Pre-Eclampsia/HELLP

January and the beginning of February were much, much healthier than the previous months.  I still puked a handful of times a week (as opposed to a few handfuls of times a day), but I actually had enough energy to do dishes one day or vacuum or even take a day trip to visit my mom.  I never felt great, but I was used to it, and assumed that everything was fine, and that it was all somehow related to the dehydration.

            In retrospect, the first real clue that I got that my pregnancy was in danger was at my January doctor visit.  I had finally started to feel better, and as a result, I was able to eat a lot more than before.  When I went to the doctor and got on the scale, I had gained 18 pounds in 4 weeks.  It was such an amazing weight gain, that the nurse had me get off the scale and get back on again, just so she could be sure it hadn’t malfunctioned.  It hadn’t.  I was mortified.  All I could think about were those guiltless trips to Wendys for french fries that I had been indulging in a couple times a week, and all of the other once forbidden foods that I had been relishing.  Hey, I was pregnant!  I was supposed to be hungry!

            And, in retrospect, although I had been eating with gusto, there is simply no way that I ate 18 pounds worth of gusto.  My blood pressure was elevated at that appointment as well.  I have no idea if the doctor had any suspicions or not yet.  I didn’t.  I was just busy deciding if I was going to share my 18 pound shame with my husband or not (I did.  Bless his heart, he was proud of me for finally gaining weight).  Anyway, it was only two weeks later that I began my downward slide.  It began with a terrible back, neck and chest pain that wouldn’t go away.  Curtis was working late, and the pain got so bad that I started to cry and finally called him at work and told him he had to come home.  He gave me Tylenol and rubbed all the places it hurt.  Finally, I fell asleep.  But, when the Tylenol wore off, I woke up and began crying again from the pain.  Curtis again gave me Tylenol and rubbed.  From then on, I made sure that I took Tylenol every four hours so the pain wouldn’t come back.  The next morning, Curtis had me call the doctor and tell her what had happened.  I was convinced that the pain was probably from sleeping funny all these months with a growing belly, but I humored him anyway.  I went to lunch with some friends and then went in to the doctor’s office.  They took my blood pressure, checked my urine, and sent me to the hospital.  The nurses at my doctor’s office were absolutely convinced that I had pre-eclampsia.  But when I got to the hospital, my blood tested normal so the nurses sent me home with an order that if “anything weird” happened, I should call my doctor (Yes, ‘weird’ was the actual medical term they used).  Three days later, I decided that the constant, intense heartburn that I’d been experiencing for over 12 hours, was “weird,” so I called my doctor, who sent me back to the hospital.  I felt sheepish, because, really, it was just heartburn.  The nurses at the hospital took my blood and gave me some Maalox.  I’d been eating Tums like they were meals and they hadn’t touched the heartburn, but the liquid Maalox actually helped a little. I remarked to Curtis and the nurse that that was probably the most expensive dose of Maalox in the history of the world, because I absolutely expected to be sent home as soon as the blood test came back.

            But when the blood came back, the nurse stopped joking with me and immediately informed me that I was going to be staying at the hospital a while.  “Overnight?” I asked.  She got a funny look on her face and said “at least.”  This was Saturday, February 13.  My orders were to stay in bed except to use the bathroom, no television and no visitors besides Curtis.  I was told that it looked like I might have a very mild case of pre-eclampsia, and that this was just a precaution (I wasn’t supposed to have any stimulation because pre-eclampsia can cause seizures).  I was given IV fluids and got into bed.  The nurse had left my chart in my reach, so I started leafing through it, and in two places I saw “Diagnosis: Pre-eclampsia.”  But I felt fine, and the nurses acted like I definitely had a very mild case, and everything was just fine.  So I didn’t worry about anything.  Actually, I kept waiting for them to come into the room and tell me there had been a mistake.  I still had body pains and heartburn so I was given Tylenol and Maalox every few hours, but remember how sick I had been all through my pregnancy.  I didn’t see how I needed to be in the hospital to get Tylenol and Maalox. 

            Saturday and Sunday passed without event.  Curtis and I celebrated Valentine’s Day, and perhaps I should have thought it was odd that I didn’t want any of the candy he bought me.  On Sunday night, a resident was talking to me and I asked her if I needed to be worrying about anything.  She said “No, if we really thought your pregnancy was in danger, we’d put you in an ambulance and take you to Strong Hospital before anything went wrong”  (Strong Hospital is affiliated with the University of Rochester and has the best High Risk Obstetrics Department as well as the best Neonatal Intensive Care Unit in the area).  So I settled in for the night and expected that I’d probably go home the next day since I wasn’t feeling any worse.

            Well.  On Monday morning, my regular OB doctor (who I only saw this one time through the whole course of events) came into my room and said “I hear you’re misbehaving!”  I said I guessed so but that I didn’t feel that bad and she said “Well good.  We’re going to try to keep you from delivering for at least another 2 or 3 weeks.”  And then she left the room. 

            I guess that part of the “no stimulation” rules included not telling me what was going on.  I had no idea that pre-eclampsia meant anything other than high blood pressure, and I certainly didn’t know that it meant a premature birth.  Curtis had left me alone the night before so he could sleep at home and then go to work.  I was terrified and started to cry, but I didn’t have a phone in my room, so I couldn’t call him.  I just sat in the room and worried.  I turned on the TV and tried to watch “The View,” but my eyes were starting to bother me, so I turned it off after a few minutes.

            Then, at 1pm, a resident came into the room and told me that they had decided that I would do better at the high risk OB department at Strong.  She said an ambulance was going to take me over “sometime today.”  Then she left the room and reality set in.  They were taking me to Strong.  My pregnancy was officially in danger.

I hadn’t even reached for the first tissue when the ambulance driver came into my room and said “Dunn?”  ‘Sometime today’ apparently meant immediately.  A nurse came in and I asked her to call Curtis and tell him what was happening.  I kept crying through the whole process of getting strapped into the ambulance and then for the whole ride to Strong, and since I couldn’t move my arms (they were strapped down too),  I spent the whole ride sniffling and trying not to gag from all the snot running down the back of my throat.

And then it’s all a blur.  I don’t think there’s any way to recount it all chronologically, so bear with me.  When I got to Strong, I was no longer allowed to get out of bed for anything, and at first, I felt well enough to beg the nurse to please not make me use a bed pan.  I insisted that I felt perfectly capable of walking across the room to use the toilet.  But she said no, and by the next day, I was accustomed to the indignity of it all, but then they hooked me up to a catheter anyway. They had to measure my urine output, because they suspected (and were correct) that my kidneys were starting to shut down. 

They hooked me up to magnesium sulfate, to prevent seizures, and almost simultaneously, I started to lose my vision.  I assumed that it was from the magnesium, but Curtis told me later that it was the disease rapidly getting worse.  Everything was incredibly blurry, and when I tried to focus on anything, it hurt and exhausted me.  I’m pretty sure the magnesium is to blame for the confusion and disconnected-ness I felt, though.  That, and the room was kept dark (again – no stimulation), so I never knew if it was day or night.

At first, even though I felt lousy and couldn’t see, I was bored senseless.  Curtis brought in “What To Expect When You’re Expecting” and read the parts about child birth to me (I hadn’t dared go that far in the book yet).  I asked him to skip over the parts about Episiotomies and C-sections.  He also brought in a CD player and my favorite music, but even the quietest, calmest music felt like unbearable noise to me, so we gave up on that idea.  Instead, we talked to each other and talked to nurses and doctors.  I remember one doctor coming in to talk to us.  He was very young and had a heavy Indian accent.  I asked him what my baby’s chances for survival were.  He said:  “At 29 weeks?  Oh, very good!  90 percent.  Well.. at least 80 percent.  Well…definitely better than 75 percent.”  It was so morbidly funny.  Then I really stumped him.  I asked “If my baby was supposed to become a tall man, will he still be tall even if he was premature?”  His eyes widened and he very solemnly said, “I have no idea.”

I hung in there like a trooper for almost two full days.  Before I left Genessee Hospital, they had given me a steroid shot to help the baby’s lungs develop.  I needed two shots, total, and they had to be administered 24 hours apart.  Then, after I had the second shot, they wanted to keep the baby inside me for another 24 hours so the shot could have enough time to take effect.  Since I was getting so sick so quickly, they could only hope that the baby wouldn’t be born until Thursday, at the earliest, for the sake of his lungs.

Fortunately for me, enough time has passed now, that I can only remember how upset I was from the pain.  I can’t remember very well exactly what the pain felt like.  I know that, as my blood pressure got higher and higher, they made me lie on my left side, and for some reason, that made me feel like my rib cage was splintering apart.  They put an oxygen mask on me, because the baby wasn’t getting enough oxygen, and it made me light headed and my breathing shallow.  I felt like I was drowning.  I wasn’t supposed to feel the catheter, but it burned unbearably.  My entire body swelled so big that stretch marks started to show up on the tops of my thighs and arms.  My hands and feet looked inflated like Mickey Mouse’s.  I couldn’t focus on anything, and I couldn’t pay attention to what the doctors and nurses were saying.  I think, even more than the pain, I couldn’t stand the frustration of it all.  I needed to understand what these people were saying, regarding my health and my baby’s, but nothing made any sense.  The doctors tried to induce labor with the hope that I would deliver vaginally, but after almost two full days of pitocin and contractions, my cervix only dilated to 3 centimeters.  Finally, on Thursday, they decided to do the c-section.

Starting at Genessee Hospital, they had to draw blood every four hours, and that continued until the day before I was discharged from Strong.  I had enormous purple bruises from my hands to my upper arms.  By the time I delivered, no one wanted to have to draw my blood because they couldn’t find my veins through all the bruises and swelling.  The bruises were also a sign of HELLP Syndrome, which I also had.  There were bruises on my arms where no needles had pricked.  My mother compared HELLP Syndrome to Leukemia, because your blood doesn’t clot right.  Many of the bruises were in places that had never been touched by needles.

On Wednesday night, after one day of painless labor (surprisingly enough, that’s about the only part of my body that didn’t hurt.  The contractions just felt like the baby being really active), I finally lost control.  I had tried so hard to be a good patient, even though I was so sick and in so much pain (and so humiliated by all of the poking and prodding).  I could longer move on my own, and I lost hope for the baby.  I had been hooked up to fetal monitors since my arrival, and Curtis and I had spent that day watching his heart rate flop all over the place, going dangerously high and low.  He never seemed to level out, and as the day progressed, his heart rate got harder and harder to find.  I gave up on Milo, and I couldn’t see the point in putting off the delivery anymore.  My baby was going to die, and if they didn’t get him out of me, I was going to die too. 

My  poor mother came in to visit and she was trying to act like she wasn’t terrified and like it was normal to have a conversation in a dark room with machines glowing and nurses walking in and out.  She talked for a few minutes about nothing and then she mentioned that my grandfather had pneumonia.  God only knows why this was what set me off, but it was.  I’m not sure if it was me being selfish  ‘no, let’s focus on me now!’  or me just being overwhelmed  ‘I’m scared enough without worrying about Grampa too!” but I  started to freak out, crying and begging the nurses in the room to get the baby out, that I couldn’t stand it any more.  They paged the doctor, and my mother went away feeling like she was the reason I’d freaked out.

The nurses and Curtis had all been very sympathetic and worried and kind to me.  I really believed that the doctor would come in, witness my hysterics, see how dire everything had become, and would agree to end the whole thing with a c-section.  I was wrong.  The doctor was a very stern looking man who was completely unmoved by my tears and begging.  He looked over my chart, discussed me at length with other doctors out in the hall, and then came back in and said, “In my professional opinion, you are not yet sick enough to require a c-section.  If you disagree with me, you are more than welcome to get out of this bed and get a second opinion.”  I got so mad at him, that I think if I could have gotten out of bed, I probably would have strangled him!   I’m not proud of that moment, because I’m sure he could see my hatred for him written all over my face.  But he still wouldn’t bend.  He did compromise with me, though, and allow me to have an epidural put in then, even though no one expected me to deliver the baby that night.

After the epidural was put in, I finally felt relief.  I hadn’t slept (or eaten) in three days, and finally the pain left.  The doctors became a little more aggressive about getting my labor going, and broke my bag of waters and put some gel in there to try to open my cervix. 

Along with the constant blood draws, I was also getting my temperature and blood pressure taken every hour while I was there, but as long as they were giving me pitocin (to bring on labor), they had to monitor my blood pressure every fifteen minutes.  So, after sleeping for a few hours from the exhaustion, I stayed awake for the rest of the night, and made small talk every fifteen minutes with the nurse. 

            Early Thursday morning, the doctors came back into the room to see if my labor had progressed any.  It hadn’t, so they placed two internal fetal monitors inside me and directly on the baby.  Unlike the external monitors, this one was always correct.  If the monitor showed his heart rate dropping, then it really was dropping.  With the external monitor, if it dropped, it was possible that the baby was just moving and the monitor wasn’t picking him up.

They had to let the epidural wear off for a little while early on Thursday morning, because they had to test my blood platelet count (again, this has to do with HELLP Syndrome).  Platelets are what makes your blood clot.  I guess a normal person has a platelet count of 200,000. When they tested me on Wednesday night, it was 100,000.   They had to test me again, and this time the test had to be done in a certain way, and the doctor wasn’t happy with the way the nurses had done it, so then he drew it.  And, I don’t really understand why, but they kept poking me, and the doctor (a different, MUCH nicer one!) insisted that, for this test, they had to use the same vein each time.  Anyway, when it was all over, I counted 17 holes in just that one vein.

While they were doing all of the platelet business, I actually felt painful contractions.  I was moaning and wailing through them and the nurse gave me some silly crash course Lamaze-type lunacy (we were signed up for a five week childbirth preparation class that was to begin in three weeks), about focusing on something, and that would get me through the pain.  So, I picked my kitty since I had to pick something that made me happy.  So, my contractions went just like this:  kittykittykittykittykittykittykittyOOOWWWWWWWW!!!!!!!!!kittykittykittykitty.  So yeah, I totally missed the point of the breathing exercises, and I was really happy when they turned the epidural back on.  And, to add insult to injury, the nurse said that my contractions weren’t that bad yet.  I guess when it’s a major contraction, your belly is supposed to feel as hard as the end of your nose, and mine still felt pretty squishy.

Okay, so then the doctors came in and checked me out again, and determined that my labor wasn’t progressing enough (I dilated 3 cm and needed to dilate 10 cm to deliver a baby vaginally).  Finally they gave up on a vaginal birth and told me they were going to do the c-section that day.  The doctor who had drawn all the blood for the platelet test told me that he didn’t like how low my platelets had fallen, and that he was going to give me some donor platelets and that it would just be a little longer.  Well, no one told me until later, but my platelets fell to 19,000 (bad news, especially if you’re about to have major surgery), and they were flying donor platelets in from Boston, because there wasn’t a match anywhere closer.

By that point, around lunch-time,  I was really out of it   I remember Curtis sitting next to me, watching the baby’s heart rate dipping lower and lower on the monitor.  I remember he started crying.  It occurred to me that I was probably going to die, and I felt oddly okay with that.  I remember a nurse saying that every time I contracted, the baby was rolling onto his umbilical cord, and so she got on one side of me and another nurse got on the other side, and they rolled me back and forth to get him off the cord.  I was incapable of helping them.

Finally, they put me on a rolling bed and took me to the operating room.  They put  a little curtain over my chest so I couldn’t see what they were doing, and Curtis sat next to me, holding my hand.  He knew how scared I was, so he sang a Nanci Griffith song to me while the operation was happening.  I didn’t believe that they could cut me open and take the baby out without me feeling it, but they did.  I felt weird pushes that made me feel a little queasy, but there was no pain.  There were a whole bunch of really nice people in masks in there with us.  It seemed to me that there were some people there to do the operation, and some people there to just say nice things to me.  Those people were the NICU staff, waiting for their turn to work, but during those first minutes, I had a whole cheering section telling me I was doing great and that everything looked just fine.

They took the baby out, but I only knew it because I heard reassuring voices saying “Hi Milo!,” and another voice say “Time of birth, 2:03.”  I also heard the teeniest little cry.  I never got to see what he looked like all goopy and I never saw what our umbilical cord looked like.  That made me sad.  But I was already crying anyway, because he had been born alive, and I was sure that it was going to hurt even more when he died later on.

They let Curtis follow the baby into another room and watch as the NICU people cleaned him up and ran the first tests.  And I stayed behind and got stitched up.  When I had pictured having a c-section, it never occurred to me that something happened after they took the baby out.  It seemed like they took forever to sew me back up.

While I was getting repaired, Curtis came back, and then a few minutes later, the NICU people wheeled Milo out in an isolette.  A nurse held him to my face and told me to kiss him.  I was crying so hard when I kissed him.  I cried because I believed he would die and I wanted look at him, but I couldn’t focus on his face.  Even if I could have seen him, they had to rush him to the NICU.  They only held him in front of me for a few seconds.