My HELLP Story. Part 2.

We sat in the lobby at St. Thomas Midtown, Dr. H’s orders in hand.  The sobbing had commenced, and Terra was trying desperately to keep me calm.  It took forever to get me admitted, which these emergency situations usually do.  Terra and I didn’t really have any idea how serious things were about to get. When we left Dr. H’s office to head over the hospital, the nurses all hugged us . . .that should have been a good indicator.

I felt like complete hell by now.  I hadn’t eaten all day, and it was now around 5 pm.  I had a blinding headache, which I assumed went hand in hand with the sobbing.  Once I was admitted and wheeled to my room, the nurse explained to be that I was going to be put on a magnesium drip because my blood pressure was well above stroke range.  It took 8 nurses with 30+ years of experience 10 times of blowing out my veins in all regions of my swollen arms before they finally paged the head of Radiology.  Everyone was gathered around me when he arrived in my room. He had six walky-talkies around his neck and three pagers on his waist.  He commented on how I looked like I was in the middle of a scene from “Psycho”, found a vein, and hit it on the first try.  That was the last time I saw ever saw him.  I was ok with that!

Did I mention that I’m thirty-four years old, and before this day, I hadn’t been in a hospital since the day I was born?  I had never had blood drawn except my initial pregnancy panel.  Needless to say, I was petrified by everything I had already experienced up to this point.

The magnesium made me extremely sick – dizzy, nauseous, hot flashes, aches, pains, heart palpitations, extreme fatigue, and uncontrollable shaking are among the lovely side effects.  In addition to the magnesium, I had to have a catheter put in, and bag after bag of fluids were being pumped in to my body.   The nurses were coming in every fifteen minutes and taking my blood pressure.  They were gathering outside my door, and we could hear them talking about me in hushed voices.  The nurses, young and old, had never seen someone in my condition.  My doctor kept calling my nurses on their cell phones when they would come in to check my blood pressure, but they wouldn’t tell me what she was saying.  They just kept telling me to try to relax.  (I think “high anxiety patient” might be written somewhere in my chart – lol). We just kept asking about Ruby – we wanted to make sure that she was ok, and everyone assured us that Ruby was perfect.  I kept telling everyone who would listen that I hadn’t felt Ruby move or kick since about noon that day. Dr. H ordered an in room ultrasound, and Ruby was measuring at 3 lbs, 9 oz with a steady heart rate and no signs of distress.  This was the only news I cared about as I lay there feeling like a giant pile of hangover.

About six hours after I was put in IV fluids, I started to swell.  I was already swollen, but this was a whole different ball game.  My legs turned purple.  I couldn’t turn my head or bend my fingers.  My catheter bag was empty – no fluids were leaving my body.  I was getting sicker and sicker.  The scale on the bed showed that I had gained 4 pounds since I was admitted, and my blood pressure was not being controlled by the magnesium.  I only had a passing acquaintance with what was going on, and I kept trying to joke around with Terra and pretend this was all just ‘precautionary’.  But she was terrified, and although she was trying to hide it, it was all over her face.

Somehow, I made it through the magnesium-filled night.  Neither Terra nor myself slept.  I shook uncontrollably, prayed, cried out to God to get me and Ruby through this.  Terra pretended the things coming out of my mouth made sense, and she rotated icy cold towels on my forehead and neck.  My nurse came in at some point in the night and gave me a steroid shot to help build Ruby’s lungs in utero. When the sun came up, I felt relieved, even though I knew I had another ten hours of magnesium to suffer through.  The next day was more of the same.  Now, my arms were bruised and swollen, my head was pounding, and we still didn’t really know what was going on.  I have a vague memory of my mother-in-law standing by my bed and laying her hands on me and praying me and Ruby.

At the stroke of 5pm, my nurse came in and shut off the magnesium drip.  Within minutes, I started to perk up and feel better.  I still couldn’t eat or drink anything, but I was able to think somewhat clearly for the first time.  I was now 32 weeks and 3 days pregnant and receiving my second steroid shot to help strengthen my baby’s lungs.  Shortly after the magnesium was turned off and most of my sweat had dried up, Dr. H appeared like an angel to see how we were doing.  We were SO HAPPY to see her, I’m pretty sure I cried (again)! She told us she’d been on call all night, running around the hospital delivering babies and checking in on me via my nurse for the last twenty four hours.  She’d been observing my labs and blood pressure and urine, none of which was looking good to her.  I couldn’t believe that, because I felt so much better!  Dr. H told us about HELLP Syndrome, and told us that delivery was no longer a ‘maybe’ at this point.  Our baby had to come out in the next twelve to twenty four hours or both me and the baby would die.  Dr. H told us that induction was still a possible option, but that if my numbers continued to decline through the night, a vaginal delivery would not be feasible due to the time constraints of my rapidly failing health.

We were moved to a smaller room in another part of the hospital so we could rest up for whatever the next day would bring.  I hadn’t showered in so long, and I had been sick and sweating all night, so I was anxious to get cleaned up.  My legs weren’t exactly cooperating with that, so Terra helped me shower and get in to bed.  I still wasn’t allowed to have anything to eat or drink, but the nurse’s tech snuck me some peanut butter and graham crackers since I hadn’t eaten in literally days.  It was the most delicious thing I’d ever tasted!

For the first time since we were admitted, we had a quite and restful night.  I prayed myself to sleep and finally found some peace with what was happening to me.  I felt like God was telling me everything was going to be ok, and that Ruby and I were in His hands. I was hooked up to an automatic blood pressure monitor that took my blood pressure every fifteen minutes.  I slept through most of it! The next thing I knew, I was waking up and Dr. H was standing at the foot of my bed.  She told me that she’d slept in the doctor’s lounge that night, and that she’d been watching my readings and making her assessment of how to proceed.  Her diagnosis was in:  I had HELLP syndrome, and my kidneys were failing.  My blood pressure was dangerously high, and my blood was rapidly losing the ability to clot.  We had to get the baby out, and it had to be now.  When we asked if we had time to call our families (my family lives in St. Louis, which is five hours away), she stated that we could make the calls but that the operating room was already being prepped and that the anesthesia team would be in shortly to prep me for an emergency C-section.  In less than an hour, our baby would be here.image

I knew NOTHING about C-sections.  I had done all this reading on vaginal deliveries, breathing techniques, I had even reserved Terra and I the special ‘birthing suite’ for delivery.  I didn’t know how C-sections worked, I didn’t know what was going to happen to me or to the baby, and I didn’t know who was going to be doing what to me.  I was completely unprepared because a C-section had never even been on my radar.

I called my mom and expressed to her how much anxiety I was having.  She gave me wonderful advice:  she told me not to panic, that I was in God’s hands, and to trust the God was the one guiding the eyes and hands of my doctor.  She said if I started to feel myself freaking out, to just let it happen, trust the process, and try to enjoy the birth of my daughter even though it wasn’t what we planned.

The anesthesia team showed up shortly after we told our families what was going on, and I got a crash course on C-sections!  Before I knew it, I was being wheeled to the operating room.  Terra wasn’t allowed to come back there while I was prepped for surgery – instead, she went with our nurses to get scrubbed in so she didn’t miss the delivery.image

I was really scared.  My baby was about to be born two months premature.  I was loopy from exhaustion, stress, hunger, and organ failure.  But I also had excitement building up inside me. I knew I would be meeting my baby so soon, and this was a moment that Terra and I had dreamt about for over a year.  Although it wasn’t coming about the way we had anticipated, it was happening, and we just had to go with it!

I received my spinal block while standing sitting naked on a table in from of a very handsome doctor who reminded me of Taye Diggs. He made an awkward situation more comfortable by telling me a story about a patient he had who become so overcome with anxiety that they grabbed his hand and started sucking his thumb.  I felt better knowing that I hadn’t done anything too nutty while receiving my anesthesia.

The spinal block worked so fast.  Before my head hit the table, I felt the drugs moving through my body, making me completely numb from the chest down.  Dr. Taye Diggs was pinching various parts of my skin with the forceps, making sure I was totally numb, and he couldn’t believe how quickly it worked on me!  My nurse, who stayed beside me the entire time I was being prepped, encouraged me to take deep breaths while she told me stories of her son, “The Drag Queen”.

Once I was numbed, shaved, and sanitized (ha!), more people started coming in to the room. First, I was introduced to the NICU team who was on standby, and would begin caring the Ruby the moment she was born. There was a respiratory specialist, a neonatologist, and two nurses.  They had everything that Ruby might need just in case there were any immediate problems.  Next, my wife Terra was allowed to come in.  Finally, Dr. H made her appearance.  It hadn’t occurred to me that she would be the one performing the C-section, but I felt actual relief knowing that me and my baby were in her hands.  She came bouncing in and kept talking about how excited she to meet Ruby. And this is why we love her.

The details of how the procedure went are fuzzy.  I have memories of laughing with my doctors, and I think we even sang a few songs together.  But I remember very vividly the moment that Dr. Heidemann said “She’s here!” and held her up over the curtain for me to see.  I couldn’t hold her at that moment, but they placed her right by my head and I got to see what she looked like.  She was SO CUTE!  I looked at Terra and we both started laughing because she looked exactly like me.

And then . . . Ruby was whisked away, and that was the last time I saw her for two days.  The NICU team immediately began working.  They put in a feeding tube, gave her some shots, and took some blood from her foot.  They put a preemie diaper on her, which was huge on her little 3lb, 9 oz body.  They also gave her the cannula but she was never hooked up to oxygen.  She was born screaming, which is unusual for a baby born so early, and thanks to the steroid shots they gave me while I was on magnesium, she never needed anything but a little extra room air. Terra was with Ruby the whole time she was with the NICU team, and even went with her when they transported her to the NICU.

After they stitched me up, I had another catheter put in and was put back on magnesium for another 24 hours.  I wasn’t able to see Ruby for two days, and I wasn’t able to hold her for five.  I was hospitalized for 9 days with extremely high blood pressure.  Ruby stayed in the NICU for sixteen days, and her only issue was her size.  The hospital wouldn’t release her until she was five pounds.  Luckily, she loved eating, so she gained enough weight to go home rather quickly!

I missed out on so much because of HELLP.  I have a myriad of residual health problems even now at six months post partum.  Since I was on so much medication, and my body had been through so much trauma, on top of the fact that I didn’t get to hold my baby for days after she was born, my milk never fully came in and I was only able to nurse a few times.  I pumped every two hours for two months to get Ruby every drop of milk that my body would make, but I was never able to produce more than an ounce or two at a time.  I finally gave up.  Feeling like a failure has been the dominating emotion since having HELLP syndrome.  I also feel extremely thankful for doctors and nurses who knew what to look for and took the time to go above and beyond what they are paid to do in order to save mine and my baby’s life.

I’m fairly certain at this point that no one will ever understand what it is like to experience an illness like HELLP. In what was supposed to be the happiest, and most exciting time of our lives, my wife and I were overcome with anxiety, stress, illness, and sadness.  I have had the darkest days of my life since having my baby.  But I have also had experienced happiness like I never thought I could. I have been crippled by anxiety, I have alienated myself from friends and family because of my inability to be able to express everything that I have gone through.  At the same time, I have been able to learn how to make myself vulnerable to a few people and truly learn how to lean on another person.  I have strength inside of me that I never knew I possessed, and I like to believe that I passed that strength on to Ruby.

 

 

For more information about HELLP Syndrome:

Pre-Eclampsia Foundation

http://www.preeclampsia.org/health-information/hellp-syndrome

 

American Pregnancy Association

http://americanpregnancy.org/pregnancy-complications/hellp-syndrome/

 

March of Dimes

http://www.marchofdimes.org/complications/hellp-syndrome.aspx

 

Heart Health for Moms

www.hh4m.org

 

 

 

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My HELLP Story. Part 1.

hellp**HELLP Syndrome is an extremely rare disorder that effects less than 1% of pregnancies.  HELLP Syndrome is a combination of the breakdown of red blood cells (hemolysis; the H in the acronym), elevated liver enzymes (EL), and low platelet count (LP) occurring in pregnancy.  The combination of these complications commonly results in placental abruption, acute renal failure, liver hematoma, permanent liver damage, and retinal detachment. It may also result in death to the mother and baby if the baby is not delivered within 36 hours of diagnoses – it is an extremely aggressive illness.  You may have symptoms that mirror pre-eclampsia, such as blurred vision, nausea, dizziness, loss of appetite (which is pretty much ALWAYS an issue when you’re pregnant!), severe swelling with pitted edema (when you push down, the mark in your skin doesn’t go away), or upper right quadrant pain. 

Or, you may not have any symptoms at all.  I didn’t.  This is my HELLP story.

It was the day of my regularly schedule 32 week appointment.  In the past few days, I had clumsily transitioned from the second trimester to the third.  I went from feeling energized, rested, and operating in full-on nesting mode to practically falling asleep at my desk at work.  I had already spent two weeks on bed rest for high blood pressure, and looking back, I was putting a lot of pressure on myself to have an impressive end to my pregnancy.

That morning, I was cranky.  It had taken me forever to fall asleep the night before because it was getting hard to breath, but my wife was snoring the moment her head hit the pillow.  I had watched ‘Friends’ until about 2 am, and when my alarm went off at 6am, I had to take a huge breath in order to lift my body up over the side of the bed.  I stood up and immediately felt out of breath and sick to my stomach.  I thought “This third trimester is going to be a real treat.”  I recalled a cab driver 25 weeks earlier warning me that the third trimester might be worse than the first, and this being my first pregnancy, I figured the way I was feeling was totally normal.

As I got ready for work, I had to sit down more than once in order to catch my breath. I could feel my pulse in my head as it pounded in pain (I had a headache every day of my pregnancy starting at week 12, so I was pretty used to it).  When I brushed my teeth, the sink filled with blood from my bleeding gums, which had also become normal to me.  I had to sit down several times during the makeup and hair process because I had actual shin splints from the swelling – my God, the swelling.  None of my shoes fit – I wore flip flops to drive and house slippers around my office (the judges and staff attorneys just had to deal with it).

I stopped off in the kitchen to have my usual morning glass of water, which I chugged before heading to work every morning. It became somewhat of a ritual since I couldn’t have coffee.  I realized that I hadn’t eaten since lunch the day before, and I actually asked my wife “I wonder when all the crazy pregnancy cravings are going to hit.  Is it weird to crave water?”.  She did indeed think it was weird that I was craving water.  I chugged a second glass and I was out the door!

I’d had a 4d sonogram done on the day I was 32 weeks, but my little one had her hands in front of her face. The ladies who did the sonogram were so nice, they asked if I wanted to reschedule but I told them I would just have to be patient to see what my baby looked like!  Little did I know I would be seeing her face in just a few days.  When I got to the office that morning, I showed my coworkers the CD of what few 4d photos the techs had been able to capture of Ruby.  They gushed over how cute she was already, and everyone marveled at how awesome technology is these days. (My coworkers are thirty years my senior, and having babies in the eighties was apparently a whole different experience.)  Then, I sent out an email reminding everyone that I had a doctor’s appointment at 3:30 and would be leaving early.

Since I hadn’t eaten anything in a pretty long time, I decided to get an orange juice from our cafeteria. Three swallows in, an intense wave of heartburn swept over my digestive system, rendering me unable to eat the donuts that one of the judges had brought for the clerks.  In order to combat the heartburn, I filled my giant cup with water and got to work for the day.

My lunch hour came and went, and I was able to finish my orange juice. Terra and I had planned to meet at my doctor’s appointment and go eat a late lunch/early dinner afterwards. I decided to stop by the bathroom before I left for my appointment just in case the baby woke up and started kicking me in the bladder.  As I sat (breathlessly) on the toilet, I realized I hadn’t peed since the night before as I was getting ready for bed.  And I wasn’t peeing now – I didn’t NEED to.  I started counting the number of ounces of water I had consumed since the last time I peed.  It was 106.  One hundred and six ounces of liquid had gone in to my body in approximately twelve hours and I didn’t need to pee.  AND I was 8 months pregnant – I text Terra when I got to the car and said “I just have a feeling something is wrong.”

We waited an hour and a half to see our wonderful OB, Dr. Nicole Heidemann. Since being on bed rest, I was already seeing her every week. I was her last appointment for the day, which was a good thing because Terra almost didn’t make it in time to go back with me.  Dr. Heidemann delivers over twenty babies a month, so she is constantly running back and forth between her office and the hospital.  It was ok – Terra and I don’t mind waiting for greatness.

I hadn’t gained much wait during my pregnancy – nine pounds in 32 weeks to be exact. Aside from the swelling, most people couldn’t really tell I was pregnant. It was bizarre. While I sat in the waiting room I guzzled another 32 ounces of water since I knew I had to give my doctor a urine sample as part of my weekly checkup.  We were finally called, I was able to give a sparse urine sample, and I stepped on the scale as usual. I saw Nurse Kathy’s eyes shift when she saw my weight.  She’s pretty good at hiding any sign of panic, but I saw it.  I had gained 15 pounds in six days.  My thought was “I’m finally gaining pregnancy weight! YAY!”, completely oblivious that anything might be wrong.  My blood pressure was taken: 140/89.  I already knew that wasn’t a good sign, and that I would probably have to go back on bed rest, but I wasn’t worried at all.  I had absolutely no idea what was about to happen.

When Dr. H finally came in the room, she had news I could tell she did not want to share with me (I’m a crier when I get bad news – and a sobber when I’m knocked up).  Apparently, the fifteen pounds of weight gain was fluid.  My blood pressure was in a zone that was dangerous to myself and our baby.  And . . . the kicker – protein in my urine.  For generally healthy people who might not know what this means (I sure didn’t – I had to ask!) this means there was blood in my urine. In pregnancy, this put very simply means that your kidneys are injured and the blood is seeping in to your urine.  AKA – kidney failure.

At this point, Dr. H informed us that she needed to observe me for 24 hours, but that if her hunch was correct, we would be meeting our baby very, very soon.

 

 

Bless it, Baby.

So, I’m sitting here wondering what my first post should be about.  There are certain things I want the person reading (you!) to know about me.  More importantly, there are certain things I want to share with you about things I have experienced in the past year.  The past year has been chocked full of intense moments.  Excruciating pain, crippling fear and anxiety, and overwhelming, life-changing joy are right on top of the list.  Did you guess it yet?

I HAD A BABY!

sitting2

Yes.  That’s her.  I know what you’re thinking – that HAS to be a photo-shopped baby.  But she’s not!  Her name is Ruby, and that’s just her average Saturday morning “is that a bottle, or are you just happy to see me?” face.  My wife performed the insemination, I carried, and together we created this tiny, perfect person.  (More about that later!)

My wife (Terra) and I are two moms living in a cool neighborhood in Nashville, TN.  We were married in 2014 at the San Francisco Courthouse under a gorgeous skylight next to a statue of Harvey Milk. Terra and I love Nashville, mostly because it is the rhinestone on the Bible Belt that is the South.  Our county is one of only four democratic counties in the entire State.  We have an amazing Mayor, an up-and-coming school district, and a real estate market that has exploded like nowhere else in the nation.  Everybody’s coming to Nashville!

Last year at this time, Terra and I had a ton of stuff going on.  We were living in our condo downtown while our house was being remodeled, I was getting settled in to a new position at my job, and we were trying to have a baby.  As a lesbian couple, we have no biological access to the one element crucial for creating a baby – and that’s why someone invented the internet.  We searched for the perfect sperm bank, the perfect credentials, and finally, the perfect donor.  We did all of this in our pajamas from the comfort of our living room!  Technology for the win.

After months of taking vitamin supplements, tracking, charting, temping, and peeing on ovulation predictor sticks, FedEx delivered our magic beans right to the doorstep, cryogenically frozen, and complete with a tracking number and a giant sticker bearing the words “HUMAN SPECIMAN”.  Our neighbors never lacked for things to gossip about when we were living there!  Two shots of Patrón Café and nine days later, we got our first positive pregnancy test.  As the cherry on top, our house was finally finished and we moved the next day.  That was officially the last time anything went according to our plans!

More tomorrow . . .