I’m part of a Facebook group for moms with Hyperemesis Gravidarum, created by the HelpHER foundation. One mom currently in the middle of her worst weeks just got admitted to the hospital for the first time, and asked for advice. I hadn’t known what hospitals stays were like, either, before my lovely friend HG showed up. So here are some of the things I learned during my times in the hospital with HG.
A good nurse is your advocate, friend, holder-of-hair-while-you-puke. If you’re lucky, your hospital will put you up in labor & delivery instead of leaving you in a ward that may or may not have infectious people (your immune system has basically given up, so you might get every single cough and cold and flu you encounter while pregnant with HG). Labor & delivery nurses are not used to taking care of such “needy” patients, but they are used to frequently checking on their mothers & babies, pushing for breastfeeding every few hours and the like. This will help you stay on schedule for your meds (because when you were supposed to get your Zofran two hours ago, but the nurse still hasn’t made time to come give it to you…). Depending on your hospital, they may even be much less busy than nurses on other floors. During one of my hospital stays a super kind, lovely nurse brushed out my hair for me, complimented me on my Beauty & the Beast socks, and spent time talking to me about her husband. Busy nurses can’t always give you their time and attention like that, even if they want to.
Which brings me to: your nurses might be very busy. They have a lot going on, and while the great majority of them really care and took up this profession because they want to help people–sometimes they are distracted. Sometimes that distraction can lead to mistakes. If you can, watch them when they are pushing your meds. Ask questions. Do NOT be afraid to ask them to push a medication slowly, and/or to dilute it in saline if possible.
Zofran, when pushed too quickly, hits your system in a very overwhelming way (that strangely enough makes you want to puke, which is exactly what the Zofran is supposed to be preventing!). Ask your nurse to push it slowly.
Benedryl can feel very nice when it is first administered (but don’t get up to go to the bathroom or anything for about ten minutes, because you might be woozy and likely to fall). Benedryl is also super caustic to your veins. Ask that it be diluted in saline and pushed slowly.
You might be on several IV-push meds, a couple bags of continuous meds (like antibiotics for a PICC-line infection), and TPN. Make sure your nurses are doing a saline push between each med, and/or pausing your TPN/antibiotics/vitamin bags when they push your meds. Some of these meds, while fine together in your system, can react to each other in the IV line. That will likely cause pain and complications, and worst of all you might miss your dose, because they will be scared to give you more after pulling out the reactive part of the line. This happened to me once and the hours until my next doses were not pleasant.
Potassium is commonly given to HG moms, because all the vomiting depletes our levels so much. IF IT HURTS when they start running the potassium, ask them to set it at a slower infusion rate. One L&D nurse set me up with a potassium drip that was much too fast, and it hurt SO MUCH. I don’t blame her–she wasn’t used to having to give potassium to her patients. But don’t be afraid to hit that call button if there is pain.
DO NOT HESITATE to hit that call button. Be as kind and polite and virtuous as you can when talking directly to your nurse (if you can manage any of that while you’re so sick, of course), but don’t hesitate to hit that call button if you need something. That is what they are there for. You will need to call them to empty your urine catch after every time you pee, because they are tracking how much is going through your system. You will need to call them after (or during) every time you vomit, because they need to be aware of the times and durations of this to put in their notes. It will help your doctor treat you more effectively. Trust me. Do not be ashamed to call often. Do not clean up your own vomit–they also need to see the consistency/color and whether there is blood in it.
If you are sharing a room with someone, that patient might be getting regular meals. Meal-time at the hospital absolutely sucks when you have HG. Your nose is hypersensitive, and the smell of the food will make you vomit. You can apologize to your roommate if you like, but DON’T feel bad for throwing up while they are eating. It is not your fault, and frankly every hospital should let HG women have their own room. When light, sound, and smells can keep triggering intense and prolonged vomiting sessions–we deserve our own space with total control over the level of light, sound, and smells. This is another time it is nice to be in labor & delivery, because most labor rooms are singles. Your hospital might have a policy about not putting anyone less than 20 weeks in labor & delivery. One of mine did, and it sucked. The first twenty weeks of HG are usually the hardest, and the most likely to have you dealing with hospital stays.
Feeding tubes suck, and insertion is a real pain when you are vomiting all the time. If you trust your doctor, though, try not to fight it too much. The feeding tube liquid they fed me did not make me vomit like eating real food would. Swallow repeatedly during insertion to help the tube go down. Get a nice nurse to help you tape the end of the tube to your cheek, and tuck it behind your ear. It will dangle/move less and that will tickle your nose a lot less. Ask for the smallest french tube. You do not need anything bigger than that, and they are much less irritating to your throat than the big tubes they use to empty people’s stomachs.
If you need a midline or PICC line, don’t be scared. They use local anesthetic during insertion, and it didn’t hurt for me at all. It was a quick procedure with a competent doctor, and I was pleasantly surprised. The beauty of being able to get IV fluids and meds (and then TPN) 24/7, even at home, was amazing. Listen carefully when your home health nurses explain and show you how everything works. Have a spouse and/or buddy or two there for the explanation, so that everyone is getting the same education. When you are too weak to push your own meds or prep your own new TPN line or run your own fluids, you will need someone else to know what proper sanitation procedures to follow. Once a week, when they change the dressing on your PICC line site, make sure that you are both wearing face masks. Breathing bacteria onto that exposed site is not a good idea. IF YOUR LINE GETS INFECTED, don’t blame yourself. The sugars and nutrients in TPN are a magnet for bacteria, and often there is nothing you could have done to prevent it. But please go back in to the hospital as soon as you notice any sign of fever, chills, pus, redness at the site, etc.
You ARE allowed to tell the phlebotomists drawing your blood what works best for you. I have small veins that like to roll out of the way, so butterfly needles are best for me. You might have sore veins in some places, and you are allowed to ask them to search elsewhere for a good place to stick you. The best phlebotomists will do all this automatically, but they are also busy and distracted, so don’t be afraid to comment if you have preferences. It is so very unfair to be as sick as you are and then get a phlebotomist who can’t find a vein and likes to move the needle around while it is inserted (bad practice!). I had a fabulous phlebotomist once, though, who took his time drawing the blood for my infection cultures (they need to take blood from multiple sites for these–don’t be alarmed). He talked to me the whole time about graphic novels and superhero movies, and was so gentle I hardly felt anything.
IF YOU CAN EAT OR DRINK ANYTHING, maybe because you’re having a good day, or because the steroids are finally kicking in, do not be afraid to request exactly what you want. Cravings during HG are your body’s way of telling you what nutrients it needs. You want a breakfast that is composed of bacon, sausage patties, and yogurt (but not eggs, because the smell sets you off)? Request it. You can often call the kitchen directly to change your food order or request food items outside of normal meal hours (but usually not during the night, as the kitchen does close). Your nurse’s station will probably be equipped with ice cream and popsicles, though, so don’t hesitate to ask your nurses for it if you feel like a midnight snack. Any food at all is good when you have HG.
Brag to the dietician who comes to see you, if you have one helping with your case. If you can, write down the types and amounts of food you are able to keep down each day. This helped me prove that I did not need the feeding tube anymore (after several days of the IV steroids) and it convinced my doctor to have them order it taken out. Being free of that feeding tube was one of the best feelings ever. I earned it with every spoonful of yogurt.
Don’t be scared if they can’t find the heartbeat right away when they do a daily doppler (IF they are doing these…sometimes you are not far enough along for doppler readings). Your little one is a survivor, often absolutely thriving even as your own body is wasting away. Some days it’s just in a strange position and the nurse might not have much experience finding the heartbeat of such a young little one (because finding the heartbeat when your uterus is the size of a beachball is very different from finding it during your first or second trimester!). Let them call in a colleague to help look, but don’t stress yourself out until your DOCTOR tells you that something is wrong. If they need to order an ultrasound to check that everything is okay, they will do so. The best thing you can do for your little one is to just focus on your own health. You are the one in danger during the bad times with HG. You are the one who needs treatment and attention and help. Staying alive is your goal, and I promise it will be directly benefiting your baby, since it will likely be too young during the bad weeks of HG to survive outside of your womb yet.
Don’t be offended if they send a social worker/psychologist to come see you. Be honest with them, but also try to get a feel for whether they believe that HG is caused by psychological imbalances. There are sadly some very backwards practitioners out there who still believe that women with HG are MAKING THEMSELVES SICK because they don’t want the pregnancy/baby or whatever other nonsense. In your worst weeks, you likely will not want to be pregnant. You might wish for a spontaneous miscarriage. You might consider terminating the pregnancy. I won’t ever judge you for that. HG is horrible, and you have every right to consider your own health, mental and physical. But be clear with that psychologist: regardless of any past history of depression or anything else, HG is the CAUSE of depression and PTSD during pregnancy. Not CAUSED BY them. This is a very important distinction that I wish was universally known. My talk with a psychologist during one of my hospital stays was, quite frankly, useless and a waste of my small reserves of energy. I had a fabulously supportive husband, we had planned and wanted this pregnancy more than anything. I have a history of depression, sure, but I know myself well enough to know that when I was depressed with HG it was because of the debilitating, restricting illness, not because of my normal thyroid issues that cause depression. Trust yourself. Do not let them tell you that you are crazy. Do not let them admit you to a mental hospital–you will not get the care you and your baby need at a place like that. If ANYONE suggests to you that you have made yourself sick and the HG is all in your head…use up every ounce of your available energy to disabuse them of this notion. And then switch doctors or hospitals or whatever you have to do to find a medical professional who takes their job seriously and won’t write you off.
Finally, my most important piece of advice. You will be tired. You will be vomiting. You will be weak and sad and feeling hopeless and abandoned and neglected. You will not think that you have the energy to do ANYTHING. But there is one thing you need to do, above all others. BE YOUR OWN ADVOCATE. I’m serious. Too many health professionals know nothing about HG, and will often deny you access to treatments that can help keep you alive. FIGHT IT. FIGHT THEM. I promise this is the most effective use of any bit of energy you are able to muster. Get the nurses on your side, if you can. Have your spouse or parents or friends sit in your appointments or your hospital room to second your complaints and put more pressure on your medical team. Do whatever you have to do to educate yourself about correct dosages, medications that can be mixed, treatments that have worked with HG moms in the past. If you are not doing this research yourself, do you honestly expect your doctor to be doing it? Direct them to the resources on the HelpHER website. Go on internet forums when you can look at your phone or laptop without vomiting. Listen to other people’s stories to get ideas for treatments/medications to try. Do not give up. Do not become complacent, or trust that your doctor must know best because they have all the medical training. They only see 1% of pregnant women with HG, if that. An OB in practice for 30 years can go the entire 30 years without seeing anyone with HG so bad that they need a PICC line. My first OB was like that. I would have died if I’d stayed under his care. Seriously. If nothing else sticks, please please please, BE YOUR OWN ADVOCATE.
Best of luck, to any of you right in the middle of all this. I can promise that it won’t last forever. And usually, survivors of HG have their lives completely changed by the experience, in a lot of ways. Many of those ways are good. We tend to have a fierce bond with our babies, because we survived something so traumatic together. We know that we earned each kid a thousand times over, which can be comforting when you have fears of being a good parent. We become strong in mental and emotional ways that probably wouldn’t have been possible without experiencing such a debilitating illness. We are warriors, fighting for survival against odds that totally suck. Hang in there, strong mom. You can do this.
You can find the other posts in my series on hyperemesis gravidarum here.