Today is World Preeclampsia and HELLP Syndrome Day and it always leaves me reflecting about that OTHER time my body was pushed to the very limits… that other time I faced death. Reading the essay below that I wrote on Harrison’s first birthday is like reading the words of another person, like it was another lifetime. Cancer can really mess with your perception of time and priorities. During cancer treatment, I would sometimes think back to my HELLP syndrome experience and be encouraged that my body had proven to me once before that it is amazing and can overcome so much. I would also think about Harrison, and the strength and grit he showed in that NICU — teaching all of us that absolutely nothing is out of reach. I can not believe this sweet little boy in all those photos below has his last day of Kindergarten tomorrow (I’m not crying, you’re crying). I also think back to when I was planning my second pregnancy, so worried I was putting myself and the new baby at risk and leaving Camden to be a single father. I was told the chance of having HELLP syndrome again was about 40-50%. Sure enough, I would go on to deliver a healthy full-term baby girl and we both did great (well except the whole finding out I had cancer a few months later thing). And guess what — after discussing my recurrence rate for that stage 3c cancer with my oncologist… 40-50%. Hey, I’ve beaten those odds before — why not again?
I’d never seen someone’s face light up so bright until I saw my husband’s reaction to “it’s a boy”! We we’re filled with so much excitement and joy about having our first baby and had been having a pretty darn easy pregnancy so far. I worked night shift as an oncology nurse at the time with 3 other nurses who were due the same month… needless to say it was baby talk all the time! One night at work when I was about 26.5 weeks, I decided to take my blood pressure because I had a headache and noticed some increased swelling in my ankles. I was surprised to see it was up around 140s/90s, especially because I usually run low. I figured it was a fluke and went about my shift. A few nights later I noticed even more swelling and my blood pressure hadn’t budged — some girls I was working with that night urged me to notify my doctor in the morning after my shift. I called my fabulous OB to fill her in, and so began the never-ending blood pressure log and frequent clinic visits.
I was started on a blood pressure medication and was told to take it easy but there shouldn’t be any concern. As the days passed by and my blood pressure kept rising, I was started on higher doses and additional medications to control it — the pill count was quickly rising. I was averaging around 160/100 but everything else looked normal (labs and ultrasound — other than baby measuring slightly small — were all good) so the plan was to continue meds and not over-do it. One morning after a long shift (29 weeks, 6 days) I stopped by my OB office for one of my weekly appointments — luckily I work in the same hospital she’s in so I could stop by anytime. We reviewed my blood pressure log and medications as usual but this time we had something else to be concerned about, my urine had a high amount of protein in it. Now I was officially marked with the preeclampsia stamp, ugh. After a long discussion and some resistance from my end, I was admitted to the hospital immediately. I insisted I would be careful and lay in bed if I could just be at home, but with my blood pressure not responding well to medications anymore and now preeclampsia, my doctor just didn’t feel comfortable letting me go. My husband and I got settled in for what we thought would be several weeks of living in the hospital, the thought was overwhelming. I was not ready for this! I had so much more to do at home before the baby came. I hadn’t even had my baby shower yet! AND my maternity leave starts now? I hadn’t even filled out the medical leave paper work and if I had to be in the hospital for several more weeks that cuts into time at home after the baby, just didn’t’ seem fair.
In the hospital, my blood pressures stayed the same. They did more labs and urine tests which were all fine except high protein. The swelling, however, was getting worse and worse. I had gained over 20 lbs of fluid in just a few days and I was puffed up everywhere! My legs and ankles felt like tree trunks, my hands were like balloons, and my face close to unrecognizable… I was even swollen up my back — it was getting pretty uncomfortable!
This dragged on for 5 more days until I woke up on a Sunday morning around 7am (30 weeks and 5 days) to some terrible (!) abdominal pain. I woke my husband up saying my stomach hurt so bad I couldn’t move. He got the nurse so I could ask for some indigestion medication — I was sure my stomach being upset was due to me chugging a bunch of yucky hospital orange juice the evening before when our little guy wasn’t cooperating during nightly fetal monitoring. I drank some milk, took some Maalox and turned on my side… nothing was helping and it got much worse very fast. Pretty soon I was barely able to express the amount of pain I was feeling. This is where everything starts to become very fuzzy. More and more staff members were in my room asking me questions and setting up for ultrasound. I was asked over and over again if the pain was worse on my right or left side and sure enough the right side is where I began to feel the most intense pain (location of the liver). Before I knew it I was being rushed over to the labor and delivery side and I knew something was very wrong — pressures were still climbing. Out of nowhere while they were still assessing me in L&D, my OB shows up. I would find out later she wasn’t on call and wasn’t even supposed to be in that day. No one had even paged her! She just wanted to check on me and when she got to my room and found it empty with the bed gone she knew something was up. I still don’t know what made her come in right at that moment but I had never been so relieved to see a person’s face in my life! She recognized what was wrong right away, checked my labs, immediately started high dose IV Magnesium, and gave me the news. Class 1 HELLP Syndrome. And we have to deliver now! I remembered learning about HELLP in nursing school but I didn’t remember any specifics, just that it was “the bad one”. My liver enzymes were close to 3000, platelets down in the 30s, and blood pressure now 226/124. She told me there’s no way we have time to induce labor and I wouldn’t be able to tolerate it anyway, I needed to have an emergency caesarean. I remember begging to not be put under general anesthesia because I truly felt like I wouldn’t wake back up, I remember feeling like I was on fire, I remember trying so hard to listen to and follow instructions while going back into the OR but feeling like I didn’t have control over my body, I remember hearing someone groaning and yelping loudly then realizing it was my voice, and I remember my husband frantically calling family to rush to the hospital. Baby was coming! (He told me later this was the point when he was told to contact next of kin and prepare for the worst, there were a few moments he truly thought he’d be a single father. It kills me to think of the pain and fear he was also feeling -he’s the real hero in this story, at least I got the drugs to not have to “live” it).
I’m told I was most critical the first night; I was basically kept sedated and pumped with magnesium and other meds trying to control my pressures and avoid stroke/seizure. I don’t remember much of anything from the next days. I vaguely remember being woken by nurses to push on my fundus and to give endless medications through my IVs, several doctors and students in and out like faces just floating around, and my husband trying to show me pictures and looking at me with a concerned expression. It was hard to focus. I’m told all I would ask for were ice chips and sleep. I had hemorrhaged a lot and had no strength to be a part of the world yet. I somewhat remember my doctor coming in a few times a day saying things like we wouldn’t have had another hour… I was the first HELLP case she’s had…labs, swelling, and pressures are slowing improving… not making any urine yet… don’t let anyone push on my liver…not allowed to sit up… start with jello…. It’s a blur.
Three days after my son was born I was wheeled down to the NICU to meet him for the first time. My sweet husband had the video camera ready for the special moment and all I could muster up was “but I’m pregnant” with a blank face. I remember seeing his defeated face and I knew I must be confused. He had held our little family together through the horror of the past few weeks and had to have been so exhausted. He coaxed me to hold the baby’s hand and talk to him, I reached in to that tiny little two-pound miracle and knew I had to get stronger and snap out of this haze. Something amazing had happened and I’d be damned if I were going to miss another second. It wasn’t immediate by any means but before I knew it I was settling into the new routine of being a NICU mom, and was getting better. I was starting to request to be in the NICU more than my own room (I had been transferred back to the mother baby unit by this time). I had lost almost 30 pounds of swelling and could breathe and walk (at a snail’s pace) again. My pressures were still high but manageable (at least not dangerous anymore) and I was ready to go home after about 2 weeks in the hospital. We had been nestled in our safe little room going back and forth spending time with baby and resting…. I was not prepared for the reality of leaving the hospital without him. I remember the silent drive home, very aware of the empty backseat… all I could do was cry (as Oprah would call it — the ugly cry). I felt thankful for both our lives but I had also never felt so cheated… this was not how it was supposed to be, I felt every inch of the distance that was growing as we left that night.
Our NICU doctors had been giving us encouraging news all along; Harrison was doing wonderful and was a fighter. He only needed breathing support for 5 days (thanks to my doctor who had me in the hospital in enough time to give me betamethasone), he was packing on the ounces, and would soon be ready to learn to nurse. He just needed time. Our NICU stay dragged on and on and on and was full of hectic traveling back and forth, sleeping on hospital furniture, and exhausting long hours. I hated watching such a tiny sweet thing get poked and prodded non-stop but he took it like a champ, met all his goals, and taught my whole family what true strength is. We had so many special “firsts” in that NICU and the staff made every effort to allow us to be involved in everything. Six weeks to the day was the magic number! It was difficult to say goodbye to all the amazing nurses and doctors but we were excited (and nervous) to be at home.
So there we were — a little family with a tiny baby… and our lives could finally re-begin.
A year later, our son continues to amaze us every day! He’s the funniest, silliest, and sweetest little boy I’ve ever met! Sure I still feel a little cheated when I hear perfect full-term birth stories or think about the first days I missed, but looking at his little face is an immediate cure. Not a day goes by that I’m not thankful for our happy ending — knowing that not all who are faced with this are as lucky. We may not have had the typical start but I’d do it all a million times over if it means I get to be that sweet boy’s mommy.
This post originally appeared on Here Comes the Sun. It is republished with permission.