-----Hyperemesis gravidarum is a very misunderstood sickness and it is hard to explain (without writing a way too long post like this) and therefore can be a very lonely, scary, frustrating illness to have. I want to say this right now though: The most important part of this entire post is the last paragraph.
I will start at the beginning. When I was about 5 weeks pregnant with my first, Isaac, I started throwing up and feeling extremely nauseated. Morning sickness, right? That's what everyone told me. I was so nauseated that I couldn't eat or drink anything. Picture you, with the flu, the moment you are bending over the toilet to throw up-just that extreme, "it's coming up", panicked nausea-24 hours a day. It does not come in spurts, or waves or at different time, it is ever present. I couldn't put food in my mouth, look at food, smell food, even water-I could be gagging it up before it went down my throat. I quickly grew weaker and weaker, and lost weight quickly.
I don't remember if I called the doctor on my own but I do remember that I had to have someone drive me there-I was too weak to do so myself. Dehydration and malnutrition also cause an ability to concentrate, extreme muscle weakness, dizziness, and a feeling of being "out of it". There is no way I could have driven myself. Finally there, the doctor diagnosed me with hyperemesis and I stayed over night in the hospital-I think it was two nights actually. I was so miserable I don't even remember. After being given IV's, Jeff came to pick me up and brought me home. I remember this and we can laugh about it now-Jeff was hell-bent (and probably scared to death) driving me home and was going to do everything in his power to help me not get to that point of hospitalization again. He drove into a Wendy's and said, "You are going to eat. I am getting you a Frosty." I said, "I can't do it." He insisted. I managed to choke this small little Frosty down my throat but within seconds of finishing it I threw the entire thing back up right into the bag. It was still cold! I remember giving him that "told you so" look. It all felt so hopeless. There was nothing I can do to control it or help it...my body was reacting to this pregnancy like it was being poisoned.
I was told my main goal was to avoid ketones in my urine-a danger to the baby and the first thing that happens after prolonged dehydration. I had to go back weekly to test for these. Back then (this is '93) I don't think there was any medication they could have given me. (More on that later.) So I laid in bed-literally-laid in bed for 10 weeks. I managed to eat the tiniest amount of calories and drink enough water to sometimes pass, sometimes fail those ketone tests, but I was lucky in that I managed to never need an IV again. Sleep was my only comfort. I would stuff a pillow under my stomach because it would hurt so badly (from not having any food in it and from throwing up) and will myself to sleep like that every night. I lost 15 pounds by the end of those 2 1/2 months.
Another thing that hyperemesis does is cause your sense of smell to go off the wall crazy-I know this is common in the first trimester but it seemed so out-of-this world intensified. Picture every smell exaggerated 10 times over. If my poor hungry husband made himself a frozen pizza it would just kill me...for me it was like someone holding a rag soaked with a concoction of 100's of chemicals over my face. It would cause my nausea to hit the roof. I would beg him not to cook anything, not to open the fridge, not to get near me-not to even walk through the door of the bedroom. If the outside door opened I could smell the air-it smelled terrible to me. I swear I could tell you what the neighbors were cooking. When you have hyperemesis, you just want a giant bubble around you-you can't stand the smell of anyone or anything. I think he muttered under his breath jokingly many times those 10 weeks, "I guess the honeymoon is OVER." -we had just come home from ours a couple weeks before this all started. It was very stressful.
I am so lucky, SO lucky, that at around 14-15 weeks the intensity began to fade-I was still sick but the weight loss and extreme nausea began to fade slowly. Some women who have this have it the entire pregnancy. (Here is what 9 months of hyperemesis is like.) Because of that (the body can only starve so long) these women are sometimes hospitalized throughout, have a torn esophagus from throwing up so much, feeding tubes and constant IV's with a concoction of medications dripping into them.
I switched to a midwife the second pregnancy and she knew my history and she was incredibly attentive from the start. Although I tested positive often from ketones in my 2nd and 3rd pregnancies in those first weeks, I never needed to be hospitalized OR needed IV's. (One of the crappiest things about hyperemesis is that once you get to a certain dehydration level it is super hard to recover from it-and every symptom just gets worse and worse-it is a vicious cycle-it needs to be diagnosed early on.) It was hell though. It was so hard to care for my younger children and by pure will and an extremely helpful and understanding husband we made it through 10 weeks-those 10 weeks feel like 10 years when you have hyperemesis. I think with my 2nd and 3rd and 4th babies I kept the weight loss around 10-12 pounds. I have many memories of just laying on the floor while the little one(s) crawled around me-they probably enjoyed it because I was always right there with them, never rushing around or cleaning or cooking. I know I sound crazy-people will ask, "If it was that bad why have more?" Because I have a terrible memory, I have had unrealistic optimism that I won't get it "this time", and crazy crazy baby love. I have also deeply resented this illness and felt like I would NOT let it determine my family size.
With my 5th child, I was lucky in that I really felt the sickness fell into the category of severe morning sickness, not hyperemesis-there was a marked difference and although I felt very sick I could function day to day. I never wanted to eat, but felt better when I did. I was able to make basic meals for my family sometimes, and function-go outside, drive, get dressed every day, put some food into my mouth. I thought I might have built up an "immunity" of sorts to hyperemesis.
I will be honest and tell you that one of the very frustrating things about having hyperemesis is that it is misunderstood. I did NOT have an "eating disorder"-I would have LOVED to eat more than a few hundred calories a day, trust me! It had nothing to do with wanting to gain weight or not-purely biological, not one bit psychological. And yes, I tried everything and anything that ever did anybody a bit of good and nothing helped a bit. When people say things like, "Try eating crackers, or popsicles, or ginger or Gatorade, SeaBands, B6..." or "Oh yeah, I was sick too, but when I ate, or threw up I felt so much better" you just know they do not get it. NOTHING makes you feel better when you have hyperemesis-there is NO food that sounds good, there is NO food that does not make you feel nauseated, there is NO food that does not take incredible will power and work to just chew and swallow...or even look at! (Which makes it so frustrating when you can't keep it down!) You can not even THINK of food without puking or wanting to puke. If you do manage to eat a certain food, once you eat it, you almost never want it again. Even this could be manageable for one or two weeks but any more than that, your body just gets more and more depleted and there are so many side effects because of that.
Here is a chart I found that I think helps explain the difference between morning sickness and hyperemesis.
I called my doctor when I realized that if I didn't I would end up hospitalized again, and she immediately prescribed Zofran. I groaned when she said that because I knew from my third pregnancy that whatever I took made me sicker and I had to stop it right away. The nurse said, "Every pregnancy is different, you have to try this." I thought, "You're telling me!" and what choice did I have? Be hospitalized and given IV's with 5 children at home? I hate taking medication during pregnancy-in fact I don't think I've taken a Tylenol or Advil while pregnant. But this time I was willing to try anything. And it worked-it worked in that it stopped the throwing up-but it didn't make any other symptoms go away. It was still very very hard to put even a small amount of food into my mouth I was so nauseated, I was still very weak and always dehydrated, I was still unable to cook-to look at or think about food. I was on the couch by 10 a.m. (desperately hoping for bedtime to come quickly), and when I went in for my check up I had no ketones-but had lost 10 pounds. I don't even want to think about "what if Zofran didn't work" because it is too scary a thought. Zofran has it's own set of side effects (splitting headaches, constipation, drowsiness) but for me they were nothing compared to the pain I felt with the constant throwing up.
We had decided that we needed to tell the 3 older kids that I was pregnant pretty early on. We hadn't with many of the pregnancies before because of the high chance of loss and that was definitely the right decision. But this time they had to know what was going on-in fact Abbey guessed it because she knew I wasn't right-and really, how could I have hidden the throwing up anyways? They heard it, that's for sure. I don't know what Andrew or Patrick thought. Andrew had said a few times towards the end of the 10 weeks, "Wow Mom you've been sick for a long time!" and then went about doing whatever he was doing.
The first week of mom being sick was a huge adjustment. The whole family pays a price when it comes to hyperemesis. It puts enormous stress on the family. After a hard first week, everyone kicked in as best they could. Jeff was awesome. I can't even write about how incredible he was without crying so I will just say that he worked a full time job every day, and then all evening and weekend long he would come home from work, make dinner, take the kids where they needed to go, straighten and clean up (no, not like I would but everything had to be "good enough"), make sure everyone got to bed. He grocery shopped, planned and made the meals as best he could, made sure the kids were fed. He would check on me and never complained about how hard it was. He drove Abbey to crew practice at 6 a.m. and stayed up late with the older kids every night. That is not to say there were not many many pretty stressful days around here. Toilets still overflowed, kids still needed to be taken places on weekends, life had to go on-even the bare minimum life.
Emotional health? That's another part of the story but one of the common secondary illnesses that goes right along with hyperemesis is depression. The inability to eat and drink and nourish yourself, to care for your family, being in pain and feeling miserable 24/7, unable to go out into the world and function, absolutely takes it tolls after weeks and weeks. The fear of this illness not ending, watching the life you love unfold from the couch while you can't participate is emotionally draining too. There are days when it was so hard to get out of bed-days when I thought, "I can't do this anymore-I can't struggle through every hour feeling so physically sick and miserable every minute for one more long day." But I did-because I had to for the sake of my kids and this beautiful child growing inside of me. And I prayed a A LOT. I prayed that I would have the strength I needed physically, and I prayed at the same time that this baby's heart would still be beating at the next ultrasound. Oh, how I lived for those ultrasounds, as nerve-wracking as they were for me. That beating heart gave me the strength I needed to make it-2 weeks at a time. It meant all of this was worth it.
Here's that ultra-important last paragraph:
I also know I am SO lucky. I know that I could have not responded to the medication and ended up much worse, I know that many hyperemesis patients have this the entire pregnancy and are in incredible pain, away from their families in hospital beds. I know that I am lucky to be pregnant and 18 weeks along and finally I can feel so excited for this new little baby inside of me is sticking around. I know that much worse things can happen in a pregnancy and I am so incredibly grateful to have this child. I know that there are women who take pregnancy for granted and I am NOT one of them. I have had so many friends deal with incredible losses, and friends that have had to struggle with coming to peace with never biologically bearing a child after years of heartbreaking tests and procedures. I have friends who have been and are presently waiting endlessly and hopefully for an adoption referral. And I have had enough hard life experiences with pregnancy loss to never ever take a baby (or even a pregnancy) for granted. I also thought SO much-every day in fact-about moms all over the world who are sick-not sick because they have a wonderful new life growing inside them, but because they have had an awful diagnosis of disease.
But I felt I had to share my story, just so people could understand, and those women who have had, or do have hyperemesis, and the husbands and children who are experiencing the incredible strain of it also, can know that they are not alone.