Imagine a disease that makes your body reject food and water, lose 14% of your body weight, vomit violently up to 40 times a day, dry heave every time you moved and things like the smell of the sun and sound of your husband talking make you sick. Being too weak to lift your head to puke, everything spinning around you and not being able to look at the TV, phone or computer, so dehydrated and malnourished you black out and can’t remember months of your life, so fatigued you can’t even go to the bathroom or shower on your own, your skin so dry it peels, your lips cracking and bleeding, your throat being so dry taking a breath burned, your hair falling out in chunks, your nose burning from vomit and your mind being so foggy you can’t even remember your own name. Now imagine going through all those things while pregnant and what should be one of the most exciting times of your life. Also throw in many people including medical professionals, not knowing what this disease is, how to properly treat it and thinking you are faking, looking for attention or are dramatic.
This is Hyperemesis Gravidarum (HG) and what I had to live with my entire pregnancy.
It’s taken me quite a while to get to the point that I was ready to share my entire story. I’ve gone through nights of tears because I felt I was reliving what I went through, I’ve felt guilty and was afraid of being judged for some of the thoughts I had during my sickest times and can’t remember huge chunks of my pregnancy. I think I’m ready now though and hope my story will help other women and their loved ones get through HG, spread the word about this terrible disease and also help me heal emotionally.
On May 4th, 2011 I started feeling kind of “off”. I was so exhausted I could hardly keep my eyes open, had a migraine that wasn’t going away, my lower back was hurting, had an all over ache and was feeling a tad bit queasy. I thought I was just coming down with the flu but my husband kept saying he had a feeling I was pregnant. He went to the store late that night after work to pick up a pregnancy test. I took it just to make my husband happy and “prove to him” that I wasn’t. To my shock, it was positive! Both Landon and I were beyond excited but still in shock and doubted it, thinking maybe the test was broken. The next day I picked up 5 more tests and every single one of them was positive. It finally started to sink in that I was going to be a mommy! I started day dreaming about if we were having a boy or girl, baby names, decorating, baby clothes, growing a baby bump, getting the “pregnancy glow” and what cravings I would have. Little did I know at the time that those would all be the last things on my mind during my pregnancy.
Since Mother’s Day was just a couple of days away we figured that would be the perfect time to tell our family the exciting news! We made a picture with the pregnancy tests and my due date and put them in a frame that had a quote about grand kids, wrapped them up and gave them to our moms to open at lunch. Our parents and siblings were so happy for us and excited to become grandparents, aunts and uncles for the first time! The joy a new baby brings is priceless.
Up until about 6 weeks along I was feeling pretty good despite some fatigue and a little bit of morning sickness. I was still working full-time, we were in the process of trying to find a house to move into and preparing to volunteer as counselors at Muscular Dystrophy Camp. I was hopeful I’d be one of the lucky few who didn’t experience severe sickness especially since I felt so great. I even was bragging about how I had not even thrown up once and how I knew this was going to be an easy pregnancy.
Then one day during my 6th week along I woke up so sick I couldn’t even make it out of bed without throwing up all over the place. I was hoping this was just a fluke and I’d start feeling better. That day was just awful, I thankfully had the day off work and spent all day going between bed and the bathroom with nonstop dry heaving and vomiting. The next day was no better and my husband ended up taking me to the hospital because along with the vomiting, I knew I was getting dehydrated, was dizzy and light-headed and started having cramping. They did an ultrasound and said baby looked great, then gave me a couple of bags of fluids, some IV Zofran and sent me home with the typical morning sickness tips and a script for oral Zofran.
I was embarrassed that I was so sick and tried to cover it up. I went on with life the best I could and didn’t tell anyone how many times I was throwing up. I honestly just thought I was being a baby “because every pregnant woman gets morning sickness”. I tried just about every pregnancy sickness tip under the sun. First there was the ginger…candied ginger, ginger tea, ginger cookies, ginger ale (which by the way, ginger is AWFUL to throw up!). Then there was the sour candies and “preggie pops”, eating small amounts often, seabands and of course, the favorite…saltine crackers (which might I add also suck to throw up). And the more things I tried and the more I tried to force myself to eat, the worse the nausea got.
The first point I started wondering if something was wrong and I wasnt just having normal sickness was around 7 weeks along. I was driving down a one way road and started feeling very dizzy and light-headed which was starting to become the norm for me multiple times a day. I should have pulled over at that point but kept pushing myself and blacked out for a couple of seconds and opened my eyes to a car honking its horn coming right at me going 65mph on a highway. I swerved as fast as I could and thank God made it safely to the side of the road. This was the first time HG made mine and my baby’s life flash in front of my eyes and this also was the last time I drove for over a year.
I still was not aware that something was wrong and we prepared for my 5th year at MDA camp. This was my favorite week of the year and I was trying so hard to be as excited as I was the past years. The drive up there and the first day were not too bad but the first morning I woke up so nauseous I couldn’t even get out of bed (it probably didn’t help that I was on the top of a bunk bed!). I’m so grateful to have a good friend as my room-mate that helped get my camper ready and take her to breakfast so I could wait until all the girls left the bathroom so I could puke without an audience. I would hear the last girl leave the cabin and I’d cover my mouth and run to the bathroom and vomit until there was nothing left, get myself ready and go to the nurse for my Zofran. I did my best to “suck it up and put on a happy face” that week but it never failed that everyday was the same. Shear exhaustion and nonstop vomiting which led to severe dehydration by the end of the week. But I didn’t tell anyone how bad it really was.
By the next day we got home from camp I was so weak, I could hardly stand on my own. I lost my job because it was impossible for me to work and I spent all day in bed. I eventually brought my pillow in the bathroom and laid on the floor so I could be close to the toilet to throw up. I blacked out yet again and my mom and husband decided it was time to take another trip to the ER. During that visit they asked me to pee in a cup to test and I sat in the bathroom trying for over 20 minutes and absolutely could not. I was too dehydrated and had not gone to the bathroom in over 24 hours. They just gave bags of fluids through an IV, Zofran, Phenergen and IV Benadryl. Not only did it knock me out, but the vomiting stopped for a couple of hours and I was able to eat a little bit. But about 16 hours later I was back to nonstop vomiting and being so weak I could physically only lay there.
We were back in the ER again about 30 hours later for what would begin to be our routine every 24-30 hours for over 2 weeks. It was the same “nausea cocktail” and fluids which would work for a couple of hours. Finally on my 4th hospital visit a Dr. came in with some papers on Hyperemesis Gravidarium. It was the first time I ever heard those words before, had no clue what it meant but was happy to hear I wasn’t just being dramatic and there really was something wrong with me. Although the Dr told me I had HG, he was very cold about it and told me to try the normal morning sickness tricks and come back if I needed more fluids.
When we got home my mom and I started to do research on HG. I had no clue a disease like this existed but I was hopeful it would get better soon and I would never have to deal with any of the treatments we read about. Home Heath Care, home IV’s, a PICC line, Zofran pump, TPN feedings and a feeding tube sounded so scary and I just wanted to feel better and start to enjoy my pregnancy, not have my life surrounded by medicine, medical procedures and the hospital.
I was doing my best to be strong and get through what I thought was the last couple and worst weeks of the sickness, but I was so weak, the constant ER trips and IV’s were getting to me, I was so tired from the throwing up and was literally starving but unable to eat or keep anything down. I was getting to a very dark place and was starting to even forget I was pregnant. The only thing my mind could focus on was keeping myself from passing out. I literally was afraid to go to sleep because I wasn’t sure I would wake up. I was throwing up around 35-40 times a day and the fluids and IV meds from the hospital were not really working well anymore. I was tired physically, emotionally and mentally. I could not keep on trucking through anymore like I was but felt stuck. I was being controlled by HG and little did I know the sickness would not be getting better, but instead worse and I would have to learn to be strong and push myself for me and my baby.
The feelings and thoughts I started to get were not like me. We were so excited and blessed to be having a baby but I was so sick and desperate I just wanted the sickness to end. I’m absolutely heartbroken and ashamed the thoughts even entered my head but I would lay on the bathroom floor and cry and pray God would just make me have a miscarriage. I was too sick to even look ahead to the next day and 9 months seemed like a lifetime to endure this torture. The dehydration, starvation and malnutrition that HG causes is horrific and would make anybody go crazy and cause desperate thoughts.
I was becoming very depressed and it was advised to me by an ER Dr to get counseling. He had told me that depression was causing the sickness and if I got the depression under control the sickness would get better. I was willing to try anything at this point so started seeing a counselor once a week. It was the middle of the summer and it was beyond difficult for me to get out of the house and have somebody drive me 45 minutes to see her, but the Dr told me this is what would “cure” me so I kept pushing myself. After a couple visits, it become physically impossible for me to go anywhere except my hospital visits and she was giving me less than helpful advice which made me feel like I was being dramatic once again. My husband decided I was too sick to continue and I needed to just stay home and sleep.
I was so weak I couldn’t even communicate with anybody who wasn’t sitting right next to me. My mom would call and talk with my OB and midwife every couple of days and explain that this wasn’t getting any better and we needed to do something. At one of my many hospital visits, the Dr asked why I wasn’t on Home Health Care yet and explained the cycle of nausea, dehydration, starvation (the nausea keeps you from eating or drinking which causes dehydration which causes more nausea which makes it impossible to rehydrate and you end up starving and your body shutting down eventually) and said that it was very important that I get better treatment then just the ER visits. My mom talked to my midwife Ramona that night and she said that she would have the office staff get all the papers completed for home health care (HHC). I was very nervous about what that meant exactly but happy that something was being done.
The HHC company did not take new patients over the weekend so I endured another horrible couple days then finally at 11 weeks along I was started as a patient on HHC. A nurse named Michelle came out and opened all the boxes that had been delivered the night before and showed us all the supplies, set up my IV pole and took out my Zofran pump. She first showed my mom and husband how to set up and place the syringes in the Zofran pump then she gave me a shot of Zofran and got ready and explained how the pump sites worked. I am not afraid of needles at all, but the thought of a needle the size of a thumb tack going into my stomach, especially when I was a baby growing in there, made me even more sick than I was and scared the you-know-what out of me. I took a deep breath and kept reminding myself it would help me feel better soon and my mom placed the site. It did sting but was not too bad and I was so happy it was over…at least until it was time to change it next. Then the nurse took out a bag of fluids, flush and the rest of the IV supplies and started an IV then explained to us how to flush it, change the bag, pull it out when it went bad etc. She also gave me a scale, bottle of keatone strips and explained to me how I would call every morning for an assessment of my weight, keatones , how many times I’d thrown up and how much I was able to eat and drink. It was overwhelming but felt great to be able to sleep in my own bed while getting medicine and hydrated.
Within about 12 hours I started to get a horrible, red lump under and around my Zofran pump site. I was told about them but had no clue how painful they were! I had my mom come change my site and put a cold pack on my tummy hoping the bump would feel better. I would end up needing to change my site about every 12-24 hours and always still had a lump. Eventually my stomach and sides were a mess and was covered in awful, red, painful bumps. But the medicine was helping a little and those painful lumps were ok with me if I was vomiting even one less time.
Unfortunately two days after my first home IV was started, I started getting a severe pain in my hand around my IV and my whole arm starting swelling. The IV started infiltrating so we tried to flush it with saline which just made it worse. It was time to pull it which meant I had to go all night without fluids and call my nurse in the morning to come start a new one. About 6 hours without fluids and I was starting to get dehydrated which was causing more nausea. I was back to the nonstop vomiting and those awful dark thoughts. This horrible cycle would become all too familiar for me.
Another nurse named Cahlil who became my “regular nurse” would come out about every 2 days to start a new IV for me. As sad as it sounds I looked forward to having a new IV started because it meant I could finally run some fluids and feel just a little bit better. A good vein was difficult for her to find because I was always so dehydrated and even the 3 bags of lactated ringers a day had not helped me catch up to being fully hydrated.
Within a couple of weeks my veins started blowing and IV’s were infiltrating hours after they were started. I was not able to even infuse a whole bag of fluids before the awful pain and swelling in the IV site would start. I always felt it and would panic. The ONLY way I even could even sit up in bed by myself was when I had fluids and yet again, I would have to go all night with no fluids again because the IV was shot. My nurse starting having a horrible time trying to find ANY vein, even if it was in an uncomfortable place, to start an IV. She would find one then stick me and it would blow. Stick number one was a fail. She got two more tries. We would all hold our breath and pray we would get a good stick. Every once in a while we were lucky and she would get a good stick, but most of the time it was a fail and I have two options, go without fluids or go to the hospital for a bunch of them to dig around and try to get a couple of bags of fluids in then send me home. So many times I was just so weak that I would say I was fine and just try my hardest to drink on my own which of course would just make me more sick. My mom, husband and nurse started to take a stand and if HHC could not get an IV then I would always go to the hospital. I also was fighting with a couple of the nurses every time I needed a new IV because they said I needed to start trying to drink myself rather than rely on the IV fluids. OF COURSE that’s what I wanted and those couple certain nurses just added to my suffering.
At an OB appointment we talked about our options. We knew the IV’s were not going to be an option much longer but were hopeful I was going to get better soon. My midwife and OB were hesitant to start a midline or PICC line due to the risks involved. We disgusted a feeding tube and artificial nutrition but there were risks involved with that too and we were afraid I would just vomit up the feeding tube. They decided to send me to Perinatologist to see if he had any ideas on what the next step should be.
In the mean time we knew I needed to start getting some fluids and nutrition in. I was spilling high levels of keatones and always knew it because I would get hysterical, crying and saying I couldn’t do this any longer and I just wanted to die. We later learned this always meant I was spilling keatones and once those were under control, I could think a little bit more clearly. The only way to get the keatones down though is fluids and nutrition, which at this point was nearly impossible. We decided to try little, tiny sips of Ensure every couple of hours just praying it would stay down. I would take a bolus of Zofran and a Phenergan then my mom would set her alarm for every hour and come down and help me sit up, take a sip and I’d go back to sleep. Some days I was able to get half a can down which was a huge accomplishment!
Finally at 17 weeks I had a high-resolution ultrasound and my appointment with the Perinatologist. We were so hopeful that he would have all the answers and I would start getting better. The ultrasound went great. Baby was growing perfect despite my weight loss and lack of nutrition and he was just beautiful! Next we saw the Dr. We went over my history and explained to him how sick I’ve been. He could see it! I was sitting in front of him barely able to stand on my own, attached to IV fluids, bruises all over my arms and hands, bags under my eyes, greasy hair, very pale but green skin and vomiting. His response was “well you know it’s not too late to terminate the pregnancy. You still have a couple of weeks left. The fetus is not viable at this point.” We were about ready to just walk out of the office at this point. He made me sick and I did not even want to say another word to him. He just showed us pictures of our perfect baby the suggest we kill him. We told him that was not an option and he said to us “well I don’t know what to tell you. I guess you are just going to waste away. Just use a sponge and put little drops of water in your mouth sometimes if you want to continue the pregnancy.” Then he proceeded to compare me a concentration camp victim. No, I was not a concentration camp victim but I was now the victim of poor medical care and “advice” and a victim of the disease. I was stuck being starved and the disease was killing me.
The next morning I called my OB and told him what happened. He apologized and said we would talk about more options at my appointment with him next week. Options?!? What options? It felt like my only option was to waste away and use every once of the little bit of fight I had in me to keep going. At this point I knew I was not going to magically get better like we all were waiting for.
The following week was my anatomy scan and we were finding out if we were having a boy or girl. We were so excited and this is what kept me going that week. Early that morning my nurse came out to start a new IV so I was hydrated before having to go out in the heat. About 2 hours later I unhooked for about 30 seconds to put my shirt on when I hooked it back up, it was not dripping. We flushed it and it was dripping but slow. I let out a sigh of relief. I HAD to at least get one bag of lactated ringers in, I knew my body needed it. On the car ride there it stopped dripping again, I kept flushing it the whole way there and while sitting in the waiting room trying just to get in as much as I could before it blew. I looked around at all the other women waiting. They were all so happy, holding their adorable bellies and smiling. You could feel their excitement and see the glow. I looked awful and the only “glow” I had was from the toilet water splashing in my face and from sweating profusely from vomiting to hard. I was supposed to be so excited. That is the ultrasound everybody waits for and is so excited for! Instead I was worrying about a stupid IV and trying not to throw up. I was so jealous and during that time, hated every single happy pregnant woman.
We were called back and as the ultrasound tech prepared, my IV blew. I was so disappointed, stressed and angry. She put the goo on my belly and started to go over each part and explained it to us. Perfect little arms and legs, fingers and toes, cutest little nose, strong and healthy heartbeat then she says “do you see that right there? It’s a little….BOY!” For those couple of minutes I forgot about the HG and IV and everything else and was just on cloud 9. I was going to have a little boy! I knew he would be a mommy’s boy and daddy would get his little buddy! I just wanted to reach through my belly and hold my sweet Emerson! We then saw my OB and yet again he said lets just keep doing what we have been doing and keep trying the IV’s at home and if they could not get it then to go to the hospital. I was frustrated but still so elated about our great news!
We had a little gender reveal party planned with our families that evening and our plan was to pick out a little outfit and put it in a bag then let somebody pull it out and reveal to everybody if it was going to be pink or blue! Landon and I went to Target and he pushed me in a wheelchair to the baby section. This was the first time I had been in a store in about 10 weeks. I loved looking at all the baby things and we picked out the cutest little outfit that we also planned to bring him home from the hospital in. Seeing how sweet and tiny it was reminded me of why I kept fighting and that soon, my misery would be over and I would have the best little gift. That night our families got together to find out the big news. If their guess that it was a girl; they wore pink, if it was a boy; they wore blue. The guesses were about half and half. My father-in-law pulled out the little onesie with elephants playing football, red and brown vest and brown pants and everyone cheered! That day was so joyous despite the IV nightmare that started that morning.
A couple of days later I needed another IV, my nurse came out and got her 3 sticks which were all fails, so it was time once again to take our hospital trip for fluids. We continued this for a couple of weeks, visiting the hospital multiple times when home IV’s were not possible. One of the visits, an ER doctor took one look at me and said I needed a PICC line. We all agreed with him and after this I was deteremened to get one. It was what both my baby and I needed. The risks from the HG were outweighing the risks from the PICC line at this point, and had been for a long time. It was very past due.
The next day was Landon’s birthday. I was having a hard day and was beyond fatigued and sick but did not want to ruin his day. I called my midwife and the tears just started pouring and I told her I was done with all this and I needed a PICC line. She agreed with me and said she would get on it this week and give me a call back about when it would be placed. I finally felt like I could breathe! Finally something I knew was going to help me improve, even a little bit. That night we went out to dinner and I put on my happy face for my husband and tried to pick at some food and not throw up. I was pressured from the other guests to just eat “because the baby needs it”. This along with other comments were the norm for me now. Even some family members did not care to understand. As soon as we got out to the car I threw up the couple bites that I ate. I knew I should not have eaten them but hated feeling like I was looked down on for starving myself and my baby and being a bad mom.
I was very nervous as the day came closer for my PICC line to be placed. The wonderful ladies from my online HG were there offering their support, advice and experiences. They are such a wonderful group of ladies and really helped ease my fear. It typically is a simple procedure that takes about 15-20 minutes. It is done in a sterile, surgical room by a nurse specially trained to place lines. You lay on a surgical table and the nurse uses an ultrasound machine to find a vein in your upper arm, numbs it, then uses a special tool into the vein and threads the tubing in and around your shoulder up to just above your heart. It’s typically an easy, quick and fairly pain-free procedure.
On September 23 (I only remember the exact day because it was written on a sticker that was on my arm every time I had a dressing change done) my mom and husband and I went to the hospital and checked into the outpatient surgery center. I was so hopeful and my nerves were settled and I was confident. The nurses were so kind and explained everything and made sure I was comfortable. The procedure which was supposed to be under half an hour and only one major stick, took four sticks and THREE HOURS. My veins would collapse and the line kept trying to go into my neck rather than curve around like it was supposed to. It was nerve-wracking and fairly painful. I was so used to the disappointment of not being able to get an IV started, but I had never even heard of them not being able to get a PICC line started. I was so afraid it was not going to happen and I would be yet again left to suffer. I had to try to lay still the entire three hours but I was in pain and very nauseous, not to mention my legs kept shaking due to restless leg syndrome. The nurse decided to try one last time and by mistake I gagged a little then sneezed and the line went right in! Praise God! My arm was very bruised and I was in quite a bit of pain but it was in! What I was waiting for was finally there and now I KNEW I had to be on the road to getting even a tad bit better.
The ride home was awful, all I did was throw up bile and could not stop shaking and my arm hurt so horribly. I was starving and so thirsty and beyond week. That was one of the worst days that I can remember. After we got home a nurse from HHC came over and showed us how to hook everything up and how to flush it and explained everything. I was hooked up to fluids and my Zofran pump (which meant no more painful belly sites also!) and as happy as a person can be in that situation. My arm was hurting very bad still though so my midwife called me in some pain medication to help then I crashed that night after such a long, draining day.
Within just a couple of days I already started to feel a little bit of an improvement. I had a few hours a day that the nausea was something I could manage and I could sit up and talk and watch TV and spend time with my husband and family without everything spinning around me and vomiting every couple of minutes. I also was able to start eating a little bit sometimes. I tried just about every food and drink that sounded good and the ONLY things that I was able to get to stay down were soft pretzels and cranberry juice. It was only little nibbles and sips but it was something! I lived off of both of these and although it got old, I was so grateful to be able to eat or drink anything. Some days I only threw up three-four times and other days it was as much as twenty. I had good days and bad days but I still felt so much better than I did before. Throughout my pregnancy, I did not have one day without nausea or vomiting though.
Thanksgiving was very difficult as I was so hungry and wanted to eat badly, but was only able to pick at little things hoping it would stay down. Yet again comments from family was made about how Emerson needed me to eat and I needed to just suck it up and force myself to shove a couple bites down. I felt so pressured and was upset that some of the people who should have cared about me most still did not understand nor did they care to even learn about the disease. I sadly was getting used to it though.
December 4th was mine and Landon’s 1st wedding anniversary. We had a nice little day getting a couples massage and went out to dinner then decorated our Christmas tree. I only threw up a couple of times and felt fairly well that day. Then the 6th was my 21st birthday and I was stuck in bed all day long. I couldn’t even stand up without vomiting. I felt like I had the worst hangover ever on my 21st birthday yet of course couldn’t drink anything….not even water!
Christmas came and went and I was finally 37 weeks and ready for baby to come! I was having some contractions at this point and prayed he would come any day. The last couple weeks of HG are the hardest because you can see the light at the end but are still suffering. It’s more than just the normal feeling of being “over” pregnancy and wanting your baby. I was tired of people telling me to be patient because they had no clue how hungry and thirsty I was and the hell I had been living. I just wanted to eat again and be myself and of course hold and kiss my sweet baby boy.
I’m saving my birth story for another post, but due to my body starting to reject my PICC line, finally at 39 weeks my labor was augmented and 44 hours later, on January 13 Emerson Wayne was born and the nausea disappeared like magic! I was chugging my first glass of ice water (first glass of water in months!) and eating super, steak nachos within 45 minutes after he was born. My PICC line was removed the next day which was yet another cause for celebration.
Even though the nausea went away, I was still left with so many of the after effects of HG and still, almost 8 months later am suffering from them. That also will be another blog post though. ;)
Although HG was one of the most horrible, awful things I’ve ever gone through in my life, I’d do it all over again for Emerson. He was worth it all and I’m so proud to say I kicked Hyperemesis in the butt!
Weeks went by without taking a picture because during this time I was very sick. Pictures start again at 22 weeks.
I’m so glad we got maternity pictures done and so thankful for my sister-in-law who helped me get ready and feel pretty for the first time in months!
Some of the very few pictures of what I actually looked like about 99% of the time without having somebody help me get ready.