This is the second in a series of posts I wrote (by hand, to be posted online at a later date) during my time with hyperemesis gravidarum.
The nausea started in week six. I had a great review at work, making me even more proud of my time and contributions there. I told my coworkers about the pregnancy, and everyone was super happy about it.
By the end of the week, I wasn’t eating much. I had an incredibly difficult time at the company barbecue, trying not to toss my cookies. It was a total shame, too, because the CEO’s wife is an awesome cook.
By the next week I was too sick to drive to work. It isn’t really safe to be on the freeway when you keep throwing up. It didn’t take long for that first ER visit for dehydration. They hydrated me, shot me up with some anti-nausea meds, and sent me home. The next three times I went to the ER, I got admitted to the hospital. When you vomit enough, it takes more than a few liters of IV fluids to get you back to “surviving.”
My life became a waiting game. See how long I can last between hospital visits, always rushed to the ER after two weeks of increasingly more serious dehydration. Hair an unwashed rat’s nest, small trash can clutched like a lifeline in my lap as they wheeled me to my ER bed.
It was a constant battle with my doctor, unfortunately. Thanks to the online resources at www.helpher.org, I knew that some women were able to get through HG without killing themselves or their baby. But every day was an emotional struggle for me. My doctor quite frankly did NOT know what he was doing.
This is what most of our conversations were like:
Me: “The zofran isn’t helping as much. I think I need more of it. I know I can take up to 32 mg a day. And I want the Benadryl. I felt best after that ER visit when they had me on both.”
Dr: “Let me go look something up.” *Leaves*
Dr: *comes back 15 minutes later after we hear him seeing to other patients through the paper-thin walls* “I don’t even want you on the zofran. And taking zofran and Benadryl together can cause heart complications.” [I haven’t been able to find where he got THAT information, in all my research.] “Let’s try Reglan.”
Me: “We already did. Remember? I had really bad side effects and it didn’t help the nausea or vomiting at all.”
…And so on. One memorable visit he even left the room to call the perinatologist in a nearby city (ours is a fairly small town). Not only did she say that he was doing everything she would do (when I was only on about 12 mg of zofran a day, mind you), but her only suggestion was to add in psychotherapy treatment. As if my husband wasn’t already having to take days off work just to drag my vomiting carcass to these asinine useless doctor appointments. No, let’s add insult to injury and ask me to take my unwashed self to a THERAPIST because maybe it’s all in my head. Normal pregnant women aren’t this much trouble.
And that, my friends, was the crux of the matter. Only ~1% of pregnant women get HG. Of that 1%, everyone has a different level of severity. This normal obstetrician in small-town Paso Robles said he hadn’t seen anyone as sick during their pregnancy as me—in the last 20 YEARS. Unfortunately, rather than refer me to a perinatologist or even a high-risk OB, seeing as he didn’t have the experience or the expertise—my doctor instead chose to adopt the mantra, “it will pass soon.” Conventional wisdom says that morning sickness usually abates after the first trimester. Which would have been fine if I actually had morning sickness, instead of HG (they are really nothing alike. I promise you.).
Week Eight was when I stopped being able to keep down any food or liquid, I think. I would vomit it right back up. Weeks 9-11 I had a PICC line, administering IV meds to myself at home that sometimes managed to keep me from throwing up for a couple hours. I was on TPN, which is basically IV nutrition fed to you via bags of fluids, vitamins, and straight-up lipids. I had already lost 12 pounds from my pre-pregnancy weight. On the TPN we managed to maintain my weight. I kept slipping farther into dehydration every day, though. I shouldn’t have been—the pharmacist mixing my TPN was very good, and knew what he was doing. Unfortunately, pregnant bodies are unpredictable and unique. I could see my urine getting darker every day. I could tell I was vomiting more often (a happy side effect of dehydration is increasingly bad nausea and vomiting, go figure).
It makes a crazy kind of sense. When you are pregnant your blood volume increases a LOT. I could feel my heart pumping differently. You could easily see my heartbeat in my abdomen, strong enough to show through my shirt. Baby needs amniotic fluid, and that fluid is recycled and replaced by your body fairly often. As quick as every three hours, later on in a pregnancy. Obviously my body needed way more fluids, especially with all the persistent vomiting.
Finally I had a doctor appointment where my concerned and angry husband held my hand as I sobbed on the exam table. The doctor said, “Look, don’t you want to see your baby?” and I couldn’t force myself to look at the ultrasound screen. I cried, “No! I don’t want to see my baby because you make me feel like it has to be me or the baby!”
Looking back, that doesn’t make a lot of sense. I was under considerable distress. The struggle for all HG women is of course not as simple as “me or the baby.” I think many of us would be grateful if it was. There are plenty of moments I would have gladly given up my life (and ended my own suffering) if it meant my baby would be just fine. But up until 24 weeks, your baby has zero chance of surviving outside your body. So the struggle is really between mom & baby vs. Just-mom. There is a staggering number of HG women who are forced to make that choice due to inadequate, uninformed, negligent health care. Doctors who tell you “it will pass soon” when you are in week ten, and most women with HG don’t start to feel any relief (if they ever do) until week 20. Nurses and office staff who treat you like a spoiled drama queen vying for attention, because normal pregnant women are never this difficult. Volunteers with your health insurance company who promise to be your “advocate” and then spend a half hour of your depleted energy resources lecturing you on how exactly you are DAMAGING your unborn baby because you are unable to keep your prenatal vitamins down. Even well-meaning friends and family, saying things like, “Oh gosh, I had that too, I couldn’t eat anything except for (fill in the blank) for a few weeks.” (Nope, sorry, if you could keep ANYTHING down at all then you do not know how bad I had it. And don’t you dare try to tell me how horrible it was to be nauseous for months even though you never actually threw up. HG women have the pleasure of vomiting blood—regularly. We tear holes in our esophagus. Dislocate ribs from the heaving. And deal with thousands of dollars of dental work because our poor teeth are not resistant to constant bathing in stomach acid.)
Of course, when you’re that sick, you don’t have the energy to help the people you love see how they might be able to help or comfort you in better ways. You just have to lie in a dark room (because lights make you nauseous) with the cat locked out (because if he jostles the bed you’ll puke), with no sounds (because they also make you vomit), forbidding anyone from cooking anything ever in the house (because you can smell things from a mile away and ANY smell makes you throw up), just trying to remind yourself that everyone means well and it’s the thought that counts. It’s a good recipe for producing a very bitter pregnant woman, at least in my case.
Well-wishers tend to have the wrong focus, too, while we’re on the subject. They might ask how things are going, and you might tell them you had to up your meds again and might have to be admitted to the hospital again. And so often, they immediately come back with, “but how’s the baby?” There’s a couple problems with this. Some HG moms might be dealing with a DAILY struggle of trying not to resent their unborn fetus for ripping away their life and their very health and survival. We are strong, but devastating illness takes a huge toll on the psyche. Every single one of us is aware of the possibility of a complete cessation of our misery, with a quick 100% recovery, if we were to choose a “therapeutic termination.” Some doctors even force their patients into one, unaware that there are so many other things to try to get an HG mom and her baby through the entirety of a pregnancy. No one with HG (barring other complications) should medically HAVE to terminate. But many do. And some days, only the stories of how tortured and regretful they are, ten years or more later, kept me from telling my husband that we also needed to give up, and put my sanity before our desire for a child.
So when someone shows more concern for the fetus than the obviously struggling mother, she can feel belittled. Every single day, every single MINUTE is a struggle. And she’s still here, still fighting. Sometimes a little recognition for that, for how strong she is and how much willpower it must take to just keep going, would be great.
The other problem of course is that HG babies are hearty things. The root of the entire issue is really that this little growing bundle of cells is SO HEALTHY that it makes mom uber sick. The HG baby is a supremely effective parasite. They have lower rates of miscarriage, and so long as dehydration is effectively treated and hopefully avoided the farther along the pregnancy is, they even end up averaging with higher birth weights. They soak up all the nutrients they need from mom before mom’s body even has a chance to say “wait, what about me?” So no, I’m not worried about my kid. That little one is sending such strong hormonal signals to my body to give up everything it has to support that growing bundle that it makes me deathly ill. I don’t know if Charlotte Bronte, dying in her fourth month of an HG pregnancy, knew that her baby was essentially killing her by being too good at growing. It seems flawed, of course, for a parasite to take so much from the host that the host actually dies before the parasite can survive on its own. But then, what do I know about the evolutionary need for HG?
What I do know is what HG is like. The toll it takes on the mother, emotionally and physically. And I know that every time someone asks “but how is the baby?” a small voice in my head says, “who the hell cares?”
A shocking confession, maybe, for an expectant mother. But you don’t get to judge unless you’ve been here. You don’t get to tell me I’m ungrateful until you, also, experience this. The happy discussions after the wedding about when we wanted to start trying. The unparalleled joy and closeness when we decided to stop waiting for everyone else’s reasons and start trying because we knew it was the right time. The sense of adventure when you’re tracking temperatures and marking calendars. That first faint positive pregnancy test, when you don’t know how you can possibly wait one more day to test again. The conversations planning the rest of your life with this wonderful, forever change.
And then the sickness. Sapping your strength, your resolve. Knowing in the slightly better moments that you would NEVER choose to abort a child that you had made with the love of your life. Not even having the strength in the bad moments to feel appalled at how much you wished for a random miscarriage, to take this awful looming choice out of your hands. Watching your husband’s face day after day, as he realizes that he might very well have to choose between the child he’s always wanted and the sanity of his beloved life partner.
Other moms get to plan registries, and “nest,” and spend nine months hoping they are eating the right kinds of healthy foods to support their baby. They get to share ultrasound pictures, sock away money from being able to work during most of the pregnancy. They have nine months to prepare their hearts and minds and environment for this new life.
HG robs us of that. We HG moms often miss out entirely on the “joys of pregnancy.” We don’t know what normal pregnancy is like. The first time I felt the fluttering that was definitely the baby moving, I learned to resent it because it made me MORE nauseous. No joke. I miss my life. I miss working, and being a contributing member of a team. I miss game nights with our friends. I miss that uncomplicated certainty that we wanted a child and were happy to be pregnant. I miss my health, my appetite, my gym time with friends. I miss the person I was able to be before all this. A lot of HG moms end up with anxiety issues and complex PTSD. Thanks to a healthy knowledge of self, I can already feel it taking effect. I will never be the same. I will always have to live with the knowledge that I wished to end my own suffering, at the price of my child’s life.
I’m not really through the woods yet. With a new doctor and much better treatment, I can write this a tiny bit at a time and even walk between the kitchen, bathroom, bed, and couch. Huge improvements, all. But this is week 16. And the HG still has its claws firmly embedded in me. So I take it a day at a time. And hope with every fiber of my being two things: that I will be one of the women whose HG recedes ~week 20, and that I won’t have the dreaded third trimester relapse (yes, it’s a thing, and words cannot express how terrified I am of it).
Best of luck to all the other HG moms out there. I know your pain, and we are not alone. I love you and admire how strong you are. I don’t judge your thoughts or decisions. I hope for all our sakes they keep doing research and find better treatments. Maybe someday we’ll know why HG happens. Maybe someday.
You can find the other posts in my series on hyperemesis gravidarum here.