The Long Dark Tunnel

Posted On Wednesday, April 06, 2011  by Kristina

The story, “The Silence is Deafening” could have been my story. While I was reading it, it occurred to me that I too was on my way to being discharged from the hospital at one point and the fact that my blood pressure (BP) spiked, probably saved my life. It not only spiked but remained high and erratic. Lucky me! Thankfully, my story had a different ending than Joan’s.  My heart goes out to her husband and family. The loss of this woman is a tragedy.

My experience taught me many things, not the least of which was the duality of life. Until this happened, I had a very naive understanding of life. As this story doesn’t easily unfold, it’s difficult to write. There is no linear, logical progression to this story. It is a tangled, messy web of intersecting events, information and people going in every direction all at once. It has taken me five years just to process it and come to the mental clarity to make this attempt.

In the beginning of this story, my daughter and I are one. Her life needed my womb for survival. I needed her survival to be worthy of life. My physical life depended on becoming two, my soul’s life depended on giving all and nurturing this one, new life. But somewhere in this story, as is inevitable in all pregnancies, one becomes two. If this is all too melodramatic for you, I agree. But there it is. This is very hard to talk about, but I feel I must.

In addition, I must disagree with Todd on one point. I don’t believe that doctors refuse to admit the existence of this disease. It may appear so, because we are dependant on doctors to guide us through the effects of this stealthy and vicious disease. Rather, I believe that non-medical entities have too much control over the doctors who are caring for patients attacked by the disease. The mainstream, the usual, the odds, determine the path of least resistance to the highest profits in every business. The art of medicine, intended to be crafted to the individual, is drowned by an overwhelming flow of mass production crafted for the majority of people for the business of medicine. Unfortunately for Joan, she received the “one size fits most” version of medicine and paid with her life. Fortunately for me, I received a tailor made version of medicine and escaped with my life. The medical community calls the former, “cookbook medicine” and they despise it. But they participate in it and perpetuate it because they are forced by economic reality. This is another tangled, messy web of intersecting events, information and people.

I want to take this opportunity to thank my doctor for her skill as well as her humility. She carried me as far as she was able, and then wisely turned my case over to others when she reached the limits of her knowledge and experience. Kudos to her! This is the ideal way to practice medicine. I owe everything to her and to my nurses. She was brave enough and strong enough to say, in front of her team, her patient, and her community of colleagues, “I don’t know” and to ask for help.

The Long, Dark Tunnel is a turning point in my life. I entered, was consumed, changed forever, and released from the tunnel over a span of 9 days.  The tunnel cleaves my memories and existence into ‘before’ and ‘after’.

At 30 weeks of pregnancy, 10 weeks before my due date, I had just had a baby shower. My husband and I had traveled to central Kentucky that weekend to his hometown for the event. I wasn’t feeling well, my vision in one eye was blurry and dim, and my feet were swollen to the point that I couldn’t wear regular shoes. Everyone that I talked to assured me that the swelling was normal. I was determined not to be a wimp and to function normally in my job and my life through the last trimester. I wanted to conserve my leave time for use once my daughter was born.

Monday morning came and I got up to get ready for work. I soon realized that my vision in both eyes was now limited. When I looked directly at my husband, all I could see was his silhouette. I could see things in my peripheral vision, but not directly in front of me. My husband wanted me to call my doctor. I planned to, but I have to leave for work at 6:45 am, the doctor’s office begins to accept calls at 8:30 am. As I got ready, I remembered that it was my week to drive the carpool. So I called my friends, and asked if someone else could drive since I was not able to see. My friends were alarmed.  They wanted me to see the doctor and I promised I would call my doctor as soon as the office opened. I should mention as well, that I am hearing impaired. Not being able to see people when they talked severely limited my ability to understand what was said to me and to communicate effectively.

My difficulty in communicating became very apparent once I got to the office. I was realizing just how much I relied on reading lips. My stress was mounting because I needed to work. My job was to collect medical malpractice insurance claims data for my state, compile it and report to the state legislative body by September 1. My due date was September 28. It was July 18 and my work and plans for the next month simply did not allow for this distraction. I called the doctor as soon as her office opened and asked if I should just call an eye doctor. They asked me to come in to the office and then they would refer me to the eye doctor if necessary. Ugh, that wasn’t as efficient as I had hoped. My supervisor offered to drive me to the doctor since I had not been able to drive to work. I had a bad feeling that something was wrong and I called my husband and asked him to meet me at the doctor’s office. I was feeling foolish and wimpy by the time my husband got there and we went to the examination room. It’s normal for pregnant women to feel weird, tired and uncomfortable, right? I was afraid they would put me on bed rest. I did not have time for that. The nurse took my BP, and even though I couldn’t see her, I could tell she was a little unnerved. She asked for a urine sample and then told me to go to a small room with a recliner in it. She had me lay back in it on my left side. I remember thinking, “this is nice, but I don’t really have time for this.” She told me to lay there and try to relax, and she would be back in ten minutes. I tried to, but I was thinking that I really wanted them to figure out what was wrong with my eyes so I could get back to work. I could feel every minute of my leave time ticking away as I sat there.

After my little rest, my BP was taken again and it had not improved, so I was shown into the examination room to wait for the doctor. The nurse again had me lay on my left side. My doctor came in and told us, that I had preeclampsia with high levels of protein in my urine and very high BP. She was admitting me to the hospital and I would have my baby within the next 48 hours. It was shocking to hear this. It was too early to deliver the baby. I still had two and a half months! Ten weeks! We didn’t have a nursery set up at home. My very organized, concerned and methodical husband offered helpfully that we had not yet had the birthing class and that we were in no way prepared. The doctor smiled and good naturedly responded that was quite alright, anything they were going to teach us was not going to apply anyway. There went all my carefully laid plans. I was trying to figure out who to call at work, and how to explain how to do my job. I was still figuring out procedure myself, I sure didn’t have a manual I could just hand over. I was letting everyone down. I now offered bed rest as a preferred alternative to delivering the baby too early. The answer was a very definite, “no”. Delivery of the baby was the only cure for this disease. And so began the worst and best week of our lives.

From this point on, most of this story is a blur to me. I’ve pieced it together from my random memories, friends’ accounts, my husband’s recollection, and reading my medical records.

I was put in a wheel chair and taken across the skywalk from the physician’s office tower, to the hospital. I was admitted, taken to triage, had an IV started, and put on the hospital gown. Then I was taken to a labor and delivery room. My nurse gave the introduction of what all she was ordered to do to me. She then hooked me up to every piece of machinery in the room. I had a BP cuff, fetal monitor, contraction monitor, heart and respiration monitor, catheter, and IV fluids and magnesium sulfate. I was given an injection of steroids to speed my daughter’s development. The injection started the clock ticking on the 48 hour period that my doctor wanted to give the steroids to take effect. As it turns out, 48 hours until delivery was a goal, but my condition dictated that time be abbreviated to 24 hours. After this flurry of activity, my BP was becoming more alarming. The nurse would occasionally check my reflexes (you know the little rubber hammer to the knee routine?) Always, I had exaggerated reflexes. This troubled the nurse. For some reason, I found this funny. In my mind, the hammer to the knee was a silly thing that doctors did as rote during a routine physical and no one ever knows why, and no one ever cares enough to ask because it’s fun to watch. I had no idea why it was of such importance especially since my reflexes seemed to be super sharp. That was good, right? I wanted to be given credit for passing at least ONE test thus far.  But I was actually failing. More is not always better.

My husband and I understood very little about what was really going on at the time. Even though the specific test results were told to us, we didn’t know what they meant. I know now, that I was not given all of the information in order to prevent adding stress. The monitors were turned away from me, the shades drawn, temperature lowered, TV turned off, and my husband was encouraged not to talk to me.

For all intents and purposes, the magnesium sulfate I was receiving put my body in a sort of suspended animation, and the rest of the measures were to deprive me of all stimulation in order to keep my BP from rising and causing seizures, stroke, and/or a coma. I tried to sleep to escape the severe head ache, and unbelievably bad heartburn, but I couldn’t. My head felt like the top was going to blow off any minute. I retreated into nothingness. I felt as though I was in a long, dark tunnel with no exit. I prayed. I pleaded with God that if someone had to die, let it be me. I wanted the chance to raise my daughter, however I knew that I could not live with my guilt or face my husband and my in-laws if my daughter did not live because of me. I knew that my life as I knew it was over and if my daughter did not live, and at the same time I did live, that it would be Hell on earth. To use a gambling phrase, I went “all in” in my conversations with God.

As my condition worsened, I lost track of time. The pain in my head could not worsen. If I had known that a coma was the next feared step of my disease, I would have prayed for it just to have the relief of unconsciousness. I didn’t know if it was day or night, and I began to wonder if I wasn’t already dead. I did not know at this point that everyone had been asked not to talk to me. I thought that either I was already dead and they were just keeping me hooked up to machines until they could deliver my baby or that they knew that death was imminent and were waiting for me to die. Despite the pain in my head and the thoughts of death, I had a very odd sense of calm. I knew that I had no control over the situation, that knowledge was a small comfort. At some point, I was somehow able to ignore the pain in my head. I hoped that if I was dead that they would discover my body and move it before it began to smell and rot.

Then it was time to deliver the baby. Twenty-four hours had passed since I was admitted and received the first steroid shot, but it felt like a week to me. People were talking to me. Lights were on in the room. I was relieved that I had made it as long as I did in the tunnel, but I was worried that it was too soon to deliver the baby. I asked if they couldn’t just keep me on the magnesium sulfate and let more time pass for my daughter’s sake. I would willingly go back to the tunnel. My doctor said that no, we had to deliver the baby now.  Delivery was the cure.
 
I’m told that my mother and brothers arrived and were allowed to visit with me. A couple of my friends were allowed in as well, but I don’t remember. My father had not been able to get a flight from were he was teaching that week. I know he wanted to be there, and was very upset that it couldn’t be done. But as I told other friends later who weren’t able to come to the hospital, it’s okay. I wasn’t allowed visitors and I honestly don’t remember. I remember that clergy were always allowed. This was a new experience for me. Volunteer pastors from my church, most of whom I had never met, came to visit and pray for me. I’ve never been one to crave attention, but I really appreciated this. I was doing some serious praying and I welcomed the help. They were so kind and always included me and my health in their prayers. I was always surprised and extremely grateful. I know that it helped.

My husband was worried about the epidural. I had my back to the nurse administering it, obviously. His eyes got as big as saucers and he said, “Don’t move, okay?” I sort of laughed, and said, “I know.”  I had not seen the needle, and I was beyond worrying. I could not imagine the pain in my head getting worse, I was at the “10” on the stupid pain scale, so bring it on. I had decided that anything was worth it if it increased my daughter’s chances, I didn’t want to live unless she did too.

The epidural was given without incident but it didn’t work properly. My doctor described it as “spotty”. I didn’t have spots, but only portions of my body were numb. I got myself on the operating table to the astonishment of the staff assembled.  Speaking of the operating room, it was not at all like those you see on TV. I was not happy to see that the operating table resembled a cross, to which the team planned to strap my arms. Indeed, I was laid prostrate before God and the team of medical professionals. However willingly I had entered the room, however cavalier my attitude only a few minutes ago, now I wanted to go back to the nothingness of the tunnel. My arms were strapped to the cross. I was draped, and my doctor began to poke around on my belly. To the frustration of the anesthesiologist, I could feel the doctor’s pin pricks on my belly. I had intended to endure anything but I really didn’t want to go through this operation without benefit of the epidural. We all have our limits and I had found mine. Prostrate or not, cross or not, ready for death or not, I was still conscious. Death and suffering are two different things. I did NOT want to be awake to feel them cutting me open. It was the one time throughout this entire process that I spoke up for myself. I have no idea why I didn’t just faint.

Meanwhile, my husband was waiting patiently in my room all dressed and ready to attend the birth of his child. This was going to be the good part! And this was the cure for the problem at hand.  Five, ten, fifteen minutes passed and he worried that they had forgotten to come get him. While the anesthesiologist worked on me, my doctor left the sterile operating room to go tell my husband what was happening. After much ado, 40 minutes late, we were ready to begin the operation with my husband in the room. Even though I could only see his eyes, I could tell he was worried. My daughter was delivered, while I was feeling much more of what was going on than I wanted. It was not pain like my head ache, but I could feel it. I struggled to lie still and at one point, I kicked the instrument tray. I begged them to hurry up and get finished. Finally, the tugging and pulling on my insides ceased, and they held up my daughter to let me see her before they took her away to the NICU. Her face was so tiny and cute, all bundled up like a burrito!

My husband stayed with me in the operating room which he had planned to do, even though I really didn’t expect him to once he saw our baby. But he did, and it meant a lot to me that he stayed with me. Then I was given general anesthesia, and mercifully the pain in my head and the knowledge of what was happening to my body behind the drape that I had been trying to ignore, ended. 

When I awoke, I was very disappointed to find that I was still receiving the magnesium sulfate. I wanted something to drink and I wanted to be able to take something for the heart burn! I didn’t feel that much different except for the worst of the head ache had subsided. The doctor had added morphine to my IV as well as BP medication since the surgery to deliver my daughter. Pain is difficult to quantify even when you are experiencing it and morphine plays tricks on your memory. Whether the narcotics blocked the memory of the past day or it was simply my mind in denial, I wasn’t thinking about pain. My vision was still impaired. I had grown accustomed to the constant movement in my womb and now it was gone. I felt a little lonesome. But the morphine made me more tolerant, and I was relieved at the reports that my daughter was doing well. The experience of the surgery was a distant memory even though it happened only about an hour or so before. The doctor told me that I had to be on the magnesium sulfate and morphine for 12 hours. Most people remember the narcotics fondly. And while I’m certain that they were preventing a bad experience, they weren’t exactly pleasant for me. The darkness of the tunnel was “swirly”. Even when I closed my eyes, the swirls of darkness were there. I didn’t know if I was awake or asleep. It seemed as though time was standing still. Again I wondered if I was alive or dead with an odd sense of calm.

As the fog lifted and light crept back into the room, I assumed that I was on the road to recovery. In fact, I was being coaxed through the steps that lead to discharge from the hospital. After a time, I was taken off of the magnesium sulfate, and morphine.  I was disconnected from all of the machinery and given a liquid dinner of beef broth, tea, and Jell-O. After my recent experience, this liquid dinner from the cafeteria was ambrosia! I was taken to the bathroom for the first time in 3 days. I was moved to a room on the post partum ward. (For those that don’t know, the post partum ward is more like a hotel room than a hospital room. I was there for observation for the minimum amount of time with minimum staff before being discharged.) I was very tired from the move and was ready to try and savor what I figured was my last good night of sleep for a year or so. But the evening rounds of technicians still had to come by and take all my vital signs for the record.
 
I distinctly remember that the technician that hooked me up to the automatic machine and took my BP thought her machine was broken. She had never seen a reading that high, so she thought that it must be an error. The RN kept sending her back into my room with different BP machines, all with the same result. Then the RN told the technician that she must be doing something wrong. The technician was very frustrated. She very deliberately went through every step of putting the cuff on my arm, stepping away from me and pushing the button to start the machine. It went through the now very familiar cycle of inflating and deflating. It was still a very high reading. So, finally the RN took my BP the old fashioned way-with a manual cuff and stethoscope. Yep, the same unusual reading--she finally had to believe that my BP really was that high. Since it was 11 pm at that point, the RN really did not want to call the doctor, but she did anyway. My OB/GYN, gave orders that I be seen by the Maternal Fetal Medicine Group during rounds the next morning (in 5 or 6 hours). The next morning when I saw the doctor, the day I was to be discharged, my BP was high but not scary; the Maternal Fetal Medicine doctor ordered that blood be drawn for other tests. The phlebotomist had a hard time finding me because it was unusual for her to be sent to the post partum ward. The doctor also ordered that my BP be taken again in a few hours. But I was still on my way to being discharged. My husband and I trusted the doctors, and what they were saying was consistent with what we had been told about the progression of the disease.

The 12 hour-shift of hospital personnel changed at 7 am. The newly assigned RN took my BP as ordered, not the technician. It so happened that friends were visiting me at the time. The nurse seemed alarmed at the reading. She asked that my friends wrap up their visit while she reported the results to the doctor. The nurse came back a few minutes later to take another reading. It was still high, apparently it was scary. The nurse that took it, had the same look on her face that the nurse in my doctor’s office had when this all started. They looked at me as though I was a bomb about to go off. I remember my husband had begun to protest because things were not going as planned, but he quickly backed down when I suggested that he should look at the nurses expression, and that perhaps we should listen to the medical professionals. As soon as I sat down in the wheel chair, the RN was off, taking me back to the labor and delivery ward. She left me in the labor and delivery ward with an RN and gave her no choice but to keep me. Everyone was confused, but there I was. I couldn’t go anywhere even if I had a mind to, as I was still mostly blind, could barely walk to the bathroom and back, had no idea where the exit was, or where my shoes and purse were for that matter. In hindsight, if not for that spike in BP and that RN forcing me back in to a different ward, I would have been sent home just like Joan, the woman in “The Silence is Deafening”. I am incredibly fortunate.

After being re-deposited in the labor and delivery ward while I was not in labor, and had already gone through delivery, the staff didn’t know what to do with me, understandably. You see, in any hospital, there is a definite planned progression of events dictated by nature, hospital administrators, and health insurance companies that are and were expected to happen and here I was going against the traffic. After much scurrying around, calling my doctor, consulting my chart for the events of last night, they put me in a room, started a new IV, hooked me up to every monitor that I had prior to delivery with the exception of the fetal monitor, gave me BP medication, deprived me of as much stimuli as possible, and watched me. The hope was that as the hours past after delivering the baby, my body would eventually “catch up to the program of expected events” and return to normal.

Meanwhile, I was told that my daughter was doing as well as possible down the hall in the NICU. My husband was trying to keep track of both of our needs. He did an outstanding job, by the way. As was apparent later, he remembered the result of every test, and every entry into both my and our daughter’s charts.  He never missed an opportunity to quiz the nurses about what things meant and what was going on. He made sure that every order from the doctor was carried out and that all information was distributed to the nervous group of friends and family that had returned to the waiting room. And thankfully, they made sure that his basic needs were met as well. They brought food, clothes, the phone charger, and took care of our home and pets. Somehow, my mother, father, and siblings were picked up from the airport and brought to the hospital. I’m sure that we never thanked everyone enough, but I am grateful to everyone who was there to support my husband as he dealt with the flood of information and stress. Normally, he and I are partners in everything. But at this point, I now know, that he had been told that both our daughter, and his wife were in very serious condition and he should prepare himself for the possibility that he may lose us both. I wasn’t any help. I was in a fog. I was being shielded from information to avoid any stimulus that would raise my BP.  I don’t know if it was the drugs being pumped into me or my mind retreating into the nothingness of the tunnel once again, but I was extremely worried about my daughter even though I was told she was doing well, and I just couldn’t get my mind around what was happening to me. I prayed again for God to take me, not my daughter.

When anyone is under a lot of stress, they don’t always react as expected or appropriately. I was withdrawn and silent. I think that my nurses and the nurses for my daughter were very worried about my reaction. In addition, I learned later that the waiting room of our family and friends were under a lot of stress and reacting to the news of the worsening conditions of me and my daughter, and to each other. While everyone can and is happy at the birth of a child, this particular birth has caveats. It wasn’t typical; the joy of life was being closely pursued by death and all that comes with it. For the group in the waiting room, the emotions were as thick, heavy and conflicting as mine were. My husband and the hospital staff had to deal with caring for me and my daughter, as well as the small mob of very worried, emotional people that were showing signs of fracturing in the waiting room.  We as a society are so fortunate to have the expectation that for every problem there is a solution. When it became apparent that this birth was not going as planned, the fear and stress mounted.

My husband asked about pumping breast milk because the NICU was asking about it. We had always planned for me to breast feed, but with all that had happened and given my current condition, my nurses were skeptical of the value of pumping and the added strain it would put on my system. Oddly, I really wanted to do it. If it was something that would be helpful to my daughter’s health, I wanted to do it. So the equipment was brought in and a lactation nurse gave us our instructions. Because of the IV and all the monitors that I was attached to, my impaired sight, and my weakened state, I couldn’t operate the pump. My husband had to do everything. But he did with great efficiency (he had worked on a dairy farm before and as he pointed out, there wasn’t much difference).

Now, before you get upset at my husband for being insensitive, this was a time were we giggled like adolescents-a welcome variation in mood. His observation was the truth. And honestly, I had the thought many times throughout pregnancy that it brought to the forefront of our conscious thought, bodily functions that which most people go to great effort to conceal or at least forget happen on a daily basis. If I had thought pregnancy a vulgar experience, being hooked up to yet another machine that would pump milk from my breasts was over the top! And what girl likes being compared to a cow? Not one of them! I don’t care how much you may welcome the joys of motherhood, cow comparisons are not fun, but sometimes you just have to laugh and get over yourself.

I was astonished, but my milk came in and the pumping of breast milk went exactly as the lactation nurse said it would. It was good for both my husband and I to feel like we were doing something right! My friends later laughed that my husband kept referring to the process as “harvesting the milk” (as I said, he had worked on a dairy farm before). In any case, something was going well for me and that was a bright spot in my experience.

However, my health did not return to normal as was hoped.

Later the same day, I was moved to the ante partum (before delivery) ward. The labor room that I was in was needed for a person who was in labor. Again, I was going against traffic. It was apparent that no one really knew what to do with me or more importantly why my BP was not coming down to a normal level. I did not like being the source of such frustration. But once again, I knew that I had no control over the situation and again, I had an odd sense of calm. I was hooked up to all of the machinery again with the exception of the catheter. I was on a 2 hour pumping schedule.

During the move, since I had to be removed from the machines anyway, I was taken to the NICU to see my daughter. I was afraid and excited. I put on my robe, and rode in a wheel chair to the NICU. I was surprised at the security measures in place. We had to be buzzed in, but it was apparent that everyone knew my husband and was expecting us. It was difficult for me to scrub my hands and arms as instructed because of the IV ports still attached to me. It was all new to me and I didn’t understand it, but I was totally willing to do whatever instructed. The NICU was small, hot and crowded. Little isolettes were parked in neat semi-circles according to needs. I strained to see into the isolettes, I wanted to see all of the babies. My husband explained that everyone is asked to go directly to their baby’s isolette and not wander for privacy reasons. Despite the brightly decorated name tags, and cheerful colors, and signs posted, each baby was in intensive care and some were not going to live. The thick mixture of strong emotions in the room was palpable. 

The nurses welcomed me in and explained everything. I was overwhelmed because this was the first time the gravity of my daughter’s situation was made known to me. I was taught how to put my hands on my daughter’s head and chest and to avoid stroking or light touches as her nerves were super sensitive and constant touch was much more tolerable to her than light brushes. She looked perfect to me. My husband had described her to me and shown me a picture or two, but pictures never really give you a true perspective. She was incredibly tiny, and looked different than most newborns because she was skinny. Her head was about the size of a baseball. My hand covered her entire torso. She stayed stretched out with her little limbs moving in jerky uncoordinated movements. Up until that point I had not asked about her much. I was afraid, and I had grown accustomed to the lack of interaction and information that my sensory deprivation, blindness, isolation and exhaustion had brought on. But now that I had a glimpse of her, I wanted to know more and my husband told me everything he had learned up until that point. I began to feel a little more like a partner again even though, clearly, he was pulling most of the weight.

We couldn’t stay long in the NICU, my nurses had said that I could not be away from the monitors for more than 30 minutes. Besides, it was hard on my daughter to have a lot of stimulation. I was hooked up in the ante partum room just as I had been in the labor and delivery room. I received my third IV in 5 days. Thankfully, because the surgery of the delivery was complete, they didn’t use the really big needle for the second and third IVs and instead of a 6 port apparatus, it was a much smaller 3 port apparatus. My hands and arms looked like a bruised pin cushion. My right arm wore the BP cuff that automatically inflated and took a reading every 15 minutes. It was a disposable cuff and the hard plastic edges were making scrapes on my arm. The nurses and phlebotamists apologized profusely, but I understood the necessity of it all. These discomforts were nothing compared to the emotional toll. I can’t say enough how much of an impression the nurses made on me. When I was my most wretched, and the doctors were making tracks out of the room, the nurses would run to my side to my aid and comfort. Nursing is not a job, it’s a calling.

I was no longer receiving magnesium sulfate or morphine. My vision was still very limited the peripheral. I slept a lot, that is, for the short periods of time when I wasn’t pumping breast milk.

I was tired. I had been laying in a bed for three and a half days but I was exhausted. I was tired of being sick. I was very frustrated with that stupid pain scale! After the head ache I had endured, it was hard to measure pain from my surgery, especially since I was usually awoken from a deep sleep to inquire what my pain was. Most of the time, I didn’t feel I needed the pain medication. However, when my BP readings continued to go up and down erratically, one of the doctors said that pain can increase my BP which may account for the spikes, so that I should take the pain medication whenever it was offered. I spoke up and suggested that the doctor write the orders in a way that it is not offered as an option but as mandatory on a regular basis the appearance of reluctance to dispense it! Quit asking me to rate my pain! Compared to the last few days, my incision from the Caesarian was not painful. In hindsight, the doctors were searching for any obscure reason why my BP was not coming down. They were as frustrated as I was. No one knew what to do. The medication I had been given was increased to its highest suggested dose over this period of time since the delivery and it was not controlling my BP. My doctor declared me an enigma. She was right! So after another day of the same, my doctor requested that two “hospitalists” be asked for an opinion. These doctors were accustomed to dealing with run away BP in elderly patients. One of the doctors while explaining what he was suggesting, actually said comparatively, I wasn’t all that sick and that my BP was not the highest he had ever seen, but that in a person my age, it was unusual. The competitive side of me wanted to tell him that my test results were the highest my doctor had seen to date, and I had been in the hospital for 6 days so somebody must believe me to be sick! But I refrained, because quite frankly, his diagnosis was preferable. I didn’t want to be sick anymore. He suggested a cocktail of three separate very powerful drugs, in addition to the one I had been taking. The doctors apologized for giving me so many drugs, but I again found myself at the cavalier, it-can’t-get-any-worse-than-this, “bring it on” stage.

Some time when I was first put into the ante partum ward room, my father arrived. He was very upset that he was so late. But he came bearing a gift. He had brought me a teddy bear. He said that I was “his baby” and he really wanted me to know that. It was a very powerful, tangible gift. I knew my family and friends loved me and wanted me to get better. But after a week of offering my life up as sacrifice to God for my daughter’s, the teddy bear was a much needed and timely confirmation of my worth. I took the bear and kept him with me in my bed. I still have him.

I was given these “heavy duty” drugs, but because they were typically given to geriatric patients, they either were not recommended for use in women who are breast feeding, or they had not been tested at all. So upon the advice of my OB/GYN we had to dump two days worth of precious breast milk. Everyone who has ever nursed knows how much we hated to do this. Fortunately, I was already pumping far more than my daughter could consume, so the pain of watching the milk being dumped out was softened a little.

The other hospitalist that consulted on my case examined me and was especially interested in my reflexes. She felt my legs and closely examined my ankles. She said that she believed that I had too much fluid built up in my tissues. She prescribed a high dose of diuretic to help my body flush them out.

She was right! 50mg of HCTZ every 6 hours was the key to controlling my BP. While everyone had thought I looked normal for a pregnant and post partum woman at 30 weeks, I proceeded to lose 24 pounds of fluid in three days. Let me say that again, I lost 24 pounds in three days. I knew I was swollen! So for three days, I peed, and peed, and sweated and sweated. My long hair, hospital gown, sheets, everything was wet from sweat. I was the amazing, shrinking woman. The change was dramatic. The heavy duty drugs were able to work now that my heart was under less stress from the fluid retention. My reflexes calmed as I shrunk. I was moved from the ante partum ward to the post partum ward without passing through the labor and delivery ward. Again, I was going against traffic. But this time, there was much less confusion. My drugs were able to be adjusted to those that were safe for use while breastfeeding. The hospitalists came by to check on me and were very pleased with their work, as was I. My OB/GYN was very happy and relieved. The doctors seemed worried and hated to send me home with a bunch of prescriptions considering the work and years that I had ahead of me. One commented that if he looked in my pill box, he would swear that I was a 70 year old man, not a 35 year old woman, post partum. I swore to him that I would take the pills dutifully and without complaint if that was what was warranted. 

The counselor from the NICU came to visit me. She was very worried about me, post partum depression and what I had ahead of me. Her relief was apparent through my improving but still blurry vision when I assured her that I already had a counselor and would most definitely be contacting her. And I also assured her that at this point, I had no objection to an anti-depressant and would take whatever drug was warranted for my condition. (A side effect of hypertension and any heart problem is depression. And post partum is always a concern for new mothers.)

After a brief rest at home, as much sleep as I could get while pumping every two hours, I went back to work. My daughter was still in the NICU. While I could have begun my maternity leave, and used my time to stay with my daughter in the NICU, I decided that it was better to conserve my leave time for when she could come home. The nurses assured me that there was really nothing that I could do but to continue to deliver the breast milk and make short visits when I could. So I went back to work for 6 hours each day. I got up at 5:30 am, and my mother had breakfast ready and my lunch packed. I pumped at 6 am, left the house by 6:30 am. I arrived at the office at 7 am, worked 6 hours straight, while taking two breaks to pump. I left work at 2 pm, and went straight to the hospital with my tiny cooler of breast milk. I visited my daughter for 30 minutes, used their lactation room to pump again then headed home. My mother had dinner ready for me. I ate, then changed out of my work clothes and went straight to bed for an hour. My husband came home ate dinner with my parents, then woke me up. I pumped and we headed to the NICU. Each night, after the night shift nurses arrived, families came in and took care of their babies, usually from 7:30 pm to 8:30 or 9:00 pm. After scrubbing up like a surgeon and donning a hospital gown over our clothes, parents got to hold their babies for a total of 20 minutes, the babies were fed, & weighed, and every fraction of an ounce gained was cause for celebration. Then the babies were given their bath and sensors changed. Then when they were all taken care of, they were put in their isolettes to go to sleep. The whole process took a little over an hour. Then we drove home, I pumped again, collapsed into bed for a couple of hours, got up pumped, slept a couple of hours, pumped, and it was time to start the whole thing over again.

We kept up this schedule for 5 more weeks. Finally, we got the good news. We were going home with our baby! I was so happy, but terrified at the same time. For the last 6 weeks, my daughter had teams of trained professionals and wonders of technology watching over her every minute of every day. I felt completely unqualified. But the thought of getting to hold her anytime I wanted for as long as I wanted was quite an incentive.

Once we got home, I spent the next 12 weeks holding my baby as much as possible. Many hours were spent in an antique oak rocking chair that had been used by young and old in my family for generations. It squeaked and creaked and it was incredibly comfortable. My daughter and I seemed most happy in the noisy chair together. We savored every minute. I am so thankful!

After a few weeks, I did not need the “heavy duty” drugs. Unfortunately, five years later I still have high BP and my body retains fluid. I take pills every day though a drastically reduced number of pills. In fact, I take the same pills that my dad takes. I don’t like taking them, and I don’t like the side effects, but it is better than the alternative. The good thing is that “Hypertension”, as is now my diagnosis, has many drugs available to control it. Once I was finished breast feeding my drug options were expanded and I have found a combination that works well for me. God answered my prayer. We both lived through it.

My daughter is now 5 years old and attending Kindergarten. I continue to see my counselor about this and anything else in life that bothers me. I wouldn’t give it up for anything!

Post Script—I hope my story will help the medical industry to understand the need for ‘a road less traveled’ to be constructed. There was so obviously no plan for the path that my disease took. I could have easily been a statistic. I hope that my living to tell it and putting it on paper is a contribution for all those women who didn’t live. I want to help make those statistics improve.