me grimacing while rising from the floor and making my way over to sit on the freshly made up couch. I nodded an affirmative yes.  “How are you feeling?”

  “Lousy!” I answered. I was in a state of suspended pain, in my body and in my heart. 

I watched Paul leave the room and return shortly with two plastic baggies of ice that he got from the nurses station. I placed the cold baggies over my miserable aching body parts, the ones that nature intended for me to nurse my baby with, now a forbidden territory, and soon to be a wasteland of dried up milk. ~~~~

“Your baby is BLUE.  The medical term for this is cyanotic.”  Dr. Roman explained to us.  “We want to help Laura become PINKER,  if I am to put this in simple terms.  Her atrium has been flooded with too much blue blood for the past several weeks.” He began to draw a diagram of Laura’s heart as he spoke. “See the position here of her aorta and the pulmonary artery. They are basically switched or in opposite positions than nature intended. However, it was nature's way of compensating since there is no right ventricle, or rather a small malformed nonfunctional one.  The switched arteries helped to keep some of the pink blood flowing in some ways that are useful to the heart.”  He began to fill in the heart chambers with blue and red markers, to connote the flow of blue blood and red blood, then looked up at us to see if we were following him. This was just one of many drawings of Laura’s heart that we would see that week, that I would stash away in my purse to save for later.  We wondered why Dr. Roman was on repeating the things that Dr. Long had told us the previous day, though we were glad to have this gone over again. We had not even begun to grasp the situation. Paul and I always looked on attentively and with dread, as the cardiologists drew diagrams as a way to communicate pictorially what would happen in any given procedure.

I stuffed the newest drawing into my purse next to the small white pamphlet that Dr. Schoeller handed to us the day before, when he broke the news of Laura having Congenital Heart Disease, right before she was admitted into the hospital.  The first thing he did was to show us a picture of what a normal healthy heart looked like, then he flipped through a few pages until he got to the single ventricle anomaly that was closest to Laura’s heart defect, as he put it. He passed over the page of tetralogy of fallot, saying she didn’t have that one, then paused at the one page illustrating transposition of the great arteries, noting that she had this one as well, but in conjunction with—then he found the page that came the closest to what Laura had, hypoplastic left heart syndrome. He crossed out left heart and wrote down right heart, then drew in the transposition part, stating it was rare that any two heart defects were ever exactly the same, and telling us that Laura’s heart defect fell into the category of what cardiologists like to call complicated (or complex) single ventricle congenital heart disease, since there were so many components to Laura’s abnormal and very sick heart.

It was day two at the hospital. Paul and I were still so glazed over with shock and sorrow that it was hard for us to grasp much of the details, on this day or the first day.  It was definitely sinking in that this was a very serious heart defect and that Laura was in trouble.  For the next few hours we would meet more doctors who would restate, repeat, and break down this same information into smaller portions with more drawings, as they each tried to explain what was going on with Laura to reinforce the reasons for the medical treatments. 

It was still early in the morning when Dr. Long joined Dr. Roman in Laura’s hospital room. Our baby lay in a deep sleep, and had not known that we were in the room.  I voiced concern for my immobile and oblivious baby; who was not even stirring from all the voices in the room. Dr. Long made it clear that this was of no concern to him, that she was exhausted from bearing the stress of congestive heart failure, and needed the rest. We began to develop faith in Dr. Long in a short amount of time, and would feel a sense of safety when he was in the room.  A bond of trust was forming. It was as if we were being imprinted under his medical authority and guidance. We began to see him as our savior.

“Today we will continue measuring liquid in-take and out-take, and continue with intravenous lasix, the diuretic that is working to rid your baby of fluid retention, to take the pressure off of her lungs and heart.  Laura will be losing weight initially. It is not like real weight gain, just fluid,”  he informed us.  Dr. Lang took a seat directly in front of Paul and I, while Dr. Roman went to the door to let in a woman who appeared to be another doctor, since she was also wearing a white lab coat and had a stethoscope hanging from around her neck. 

“Here you are,” he said to her as she entered the room. Then he turned to us and said, “This is Dr. Mary V. who is also a cardiac fellow, like Dr. Roman. She will also be working with Laura.” 

Mary smiled at us and then looked into the crib to see the still sleeping Laura, the new patient.  Dr. Roman went out into the hallway to get more chairs so they could all be sitting  down, surrounding us with a committee of doctors. I began to wonder who Laura’s doctor was, and who would be doing the cardiac catheterization procedure. I noticed that Dr. Roman had a cast on one of his hands and  I wondered how he was going to do any procedures like that.  There were so many doctors: Dr. Schoeller, Dr. Long, Dr. Roman, Dr. Mary V, and a trail of too many to remember, interns or residents that seemed to always be floating in and out of Laura’s hospital room, to take a peek at the new patient, and to take a listen to our baby’s heart. 

Finally,  I asked, “Who is Laura’s doctor, actually?”

Dr. Long looked at me with amusement. Then his eyes became more serious as he said, “I am Laura’s main physician, since I am the attending cardiologist. Mary and Jack are cardiac fellows, who are each working toward becoming cardiac specialists. They are working with me during two year fellowships. Dr. Schoeller is at the end of his fellowship, and he will be going off tour in a few weeks, and back to his home in Russia.”

I was sad to hear this since I felt a genuine connection to Dr. Shoeller, maybe since he was so kind, and the one to give us the initial bad news in such a gentle and compassionate way.  Dr. Long went on to say that this was the primary cardiac medicine team, and that the cardiac surgical team would be introduced to us later on. He explained why so many other doctors floated in and out of the room; that Boston Children’s Hospital was a teaching hospital, and that these interns and residents were also part of the team.

Dr. Lang moved on to explain the plan for the day, and exactly what they hoped to accomplish in the cardiac catheterization procedure. He explained that this was the best way to look closely at Laura’s heart and that it was done with a small camera on the end of a catheter that would be threaded into her heart via an artery or was a vein through the neck or groin. He sketched a new drawing, this time of the catheterization procedure. He said that it was used for both diagnosis and treatment.

“If we are able to do this safely in the Cath lab, we may try to insert a stent or do a ballooning procedure, or we may wait to have the surgeon do this during her heart surgery which will be in the next few days.”  He spoke with a level of calm and confidence that I had rarely heard before.  Then he paused, sat back and folded his arms over his chest as he looked up and smiled at us both, and said, “I know this is a lot to take in. I am sure you have a lot of questions.”

Both of us sat there in silence. We were still trying to catch up with what was said and to remember each sentence we heard. My own mind was left back at the drawing, so I pointed to it and asked for more clarification. I couldn’t help staring at Dr. Romans’s cast and was still very confused by all the doctors, and which role each of them had.

“Who is doing this catheterization procedure exactly?”  I asked as I looked over at Dr. Roman’s hand cast.

“I will be doing the catherization today,” Dr. Long responded.

“Oh, Thank God,” I said, “I thought it was Dr. Roman who was doing the catheterization. I’m glad to hear he isn't doing the procedure since he’s wearing a cast.” 

This seemed to bring us each a moment of levity, a bit of comic relief.  Dr. Mary began to chuckle first and we all joined in. Each doctor added nods and words, indicating that, NO, Dr. Roman with his injured hand would not be doing any procedures, and not to worry.  Dr. Long went on to reassure us,“Even though we are all Laura’s doctors, we have different roles. The most important thing to know is that we are all on Laura’s cardiac team and we will all do our best to take care of your daughter and make her more comfortable and get her into much better shape.”  I wanted to believe that they would. 

We were left alone to be with Laura. There wasn’t a lot of time left before they would come to take her down to what they called, the Cath Lab.  Paul and I took turns holding our baby daughter with all her tubes, wires, IV lines hanging, and monitors beeping. We were sobbing quietly over her and waiting to hand her over to the unknown, for this frightening procedure.  We were scared for our baby and feeling the weight of responsibility, something we had never felt before. We had given permission for this procedure. Our signatures were affixed to the consent form, constituting a partnership with this team of doctors, and relinquishing control over our tiny baby’s well being. 

The nurses came to take Laura down to the Cath Lab. They took hold of the crib; one unlocked the wheels and they both rolled Laura through the doorway. One nurse stopped, and turned to tell us that we could wait in this room during the procedure, or go down to the cafeteria. She said we would need to stop at the desk to get a beeper if we left the division, in case the doctor needed to emergently get in touch with us.  The nurse's words triggered those awful, dreadful feelings of fear.  Fear had taken a home in my heart that day and set up permanent residence. Paul and I watched as they wheeled Laura away from us, into the unknown, into the blue. 

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