Our HELLP journey

Before I was diagnosed with HELLP I had never heard of it before. HELLP is a variant of preeclampsia. It is life threatening to mother and baby if not treated and the only treatment for HELLP is immediate delivery. HELLP consists of 3 things; high blood pressure, elevated liver enzymes and low platelets. After doing (way too much) research on it, I have one conclusion…the cause of it is really unknown. There are some speculations but nothing has been proven. Most often, HELLP comes after a woman has developed preeclampsia which is high blood pressure, swelling and protein in your urine during pregnancy. Women who develop HELLP often have to deliver right away no matter what the gestation and in turn a lot of babies are pre-term. Mine, however, was a little bit different.

I developed HELLP at 38 weeks 2 days, before anyone even realized it. I had no symptoms of preeclampsia AT ALL. I had no protein in my urine, no rapid weight gain, no swelling. Actually everything was normal up until my 37 week apt. At my 37 week apt, I had planned to get an ultrasound to check Dougie’s size, and to our surprise my fluids were really low. But Dougie’s size was great and his heartbeat was right on target. The doc put me on bed rest until my next appointment, ordered me to drink lots and lots of water and wanted to see if my levels would come back up. I wasn’t too alarmed, because we had learned that your fluid levels decrease the closer you get to delivering and we also knew that fluid levels could fluctuate by the hour. The same night I was put on bed rest, I woke up in the middle of the night with some stomach pain. I wasn’t sure what it was but it was intense. Labor pains?? Who knows, I had never been in labor before. I toughed out the pains for a couple days but the pain increased. The pain was so intense but was relieved by Tylenol. The pain was in my upper stomach, under my ribs. It wasn’t on a particular side and radiated through my back. By Friday, the pain was causing me not to be able to sleep so I called the doctor. I was met with the same thing that everyone was telling me. The pain was most likely heartburn or the baby’s foot in my ribs, take some Tylenol and wait it out. Over the weekend, the pain became overbearing. When the Tylenol wore off, the pain was so intense I couldn’t take deep breaths. I was taking as much Tylenol as I could and it would provide relief but not for long. By this point, I know some of you are thinking why in the world didn’t you go to the hospital. And to be honest, I can’t answer that question. Other than to say, I had called my doctor and was told that the pain was “normal”. I thought I was just being a big baby and figured I would be having a baby soon. By Monday the pain was more intense and started radiating up to my neck. I could barely turn my head. I assumed this was because I was sleeping funny. I called the doctor again, told them what was happening and was told to just hang tight because I had an apt the following day.

I was texting friends asking them if this was normal and everyone said they didn’t know. I remember one of my friends asked if it was contractions and I laughed and said “well I don’t know, I’ve never been in labor before!” I knew that it most likely wasn’t contractions though. This pain was not letting up and we had learned that contractions come in waves. And when they stop you know it. Well this was constant and the pain would go away with a Tylenol so I figured it wasn’t contractions.

The night before my doctor’s apt I was googling “stomach pain during pregnancy” and was even brought to a page about preeclampsia. Doug and I both read it and it says very clearly on some sites that the pain is usually localized to the right side. Well, this wasn’t on the right side and not to mention I had NO other symptoms so we concluded this was not what it was. To our surprise, that is exactly what it was.

By the time our next apt rolled around that next morning it was already too late. We were told that Dougie’s heart was no longer beating. At the time, the doctor didn’t know why. He said it was most likely caused by a cord accident or something like that. He did warn us that we may never know what caused it. He had no idea that I had HELLP and asked that we wait until Friday to be induced. I remember thinking “FRIDAY!?” I immediately told him no and told him that I could not live another day knowing my baby was dead inside of me. So I was admitted to the hospital that day.

Once everything was said and done, Doug and I realized that if I had waited until Friday to go to the hospital, I most likely would have died. Even the nurses told us this. My liver was on the verge of rupturing and my blood pressure was rising so high that the possibility of a stroke was very high.

After consulting with a high risk doctor, we now know that HELLP caused Dougie’s death. He was 100% certain of that. He stated that the stomach pain I was having was a symptom, although not a typical symptom. After brainstorming with him, I remembered that a few weeks before I had the stomach pain I did have some right arm pain but had assumed that I had a Charlie horse in it. He said that that was most likely a symptom too but we may never know for sure. He did tell us that my case was extremely rare as I didn’t have any other symptoms, not even protein in my urine, which 99.9% of cases have at least that.

The fear of HELLP again weighs heavily on our minds for the future. We have been told that the risk of getting it again is about 15%-20% but that percentage decreases with the same partner and if you do get it again, you will most likely get it later in your next pregnancy than your last. (This is good for us, considering I didn’t get it until 38 weeks.) We have sought out an excellent Maternal Fetal Medicine doctor and are very confident with our care for the future. Our future pregnancies will look completely different than our first but as long as the outcome is different we will be entirely ok with that.

The days after…

For 3 days we remained in the hospital. Magnesium sulfate running through my veins, my blood pressure still elevated and still a fear that I would develop eclampsia. Our hospital room was our sanctuary. We stayed in the same room we delivered little DJ in and for some reason that was comforting to me. This was the last place I held my son, felt his skin, kissed his forehead and I didn’t want to leave. I knew as soon as we left our cocoon, it would somehow make it even more real and I wasn’t ready to face that yet.

The day came when we were discharged. We were blessed with the sweetest lady as our nurse that morning. She was so nurturing, caring and compassionate and turns out went through the same thing we just went through 30 years ago. She shared her story with us and wanted to truly listen. She was a blessing and I know now that DJ sent her to us.

I asked to go home and she pretty quickly had our doctor in our room and we were ready for discharge. Doug went to get the car while I waited in the room. Doug was so strong through all of this. He walked to the car knowing that an empty car seat would be greeting him in the backseat. He quickly removed the car seat out of my sight, pulled the car around and came to get me. I stared out the window while Doug was gone. It was silent in the room and I could feel Dj’s presence. A ray of sunlight shot down from the sky and I knew he was there. Tears streaming down my face, unable to comprehend that THIS was now our story, I turned to Doug and told him I was ready. I wanted to walk out but the nurse said I had to be in a wheelchair because that was hospital policy. I sat in the wheelchair with a blue memory box in one hand and tissues in the other. I was sobbing. I remember being rolled down the hallway and people were visiting with all the new babies. People stared intently not knowing that the only thing I had left of my son was in a blue box on my lap. I wept and did not make eye contact with anyone. It was the longest ride of my life.

Driving home, we cried, the world zoomed past us…life going on. I was confused…didn’t the world know that we had just lost our son?! I sat there wondering how I was going to go on. Devastated, heartbroken and defeated…I held onto Doug’s hand tightly. I knew what was waiting for us at home, a house full of baby things. My sister-in-law had hurried around that morning, cleaning up our house and placing all baby things in the nursery (so thankful for our amazing family through all of this). Doug and I pulled in our driveway and took a deep breath. Doug said to me “All we need to do is make it into the house.” And with that said…we rushed in.

We entered our front door, dropped our stuff and I began to sob. Doug held me for what seemed like forever. It was hitting me that this is OUR story…there was no changing it, redoing it or fixing it. This was our reality.

Our Birth story (part 2)-6 amazing hours filled with love

Dougie was born at 5:54am and weighed 6lbs 9oz. He was perfect. I’m not sure what I expected, but once I found out that he was dead I was expecting something morbid, you know…a dead baby (whatever that may look like). But he didn’t look dead…he was perfection. Perfect nose, round little face and was long, like he would have been tall! They put Dougie on my chest and announced he was a boy. I remember not being very excited and thinking, “I knew he was a boy”. I immediately became upset. Angry at the world for Doug…all he wanted was his first-born to be a boy and here he was…so sweet and precious but dead. It was an eerie feeling. There was no sound…pure silence. No baby screams…NOTHING. I won’t forget that silence, it haunts me. Doug took Dougie off my chest and gave him his first bath. Something I am so grateful that he did. How brave is that?? Giving your dead son his first, last and only bath. The thought of it makes me fall even deeper in love with that man. He is the brave one!

In the midst of all of this, I had some placenta complications. (Enter second time I thought I was going to die.) I’ll spare you all the gory details. I am thankful for my doctor who was super patient and waited almost an hour to see if I would deliver the placenta on my own. I kept asking the doctor if he was worried and although he was telling me no, Doug told me after the fact that he saw the nervousness in his eyes. There were 2 options the doctor informed me, surgery or manual delivery, both of which were not really an option. The first, surgery, wasn’t really an option because they were afraid I would bleed out and the second, manual delivery wasn’t an option because of the pain it would cause me. I hadn’t had any pain meds at this point and the doctor said I wouldn’t be able to tolerate that pain, so he said we shall wait and see if I can do it on my own. But alas I didn’t. The doctor asked me several times to click my little pain button thingy but I refused. I was terrified to fall asleep and all the meds did was make me tired so that wasn’t going to happen. I told him to just go get it. He worked on me for about what seemed like forever but I’m sure it was only 10/15 minutes or so and finally, the placenta was delivered. AHHH relief, I saw the light at the end of the tunnel and for the first time wasn’t afraid for my life. Now I could enjoy my baby boy.

We kept Dougie for 6 amazing hours. We held him, loved on him and family came to meet him. Doug and I had a couple of hours alone with him and to be honest, I am not even sure what happened in those couple of hours. For a short period of time, we got a taste of what being a family of 3 would be like. And it was WONDERFUL! The nurses were amazing and helped us make a memory box, took pictures for us and even cut a lock of Dougie’s hair. I remember being so excited he actually had hair. I was convinced he would be bald because that’s how I was when I was born, but to my surprise, he had a head full of hair! I find myself daydreaming often about those 6 hours we got to spend with him and wishing I could do those 6 hours all over again. If I could have the time back I most certainly would have given him more kisses, held him a little longer,smelled him, savored every second, minute and hour with him. I constantly wonder if we gave him enough love while he was here.

So many questions running through my mind on a daily basis, sometimes I crave the blissful feeling of not knowing what it is like to lose a child. It’s truly all consuming…

Our Birth Story (part 1)

I decided the best thing for me to do is to just start typing in order to get everything out. I have so many thoughts running through my head over everything that has happened…it’s hard to sort through them all on a daily basis. I won’t bore you with details of the pregnancy…simply because there isn’t much to tell. My pregnancy was perfect; no morning sickness, heartburn, indigestion and no extreme weight gain. Honestly…I LOVED it and I miss it. Not sure if the only reason I miss it is because I know that was the last time DJ was alive…just me and him. I would talk to him daily, tell him all the things I was going to do with him and most of all just tell him that I loved him. He was a mover and a kicker and that always made Doug and I laugh, we enjoyed those moments. Had I known what our outcome would be, we would have relished those moments a little more often.

The day we found out that DJ’s heart was no longer beating was a day that is so vividly stuck in my mind; I know I will never forget it. We were 38 weeks and 2 days…how could this happen?! The night before, Doug and I had prepared for a baby. I had been having some stomach pain the whole week before and for some reason we just knew that this appointment may be different than all the others. We went over our “worst case” scenario, which now seems like the best case scenario. We had planned the whole time for a natural non-medicated birth. We took Bradley classes, did our research and were ready. Our “worst case” was a c-section or being induced that day, never did it enter our mind that the worst case could be that baby DJ’s heart was no longer beating.

I will never forget the ultrasound tech placing the wand on my stomach and vigorously shaking. She looked at me and asked when the last time I felt him move was, I quickly replied that it was that morning maybe around 6 am. She immediately left the room and my heart hit the floor. I looked at Doug and told him that I was scared; he hugged me and reassured me that everything was fine. At this point, it still did not cross my mind that DJ was dead. She was gone from the room what seemed like an hour but was probably only 15 minutes and came back in with the doctor on the phone. I’m not even sure what his exact words were but I got the gist of it…that my baby was dead.

The next 24 hours are a complete blur. To be honest, I’m not sure how we even made it home. Doug will tell you that driving us from the doctor’s office that day was probably the most dangerous thing he has ever done…he has hardly any memory of it either. I just remember holding hands and both of us crying in disbelief. We later met with the doctor and were given our options. I immediately told him that I wanted a C-Section which he quickly talked me out of. He explained that I am young and if I could have a vaginal birth that’s what he would want me to try for. He wanted to induce me but told me that I could be completely comfortable with an epidural. At this point, a natural birth was the last thing I wanted. I agreed and we were told to be at the hospital to be induced at 430pm.

We were quickly ushered to our room when we arrived. A nurse came in and immediately hugged me and then got right to business. She explained the process and quickly started getting me prepped. She took my blood pressure which was pretty high, she said not to worry though, I did just find out my baby had died, and she said they would watch it. This is when things got very blurry. I remember her coming back in sometime later and telling us that she had some bad news. She told us that my platelets were really low, confused I asked what that meant and she informed me that I would not be able to get an epidural because they were afraid since my platelets were so low I would be at risk for paralysis. I asked what my pain options were and they said just general pain meds. I had no clue that these “general pain meds” do absolutely nothing for the pain, only make you drowsy. Bad news again, my blood pressure was continuing to rise and now they were concerned about that, they wanted to put a blood pressure cuff on me to monitor it every 10 minutes. Every 10 minutes, BEEP BEEP BEEP. Doug and I would both look over at the monitor. 150/100…155/102…160/105 It was not dropping at all. I remember this part very vividly…the nurse came in again and said she had more bad news. Doug and I sighed and asked what now. She said that my liver enzymes were off the charts and they believed that I had something called HELLP. I had no clue what that was at the time, and that’s a good thing. She went on to explain that it is a very rare condition associated with preeclampsia and rattled off some small percentage of women that get it. I was scared but at that moment I did not grasp the severity of the situation. I did ask if I was going to die. I remember the anesthesiologist saying “well that would be extremely rare” while my nurse reassured me that she was going to make sure that didn’t happen. For the next 12 hours, I fought for my life and labored to bring my beautiful baby boy into this world.

I told Doug 2 times during all of this what I wanted to happen if I died. Yes…I really wasn’t sure if I was going to make it that night. I was scared and was trying to face the reality that I may not live. All I could think about was my husband, who is the most compassionate, loving, caring man you will meet, not only burying his son but also his wife. I needed him to know that I would want him to go on without me although that was the last thing he wanted to hear me say. He was by me the entire time, he did not leave my side. He labored with me, reassured me and gave me the strength to get through that awful ordeal. He was A.MAZ.ING. I can’t imagine what it was like for him watching all this unfold. How helpless he must have felt. But he got through it and more importantly got me through it.

To Be Conitnued…