Saturday, October 25, 2014

Brief overview of my months with hyperemsis gravidarum.

Much like my miscarriage, I thought I'd be able to write about my hyperemesis gravidarum (extreme sickness that is way beyond morning sickness) experience to inform the masses about something that can happen to women. Much like my miscarriage, I'm realizing that it was actually a pretty traumatic event and is extremely hard to put how I feel into words. It's another one of those things that is absolutely impossible to fully understand unless you've lived through it. I tell people, 'Oh ya, this pregnancy has made me really sick,' when in my head I'm actually thinking, 'This pregnancy brought me to the point where I literally thought I may die, I happily wished for a miscarriage, and abortion crossed my mind every five seconds because it was just too much. Too much puking, too much weight loss, too much of an affect on my marriage, too much of a disruption for my life.'

I'm happy to say that I'm past all the dark stuff, and am finally able to enjoy this pregnancy quite a bit. It's been exciting to see a baby bump start to form, and absolutely pop this past few weeks! Things are starting to become a little more normal, and are falling into place. Plus, I can now say I'm like royalty because the princess and I have hyperemesis gravidarum in common. I'll write a post next about where I'm at now as far as how I feel and talk all about how I'm done sticking a needle in my leg every other day for my meds, but for now this is about how I got to this point.

June 23
Postive pregnancy tests! Woohoo!

We weren't trying to get pregnant, but when you follow the Natural Family Planning method without hormonal birth control and your body is screaming MAKE A BABY, your brain sometimes forgets to be logical. We absolutely knew there was a chance of getting pregnant, and that was a risk we were ok taking because getting pregnant wasn't the worst thing in the world. In the week leading up to the pregnancy test I was still working at a hole in the wall restaurant and always seemed to feel queasy. I had just started (I only worked there like three weeks before I quit!) and just assumed it was because I wasn't used to smelling such strong foods all the time. I was also really craving fake nacho cheese sauce, which is something I don't think I've ever had as an adult, and luckily we had that at work so I ate so much cheese and chips! And massive amounts of jalepenos.

I was having what felt like period cramps about eight days before my period and thought it was strange, but didn't pay too much attention to it because I usually get cramps a few days before. Then when my period didn't come Saturday night (TMI (but isn't this whole post?!) but my period always starts at like 2 or 3 in the morning and I get woken up by really bad cramps) I woke up Sunday morning and casually thought, 'Hmm, I'm pretty sure I'm pregnant. I should probably take a test.' So I took a test while Vince was on a bike ride and sure enough, a pink line showed up right away and my brain went. 'FUCK. FUCK. WHAT?! Two lines means negative, right?'

Not believing the test because it was a cheap one I bought online back when we were trying to get pregnant, I headed to Target for a 'real' test. With shaking hands and a racing heart I bought it and headed home. Vince was there when I got back and he asked how I was, and I exasperatedly said, 'Pretty sure I'm pregnant so I bought a test.' He laughed and thought I was crazy until five seconds later I walked out of the bathroom with an extremely positive test, threw it at him, and started sobbing. I thought he was going to be so mad because we decided to stop trying a few months earlier so that I wouldn't be due in the middle of the semester. Luckily he was WAY excited about it, calmed me down and convinced me that this was a happy time and that I should stop crying. Then he said, 'Best birthday present ever!' because his birthday was the day before.

In the days that followed, my boobs became extremely sore and painful. I couldn't wear a sports bra because the pressure was too much, and even Vince resting his hand on them made me want to cry. I started to feel pretty nauseous and was having aversions to a lot of food as well.

June 30 (5 weeks pregnant)
I woke up to get ready to go to my job at the hospital (I work in a hospitality house, like a Ronald McDonald house) and felt SICK. Like really really sick - I was sweaty, had a racing heart, and was pretty sure I was going to throw up. I thought it was way too early for morning sickness and just assumed I was hungry, so I got up to get food. I ended up dry heaving instead, then laying on the couch trying to convince myself to eat. Knowing I had to work, I managed to get myself dressed, packed a lunch, and drove to work. On the way I had to stop in an alley to throw up, but eventually made it. I explained to my boss when I got there that I was pregnant and really sick, but that I thought I could work my six hour shift. The first hour I laid on a recliner in the staff apartment (we stay overnight when working the night shift) and tried to eat a little bit of a gluten free bagel with butter. I tried to get up to go to the office because I knew I'd have a check in soon and realized there was no way I was going to be able to work the rest of my shift. I called my boss who turned around from heading out of town, and she came to work for me.

I went home and slept, with dry heaving interrupting it, and didn't get off my couch for four days, except to go to the bathroom.

4 days later
I had my first OB appointment and realized there was no way I could sit up long enough to go. Laying down my nausea was manageable, but as soon as I sat up I felt terrible. The day before I remembered that I had anti-nausea medication somewhere that was leftover from my miscarriage last year (painkillers make me sick!) so I tore through the bathroom to find them. I knew my friend had taken zofran when she was pregnant so I researched the safe dose and took one and it helped quite a bit. I still felt nauseous, but didn't have the feeling that I was actually going to throw up.

The morning of my OB appt I took one so that I could go. I explained to my doctor how sick I was, and that I had already lost 7 pounds. The day after I found out I was pregnant I had an appointment with my primary physician to get a referral and I weighted 149 pounds, but just a week and a half later I was down to 142 pounds. My doc didn't seem concerned and explained that he would like to try a different medication first, but if those meds didn't work he'd prescribe me zofran. He originally prescribed a suppository phenergen, but at $16/pill that I was supposed to shove up my butt every four hours? Ya, no way. So he switched it to oral phenergen that immediately put me to sleep as soon as I took one. It's nice to sleep through the nausea, but doesn't lead to a functioning life! So zofran it was.

I started taking 4mg of zofran every four hours, around the clock. After some research online and a recommendation from a friend, I also started taking a combination of Unisom and Vitamin B6 at night, probiotics, and phenergen at night to help me sleep. The Unisom/B6 made a HUGE difference for the next day, but I was still feeling sick all the time. In addition to prescription meds, I also tried every natural remedy you could think of - ginger, citrus, ice, sea bands, small bland meals, peppermint, popsicles, crackers…everything. And nothing was working, I was still feeling sicker.

July 4-6 (about 6 weeks pregnant)
I was scheduled to work over 50 hours for the weekend with multiple long shifts (10-24 hours), and somehow made it! I spent a lot of time in the staff apartment in the recliner snacking and trying to stay on top of things. I was still feeling really sick, but thought that I was able to manage it with the zofram pills and constant snacking.

July 9 (about 6 1/2 weeks)
Our first ultrasound!

At the time I was like, "OH MY GOODNESS, that's a baby!" Now I realize how teeny tiny it really is! 
They say that it's really hard to be excited about a pregnancy after miscarriage, and it's totally true. You don't want to get too excited or attached because you know you don't live in fairytale land where everything will end up ok. You can try to convince yourself it's different this time, but the hesitant feeling never goes away. So to see a little beating heart was AMAZING. I can't even explain the relief, even if it was followed by the though of, 'Well, that doesn't mean it'll be beating tomorrow.'

July 7-August 16
That's a long time span, but every day was basically the same. I laid on my couch, didn't eat anything, and just felt sick. I never left unless it was to go to the doctor or the hospital. Over this time I lost 30 pounds because I wasn't able to eat more than half a peach most days. I wasn't able to drink a single sip of water, and was drinking about 4oz of liquid a day between watered down gatorade, sparkling mineral water, and chocolate Ensure drinks. I was already thin to begin with, and I wish I was kidding when I say I looked like a Holocaust victim. My knees looked huge because my thighs and calves lost all their muscle and my elbows were the same way, you could see every rib on my chest and my back, you could see every knob of my spine, my fingers got skinny enough that I couldn't (and still can't) wear my wedding ring because as soon as I lowered my hand it slipped right off, my shoes wouldn't stay on properly because I couldn't tighten them enough on my feet…I was skinny. Since I didn't have muscle to hold myself up, I would walk almost completely hunched over and bent at my waist. Now I understand the nursing diagnosis of 'disturbed body image' because I hated looking in the mirror and it scared me to realize how thin I was. If I had a clear picture of myself, I'd show you! These pictures were from when I was about 12 weeks and texting my mom a picture of my 'baby bump'. At this point I had my zofran pump, was feeling a bit better, and had gained back ~7 pounds. So picture me 7 pounds lighter without having eaten for the previous three weeks...the pictures look distorted because I'm so thin!

I had a couple visits from friends and family and each time I could see the look of sadness and shock in their eyes because I looked so unhealthy. To go from a body that was riding 20 miles on a mountain bike to not even be able to walk 10 feet to my bathroom in such a short time frame was unimaginable. I could tell Vince was very upset by it, but I wasn't in a position where I could listen to his 'problems'. He's told me many times how difficult it was for him to go to work and come home later to find me in the exact same position he left me in with the food he left still sitting there. I can't imagine the amount of frustration he must have felt to see me like that and have to take care of me after a long day at work. He was AMAZING throughout everything though and made sure I was taken care of.

On July 12th I realized I was extremely dehydrated and was only going to the bathroom once every 24 hours, and even then it was a very small amount. So off to the ER we went, and I ended up getting admitted for a day and a half.

I managed to eat about three bites of potatoes and 1 piece of asparagus, which made my pee smell so bad I threw up.
I was admitted to the labor and delivery floor and my nurses were amazing, but nothing they gave me helped. I got bag after bag of IV fluids, but still wasn't able to eat and felt nauseous the entire time. The nurses all told me that when someone is admitted for dehydration they always leave feeling better, so I was hopeful! But sadly left feeling even worse. To top it off, I had a couple bites of bacon the morning of my discharge that the hospital brought to my room and though I got a gluten-free tray, it was somehow contaminated with gluten and I had terrible diarrhea all that day. So much for the IV fluids!

I didn't feel better, and ended up in the ER again just four days later, on my birthday no less! I don't actually remember much of that day, and still forget that I even had a birthday. I couldn't answer any calls or texts I got and was just feeling so terrible that day. Luckily I didn't have to be admitted again.

When I was 9 weeks pregnant, I had had enough. After some research online (all done on my phone because the laptop was too much) that was interrupted by extreme headaches and nausea I came across a hyperemesis discussion board and realized there were many other women like me. After reading some of their stories and realizing that I had lost WAY more weight than a lot of them, and that there doctors had them in the hospital with PICC lines and NG feeding tubes, I realized that my condition was more serious than my doctor realized. Hyperemesis gravidarum only happens in 0.5-2% of pregnancies, so there is a good chance he hadn't actually treated someone like me! So after doing research, I realized that at the minimum, I needed a zofran pump. I called his office and demanded that he do something because I had lost 30 pounds, was not functional, and had not been eating or drinking from weeks. I said I would like a zofran pump, and I would like it now. He obliged, mostly because I think he and his staff were sick of me calling, and he put in an order for a home health agency called Alere that would set me up. That same day I got a call from a nurse saying they could send someone out the next night to bring me the pump and teach me how to use it.

The next night I was so excited for the nurse to come to my house but also nervous. I knew needles would be involved, and even though I'm a nursing student and am used to needles now, I don't like getting poked! The teaching nurse brought along another nurse who was training, and they were both wonderful. They dealt with Roxanne licking them and begging for some love, and sat in my cramped living room to give me and Vince the lowdown.


The night I got the pump.
This is the quick and dirty explanation of the pump: it is a continuous infusion of anti-emetics (Zofran) directly into a site that the catheter is placed. Most people have it placed in their stomach, but I was too thin and didn't have enough/any fat to pinch. Instead I placed it in the side of my legs. The catheter (which is about 1/2 inch) was placed in my leg by a needle, and then the needle was taken out leaving the catheter. I hooked up tubing that goes from the syringe on the pump to the site on my leg. I had to switch the site every 1-2 days, depending on how the site looks and feels. Zofran is really toxic to the skin and causes large red welts, swelling and bruising.

This was after the first week of using the pump - my left leg and my right leg. I'll let you imagine what they look like now, and I had it for 12 weeks! 

This it was it looked like after I had already had the site on my other leg for two days. 
I had a really high infusion rate, so my site started to hurt pretty quickly and I had to change it frequently at times. Because I had a high infusion rate, I had to change the syringe every 10 or so hours, often times in the middle of the night. The syringes of medication, site equipment, and batteries were sent to me every Tuesday which was really handy! Part of the process is that I had to call Alere every day to tell them my weight, how much I had eaten/drank, how many times I thrown up/dry-heaved, and if I had any ketones in my urine, which I would test every day.
My supplies for a week.
The pump was/is honestly life saver and I'm so glad I have insurance that covers the $4,000/week it costs to have it. (And I had it for 12 weeks. Yes, my insurance has paid $48,000 for just my zofran pump!) About a week after starting the pump I started feeling a lot better, but was still incredibly weak. Going to the bathroom still exhausted me and would spike my heart rate so I would feel really nauseous again.

One of the first things I was able to eat. I would add sugar to it so I would at least be getting some calories from it!
Even though I wasn't feeling as nauseous with the pump, I still wasn't able to eat or drink so when I started feeling dehydrated again a few days after getting the pump, I called my doctor and asked if there was anything else I could do instead of going to the ER. I was told there was no other option. My insurance covered my visits, but I had to pay a $200 deductible, so that added up really quickly! Vince recommended going to see our friend who is a naturopath who does nutrition IVs, so I started seeing her a couple times a week instead of going to the ER. Way cheaper, way easier, and she was able to give me a vitamin infused beg with a bunch of extra goodies like vitamins and minerals that you don't get at the hospital. It was extremely hard to get up and go there, but so worth it! (Her name is Dr. Amber Belt and she works at Flagstaff Clinic of Naturopathic Medicine. She's great for things besides IVs, too!) In addition to my pump, this was a true lifesaver!

Vince playing games on his phone while I dry heaved through my IV infusion.
During this time, I was unable to shower for about three weeks except one shower where I sat on the ground and asked Vince to wash my hair because it had turned into a big knot. After tears and frustration from both of us, we realized it wasn't something that could be undone. So I did nothing except let it get worse.


This was about a week before I cut it, so it got even worse!
After I got my pump and started feeling a bit better I scheduled an appointment to get my haircut. I was super embarrassed about it and explained it to the hairdresser and luckily she was so nice about it! She explained that she could try and get the knot out, but it would take many hours. I was definitely not going to sit through that, so I told her to chop it off! I ended up with an awesome haircut. (The angled style didn't last long though...I chopped it so it's even. I'm just not edgy enough for it!)

Skinny collar bones! This was after about 10 pounds of weight gain.
Within a couple weeks of getting my pump, I was able to take short walks. I would start with simple things, like walking around the block with Vince and Roxi (less than 1/4 of a mile) and would feel so tired and sick after, but knew I had to do it in order to progress. Vince's dad and his wife came out for the weekend on August 15th and we took a drive up to Snowbowl. We walked around a bit in the woods and I got SO tired and felt so sick, but it was really nice to get out of the house for the first time other than going to the doctor! We also went to dinner (I only ate small amounts and had leftovers) and went to The Wine Loft and played a card game.

At some point in all of this I had contacted Beyond Morning Sickness, a supportive group of people who are AMAZING! They gave me great information about what kind of treatment to ask my doctors about, send me a few books about hyperemesis, and other HG survivors frequently (and still do) sent me little postcards wishing me well. I am so thankful I had support from them, even though I wasn't really able to respond to anyone from lack of energy.

12 week ultrasound. So much bigger than the 6 week one! And Roxi was and still is my valiant guard dog. She rarely left my side and if she did, it was to bark at the FedEx guy.

Around 14 weeks into my pregnancy I was able to go back to work after not working since I was about 6 weeks.
This leads me to the beginning of school and where I am now! I'll cover that next. I feel like this post is such a brief overview of everything that has happened, but I honestly don't remember a lot of it. I was sleeping for 18 hours a day, literally did not leave my house for almost two months except to go to the doctor/hospital, I wasn't able to fall asleep at night because I was so nauseous until the sun started to rise, and then I'd sleep all day. I barely spoke to Vince, I never saw the sun, and all the days blur together.

When I write everything out it seems so simple and like a small time in my life, but I missed out on SO much. I didn't even really wrap my head around the fact that I was pregnant until I was about 16 weeks along, and even then it was still a new thing. Around 19 weeks is when I really thinking I was pregnant and was getting excited about it. I couldn't take weekly photos like I imagined I would, I didn't do a surprise announcement for family and friends like I wanted, and I wasn't able to go through the fun yet anxious phase of early pregnancy where everything was so new and exciting. My life was stolen for me for months and it sucked. Fortunately I am so much better (SO SO much!) and anticipate staying that way! I have now officially been off the pump for one full week which seems like an eternity. Here's the most recent belly shot at 21.4 weeks. I've gained back 21 pounds of the 30 I lost!
18 week ultrasound

8 comments:

  1. I am -so- glad that you are feeling much better now! What an ordeal. I can't begin to imagine how utterly rubbish it must've been for you. It's great to hear that you are finally able to start enjoying your pregnancy and I must say, you are rockin' that baby bump!

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    1. I am so glad as well! Thank you!! :)

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  2. Jesus Christ on a bicycle, you are a champion. That sounds so terrible. At least you'll get a cute kid and a cute hair cut out of the whole shitstorm.

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    1. Yes, it'll definitely be worth it in the end!

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  3. Dont know if my comment went through or not but you are a TROOPER! so glad you are feeling and looking better ♡

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  4. That hair knot! I never saw it, looks so painful!
    I'm still so sad you had to go through any of it but so happy to get to do this together, especially now that you're doing better!!!!

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    1. It surprisingly wasn't painful! It was just...there haha It hurt when Vince tried to wash it, but he tried for a whole 3 seconds before we realized it was a lost cause.

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