Category Archives: Hyperemesis Gravidarum

Surviving the Stomach Flu post HG

Yes, I am here to whine a bit. 

Despite the fact that no one else in my family has gotten sick, I strongly suspect that I am recovering from norovirus.  I had severe vomiting, dizziness, nausea, stomach cramps, and body aches.  Oh, the body aches.  Let me tell you!  The pain in my legs was indescribable.  It felt like my bones were breaking from the inside.  All I could do was lay in bed and moan.  It was horrible.

I got sick this past Saturday, and now, on Friday, a week later, I am finally able to get back to work.  Saturday was the worst day with intense nausea, dizziness, vomiting, body aches, and fever.  Sunday, I felt better, but by the night I was sick again.  Monday, I wanted very badly to feel better, but… no luck.  Tuesday, I thought I was on the mend, but that night I woke up with intense dizziness, nausea, chills, and shakes.  Wednesday, we went to the doctors where they tested me for everything from pregnancy to appendicitis.  Thursday, I felt weak and tired, but started taking probiotics and had a dramatic improvement.  I was finally able to eat food!  Friday, I was able to go back to work.

Aside from the illness itself, one of the hardest parts about this illness were the memories it brought up.  This was the same season I started getting sick when I was pregnant with Katie, and remembering the hyperemesis was painful and frightening.  I smelled the same smells and felt the same feelings.

I was afraid to eat and drink, and even the taste of the Zofran triggered panic and fear.

It was so awful that I even sent Juan to the pharmacy to pick up a pregnancy test.  I spent a day convinced that this was actually HG and that I would never feel well again.

At any rate, I eventually recovered.  I credit the Bio-K probiotics I started yesterday morning for a large part of my recovery.

There isn’t really a moral to this story except that hyperemesis never leaves you.  Even when the illness goes away, the fear stays.

Hyperemesis sucks.

Hyperemesis Across the Pond

I’m pleased to bring you a guest post from Amanda, a UK HG survivor and a fellow mommy blogger.  Amanda suffered from undiagnosed Hyperemesis Gravidarum during her first pregnancy in 2011, and had to fight until 21 weeks to get treatment for it. This, alongside other complications, has left her and her whole family terrified of another pregnancy, despite the desire for a larger family. Her experience has made her passionate about raising awareness of HG and she writes about it regularly on her own blog, The Family Patch, as well as supporting the work of Pregnancy Sickness Support, the UK’s only national charity dedicated to raising awareness of Hyperemesis Gravidarum.

 She is also currently writing a book on Hyperemesis, based heavily on research and the personal accounts of women who have suffered from HG in the UK.

With the recent news about the Duchess of Cambridge, Kate Middleton, being diagnosed with and treated for Hyperemesis Gravidarum, the condition seems to have received a much needed boost of media coverage.

And so many of us in the HG community have been wondering what treatment she is getting, which may be easier for us in the UK than those of you in the US, as our healthcare systems differ in some rather large ways when it comes to this. Something I know from experience…

During my own pregnancy the majority of the information I found was from the US and some of it just didn’t relate to my experience over here. And yet, it was a US blogger (the wonderful owner of this blog) who listened to my plea when at 20 weeks I was still being refused treatment and then told me to get right back to the doctors and get the medication I needed.

Despite the differences in our healthcare systems, the experience of Hyperemesis Gravidarum is the same no matter where you are in the world. We all feel for poor Kate, just as we all feel compassion and empathy for any single woman we hear of who is facing the hell of a Hyperemesis pregnancy. It is a universal thing, and something that brings us all together as a community.

 And yet, without an understanding of the ways in which our treatment options differ, it can be challenging to offer support and share the information and knowledge we may have. So let’s look at some of the major differences…

 First of all, healthcare is free in the UK to anyone and everyone. The National Health Service (NHS) offers the opportunity to see a doctor (General Practitioner or GP) or midwife whenever you need it, free of charge.

 This is something we often do not appreciate enough. We are very lucky in this respect, but it does sometimes have its downsides, including the fact that you can often see a different GP every time you visit your GP surgery (what we call the doctor’s office). Within the first 20 weeks of my pregnancy I saw five different GPs.

 There are, of course, some real perks to free healthcare, including free prescriptions during pregnancy. Which means once prescribed anti-emetics, there is no paying for them. But it does mean that some women struggle to get prescriptions for the more expensive medications, if the GP decides a cheaper drug is a better option (even if this has proven to be less effective).

 And then there is the fact that IV hydration at home is just not a possibility here in the UK. I have heard of a couple of women with severe cases of HG being treated at home, but generally it is not an option. The NHS just does not have the means to do this. So any woman needing IV hydration must travel to her nearest hospital with with the facility to do this and, usually, be admitted for an overnight stay. Although, having said this, some hospitals are starting to offer day-admissions.

 We also do not have Zofran pumps here in the UK, which I know are relatively common in the US. In fact, we even have a different name for Zofran – here it is called Ondansetron. It took me a long time to make that connection when switching between US and UK support groups!

 I’m sure there are other differences I may have missed, but these seem like the big ones. I hope it has helped shed some light on the way HG is treated in the UK, and the fact that despite these differences, often it is the struggle to get recognition of the severity of our sickness and the treatment we need that is universal and gives us far more in common than separates us.

The Emotional Toll of Hyperemesis

I think most of us in the hyperemesis community are thankful for the attention that HG has been receiving lately.  We’re finally seeing some recognition for the terrible physical hardships we endured bringing out babies into the world.  One thing that we haven’t seen much of, though, is coverage of the emotional toll HG takes.

HG is a traumatic experience that leaves many of us changed forever.  I posted recently on my Facebook page about this and got some heartbreaking responses:

It left me feeling depressed, and hopeless. I felt cheated out of a “normal” pregnancy experience. After my second pregnancy it has also left me terrified to have another child. – KH

Torn between wanting to carry my babies to term and wanting to terminate. Fear of ever getting pregnant again. Fear of vomiting in general. Lingering food and smell aversions. Scared of sex, what it protection fails? – JF

Depression. Hopelessness. Anger. Scared I wouldn’t make it the whole way through. I felt thoroughly misunderstood. Nobody understood what I was going through. I felt so alone. – RR

Major emotional depression from being in such a dysfunctional and debilitated state with little to no empathetic support. That totally did my head in and I struggled to find my strength for life after that. – BS

For myself, the HG caused severe depression, which was made worse by some of the medication.  When I started contemplating suicide in my first pregnancy, an alert home healthcare nurse stepped in and had my doctor stop the prescription of Reglan.  Turns out a side effect of that medication is suicidal ideation, and I had been taking it at its maximum dose via a subcutaneous drip.  No wonder I was experiencing those horrible side effects!

 

I thought the depression was mostly related to the Reglan, but I was not surprised to experience it again during my second pregnancy.  The sense of isolation and despair can become almost unbearable.  Yes, many of us are on bedrest, but perusing articles on bedrest survival and an HG survivor will quickly shake her had and dismiss the advice.  Much of the bedrest advice revolves around boredom: read parenting books, start a scrapbook, order baby gear online, chat with other moms on bedrest.  Those things are impossible for many HG sufferers.  For most of us, we spend our days and nights curled up, eyes shut, trying desperately to will ourselves not to throw up.  It is an inescapable hell that is difficult to comprehend or explain.  Is it any wonder that so many HG sufferers become depressed?

The deep sense of isolation is far and away the most painful part of HG. Knowing that many people can’t relate and fearing harsh words, many HG sufferers retreat from friends and family members. Even many doctors minimize the suffering caused by HG. A few days after being admitted to the hospital for the umpteenth time during my 2nd pregnancy because my ketones were off the charts and I had begun hallucinating, the on-call doctor told me that there was nothing wrong with me.  Is it any wonder we hide?

The trauma we experience during HG can lead to life-long anxiety.  HG survivors experience post traumatic stress disorder, emetophobia (fear of nausea and vomiting), postpartum depression, and a whole host of long-lasting emotional problems.  Some of us, myself included, develop anxiety around hospitals, needles, and medical procedures.  Many of us feel angry and cheated for not having the glowing pregnancy that other women get to experience.  This anger and anxiety comes up each time we hear news organizations referring to hyperemesis as “Extreme Morning Sickness.”

Please call hyperemesis gravidarum what it is.   If it’s hard to say, you can just call it HG.  The next time you speak to an HG sufferer or survivor, validate her struggle.  Express sympathy for what she went through and may still be experiencing.  Most of all, please understand that hyperemesis is a real and terrible disease that can have a lasting impact on survivors both physically and emotionally.

Hyperemesis 101: What it is and how you can help

The British royal family on Buckingham Palace ...
The British royal family on Buckingham Palace balcony after Prince William and Kate Middleton were married. Kate wears a wedding gown by Sarah Burton. (Photo credit: Wikipedia)

Since the news yesterday about Kate Middleton and her hospitalization due to hyperemesis gravidarum (HG), I’ve seen a pretty significant bump in traffic (mostly thanks to an Inquisitr article about hyperemesis), and since many of my new visitors may not be completely familiar with hyperemesis, I thought it might be a good idea to give a brief overview on what HG is, what it isn’t, and how you can help those who suffer with this illness.

What is hyperemesis gravidarum (HG)?

You’ve probably seen many news outlets referring to Kate’s illness as extreme morning sickness or even just plain morning sickness.  While morning sickness is related to HG, the two are not the same.  Morning sickness is often a normal part of pregnancy and can be handled with home remedies, fresh air, and occaisionally small amounts of medication.  HG at its most basic certainly is an extreme form of morning sickness in the same sense that measles is an extreme form of a skin rash.  For HG sufferers, the vomiting and nausea is so severe that we can lose 10% or more of our body weight, become severely dehydrated and malnourished, and even miscarry or lose our own lives.  For some HG sufferers, the danger becomes so great that they are forced to terminate very much wanted and planned for pregnancies.

Unlike morning sickness, HG often doesn’t respond at all to home remedies, and even common morning sickness medications cannot control the illness.  In order to combat the illness, many HG sufferers are placed on 24 hour IV fluid drip either through the traditional IV lines that are placed in the arms or through more permanent PICC lines or other forms of central lines that are placed in the big veins around the heart or through the jugular vein in the neck.  We often have to receive our medications through either these lines or through a pump that delivers the medication below our skin at sites placed in our abdomens or upper legs. 

HG sufferers often find themselves on a variety of medications, what we call our HG cocktail, to combat the different aspects of the illness.  Medications like Reglan move food more quickly out of the stomach so it can’t be thrown up as easily.  Zofran, in high enough doses, blocks the body from vomiting.  Drugs like Nexium combat the persistant reflux that causes food to almost spill from our stomachs as we move, bend, or roll over in bed.  Meclazine or Benadryl (sometimes both together) help fend off the nausea.

In addition to the physical illness, many HG sufferers find themselves becoming severely depressed and isolated.  Because many people don’t understand the differences between HG and morning sickness, HG sufferers may withdraw from relationships to protect themselves from people who do not understand the illness and attempt to help by offering platitudes, home remedy ideas, or even scoldings and harsh words.  Some HG sufferers become suicidal either as a result of the severe depression and isolation caused by the illness or as a side effect of the medication (Reglan).  Sometimes HG sufferers experience halucinations and other extreme mental disturbances as a result of becoming so severely dehydrated and malnourished.

How long does it last?

Unlike traditional morning sickness, HG often lasts through most, if not all of the pregnancy.  While many doctors promise a swift end to the illness at around 12 weeks, many HG sufferers find that the nausea and vomiting is actually at its worst during this time.  This can be a terrible emotional blow to a woman holding on that 12 week mark as the end date to the suffering.

While some HG sufferers vomit constantly for the entire 9 months, many do find some relief during their 2nd trimester.  The HG never truly goes away, but for a time, the vomiting and nausea can reduce somewhat or even cease altoghether.

Following the period of respite in the 2nd trimester, most HG sufferers experience what is referred to as the Third Trimester Relapse.  During this period, the nausea and vomiting return, but in some cases the physical changes of the woman’s body means that the 1st trimester HG cocktail may not work.  She may need to work with her doctor to find a new combination of medications to combat the illness.

Typically, once the HG sufferer gives birth and no longer carries the placenta, the HG disappears.

Are there any lasting effects of hyperemesis?

HG can have effects that last long after the birth of the baby.  The severe vomiting can cause tooth decay and other dental issues.  Depression and PTSD are common in HG survivors.  Many continue to have food aversions long after the HG has left them.  For a very unlucky few, the vomiting and nausea continues for some time after the birth of their baby.  A small number of women even have trouble breastfeeding because the oxytocin rush causes them to feel nauseated.  Most HG survivors develop some degree of emetophobia, fear of nausea and vomiting.

What can I do to help?

Do you know of someone with HG or someone with really bad morning sickness that just won’t go away that you think might be a form of HG?  Here are some dos and don’ts to help them.

Do…

Call her.  Ask if how she is doing and really listen.  Isolation is a truly painful part of HG and knowing that your friends are thinking of you helps immensely. 

Ask if you go for a visit, but instruct her that she is to stay in bed and not get up.    If she’s not up for much talking, you can help with some light cleaning.  A quick turn around the house with the vacuum, taking the trash out, and washing the dishes can be immensely helpful.

She may be embarassed about the state of her bathroom, but a clean toilet is much nicer to puke into.  If you clean the toilet with baking soda, you won’t have to worry about the smell of the cleaner making her sick.  Run a load of laundry (including folding and putting away) with an unscented soap like Charlie’s Soap or Rockin’ Green Unscented.  Trust me when I say that the smell of the unscented Tide and All detergents can be a major trigger.  Change her sheets for her.  She’s spending all day in bed, and having clean sheets is a luxury.

Offer to bring meals for the family, but please keep in mind that food smells can cause the vomiting to worsen.  Bringing foods that don’t require cooking like a nice chef salad or other low-scent meal would be thoughtful.  You can also offer to run a few errands for her like a quick trip to the grocery store (might want to talk food needs with her spouse because the mere mention of food can often trigger vomiting), the pharmacy to pick up her meds, or some place like WalMart or Target to get some household basics like paper towels and toilet paper.

If she has kids, offer to take them to the park, the zoo, or on a playdate on a regular basis.  Knowing that her children are having fun with a friend can help ease much of the tension, depression, and guilt she is feeling over not being able to care for them during her illness.

When you talk to her, validate her feelings even if they do sound incredibly negative.  Offer a sympathetic ear.  Provide her with information about the illness including links to websites like www.helpher.org.  If you are close enough, offer to go with her to a doctor’s appointment to help advocate for her.  It’s hard to advocate for yourself when you are weak from malnutrition and dehydration.  Many doctors and nurses do not take HG seriously, and for that reason, having a strong advocate at her side is a must.

Give her a link to the protocol section of my blog.  Having an example of what one HG survivor did to combat the illness can help her and her spouse advocate for proper treatment.

Dont…

Please don’t ask her if she has tried ginger, nibbling crackers, eating very small meals, or any other home remedy.  If home remedies worked, HG sufferers wouldn’t have to spend thousands of dollars on medication and treatments.  Please don’t tell her that a little fresh air and sunshine is what she needs.  Outside air often has smells that trigger vomiting and light can be a trigger, too.

Please don’t attempt to relate to her by telling her about your morning sickness.  She would kill for regular morning sickness right now, and hearing about other pregnant women without HG adds to her sense of isolation.  Please don’t suggest that the HG is caused by anxiety, depression, doubt about becoming a mother, or lack of love for her unborn child.  HG isn’t a psychological illness.  Though HG causes many psychological issues, the illness itself is very real and very physical.

When you visit, please don’t wear perfumes or scented lotions.  Those kinds of things can be a major trigger for the vomiting.  Just before visiting, please also don’t eat very smelly foods like garlic bread, onion rings, or other items that she might smell with her hyper-sensitive nose.

Please don’t talk about or mention food.  Conversely, if she asks you to bring something strange like a McDonald’s cheeseburger or a taco bell bean burrito, don’t chide her for eating fast food.  For many HG sufferers, this is the only kind of food that will stay down.

Please don’t express concern over whether the medications she is taking are safe for the baby.  She is under the care of her physician, and they have determined that the risks of not taking the medications (which can include death) outweigh the risks to the baby.  Most HG medicines are perfectly safe during pregnancy, but many HG sufferers still feel incredible amounts of guilt over taking any kind of medication.  Please don’t add to that guilt.

More ways to help…

If you aren’t directly in contact with and HG sufferer, you can donate to www.helpher.org to help support research about HG.

Spread the word.  HG often goes unrecognized by many doctors, nurses, and lay people.  Talk about it with them.  Keep the conversation going.  The more we spread the word about HG, the fewer women will have to suffer alone, in silence, and without treatment.

I hope this has been informative to you.  Do you know someone who has gone through HG?  What are some ideas you have on ways you can help them?  Have you gone through HG?  Tell us about your experience.  What was helpful?  What was not?

An Open Letter to Her Royal Highness, Kate Middleton

Dear Duchess Kate,

I just heard the news that you have been hospitalized for Hyperemesis Gravidarum.  I am so, so sorry to hear that you are sick, and I wanted to let you know that I understand what you are going through.  HG is a very special kind of hell that most people can’t even imagine.

The newspapers said that you haven’t hit the 12 week mark yet, so I am going to guess that the HG is just starting to ramp up.  I know that you are receiving the very best care that medical science can provide, and for that I am grateful.  This early, things may get worse before they get better, but it will get better.  I promise you, it will get better.  You have a long road ahead of you, but please hold faith in your heart that when your beautiful baby is born, you will feel better.

You may hear some ugly things from people now that this has hit the news.  People may attack you for taking the very medicine that is saving your life and your baby’s life.  They may attack you for losing too much weight, for not eating enough, for not eating enough of the “right” foods.  (Actually, they probably do that already.)  They may tell you to stop whining about how sick you are (even though you probably haven’t whined at all).  They may tell you to just eat some food and get over it.  We, your HG sisters, have all heard these things, but you will probably here it worse than we ever did because instead of coming from individuals, it may come from tabloids and newspapers. 

Please ignore them.  Let other people worry about it.  Your road right now is hard enough.  Surround yourself with the love and support of your family, and know that there are other women out there who have survived HG and who are thinking of you.  We know what it’s like to not be able to eat.  We know how it feels to think your body is broken.  We know what it’s like when our doctors tell us to go home and eat a cracker and sip some water.  We know you love your baby and we know that you are fighting for your life and the life of your baby.  You are not alone.

I am so sorry that you have HG.  I promise you that it isn’t a forever thing.  The HG community is a powerful sisterhood and I know that there are many who will add their voices and prayers to mine to say that it gets better.  Not today, not tomorrow, but it will get better.

With love and Solidarity,

Molly A.

Hyperemesis Gravidarum: Is it all in our heads?

How many times have you heard this:

“You’d feel a lot better if you would adjust your attitude.”  “You should be more positive.”  “That Molly. She’s so excitable isn’t she.”  “Maybe you should see a tharapist?”  “You’re not sick.  You’re pregnant.”  “You’re weak.”  “You’re hysterical.”  “You’re doing this to yourself.”

From doctors. From nurses. From the lady taking your vitals in the hospital. From a friend. From a relative. From your spouse?

It’s all in our heads.  We’re doing this to ourselves.  It’s our fault we’re so sick.

Over and over and over.

Some HGers aren’t lucky enough to have a support system.  They suffer and suffer believing to their core that what they are experiencing isn’t real.  They blame themselves when they miscarry.  They feel the agony of guilt when they have to terminate the pregnancy that they were so excited for just to save their own lives.  If they’re like the woman a few years back at one of my local hospitals, they die.  It’s their own fault.  If they hadn’t been so weak, so fragile, so excitable.

A new study has come out: Is hyperemesis gravidarum associated with mood, anxiety and personality disorders: a case-control study.

Apparently, according to the abstract, HG is a relatively common medical problem among pregnant women.  Well, gosh.  I certainly learned something today.  I wasn’t aware that it’s common for pregnant women to require PICC lines, constant IV hydration, high doses of multiple medications, and bed rest.  I wasn’t aware either that it’s relatively common for pregnant women to become so dehydrated that they begin to halucinate, to vomit until their esophagi tear and they start to vomit blood, to become so malnourished that they lose their babies, for their kidneys to fail, to die.

I didn’t realize any of that was relatively common.

After looking quite a large sample size of 142 patients and observing whether or not there were mental health issues prior to the pregnancy, these psychiatrists conclude:

The results of the present study suggest that mood and anxiety disorders, and personality disturbances are frequently observed among women with HG and that there is a potential relationship between these psychiatric disorders and HG during pregnancy.

Pardon my skepticism, but this has been done before.  It was a crock then and it’s a crock now.

Look, I get that they’re saying that HG isn’t caused by mental illness. Of course not. This is all couched in the language of statistics.  But how many of us have had doctors who told us to just suck it up before sending us on our way with admonitions to take some ginger and eat some crackers?  How many of you have nearly died because of it?  I know at least one of you personally who has had this happen.  I know it nearly happened to me when I was pregnant with Katie.  I remember that Friday night when they suddenly went from, “Molly, you’re in really bad shape. We need to get you on TPN,” to “There’s nothing wrong with you. You need to go home.” (Of course I seemed fine at that point! I’d been on IV fluids, a potassium drip, and IV zofran and nexium for 3 days!)

Oh sure.  Plenty of us who have HG are depressed and anxious.  Who wouldn’t be after what we’ve been through?  HG causes mental illness and depression.  The researchers got it the wrong way round.

This study gives doctors one more reason to blow us off and leave us to die.

Post HG Pregnancy Wrap-Up

I am about a month out of my HG pregnancy now, which is hard to get my head around. I’ve got lots of questions swimming around in my mind.

Did that really just happen? Was it as bad as I remember?

I think the mind shrouds experiences like that in a kind of fog.  I know it happened.  I can go back here on my blog and read about it.  But it just seems so far away and unreal.  Maybe it’s the mind’s way of protecting itself.

Could I have done anything differently?  Did I do anything wrong?

I did so much research going into this.  I have to feel confident that I did the best I could and got really aggressive treatment.  Even with all of that, it was bad.

Really bad.

I still remember that Friday night with the nurses holding me down and trying to get a needle in me and the auditory hallucinations making me think my daughter was there crying for me.  I remember the ER doctor telling me that they were going to put a PICC in and start me on TPN and then 24 hours later another doctor telling me there was nothing wrong.  The night nurse taking my blood pressure so hard that all my needle sticks from earlier in the night started bleeding again.  I remember fighting for a PICC and having the hospital doctors blow me off.  Those three days haunt me.  What if I’d fought harder?  What if my regular doctor had been in town?  What if I’d left the county hospital and headed up the road to the private hospital?  Would my care have been better?  Would they have given me what I needed right then instead of putting it off until it was almost too late?

Did I really survive that?

I remember my mom walking in the door after flying all day and turning right around and taking me back in to the ER because my IV line clotted off.  I remember sitting in triage so scared of the IV stick that I was shaking.  I remember looking as hard as I could at a buckle on my mom’s shoe so that I wouldn’t have to see the needle that Trauma Nurse Andy was getting ready to put in.  I remember my mom hiking up and down the stairs to my bedroom bringing frozen cranberry juice and rehydrating me drop by drop.

And then it stopped.

And I felt guilty.

And then it came back a little.  And I felt guilty.  Because for so many women the 3rd trimester relapse is really bad, and mine was controllable with a doze of Zofran in the morning and a Nexium at night.  It wasn’t that bad, but I still hated every second of it.

And then, suddenly, it was over.  And I had a baby in my arms.

Am I normal again?

I think so.  I still eat smaller meals.  I think my stomach shrank.  I can take prenatal vitamins, which is kind of exciting.  I don’t have to take 12 different pills on schedule throughout the day anymore.  I can enjoy my food.  Even foods that I liked when I was pregnant taste better now that the HG is gone.

And more than anything, I’m happy.

Was it worth it?

Absolutely.  Both of my daughters are miracles.  They are amazing people.  I can’t even express how worth going through HG they are.

Would I do it again?

Absolutely not.  After Katie was born, while I was waiting for contractions to begin again so I could deliver the placenta, I was already asking my midwives to recommend someone to tie my tubes.

As much as I might want a 3rd child, there is no way I can survive HG a third time.  The disease has made the decision for me.  That’s kind of sucky.

Here are some raw numbers for you:

  • Starting weight: 139 lbs
  • Lowest weight: 127 lbs
  • Final weight: 185 lbs
  • Total weight lost: 12 lbs
  • Overall weight gain: 46 lbs
  • Max Zofran dose: 39 mg/day
  • Worst day: Friday, February 18th
  • Day I got my PICC: Tuesday, February 22nd
  • Day my PICC failed: Thursday February 24th
  • Day I turned the corner: Tuesday, March 15th
I think the bottom line is, I survived.  If anyone can get any use out of my HG experiences, it will make blogging about it worthwhile.  In the meantime, though, and for now, I need to not talk about the HG.  I need to leave it in the past.  There are other things I want to write about, and right now the HG just isn’t one of them.  I’ll leave up my protocol and the HG-related links, but for now, I just really need to take a break from that and write about other things.

HG Studies! Even if you haven’t had HG, please consider participating.

I wanted to spend today’s post letting you know about  a couple of HG studies that are going on right now.  I would ask that you please consider participating in these studies.  Even if you haven’t had HG, you can still participate.  The research group actually really needs control subjects who did not have HG to help understand the information gathered from the participants with HG.

Here are the studies:

Current 2007-2015 Study: Genetics of Hyperemesis Gravidarum (HG)

This study is designed to identify individuals affected with HG, to study epidemiologic factors via an online survey, to collect DNA samples from saliva through the mail at no cost or travel for you, and to search for genes and risk factors that may be potentially associated with this condition. To be eligible, you must have suffered from HG and had treatment for your HG that includes i.v. hydration, TPN or other form of non-oral feeding (ie nasogastric feeding), OR both, and are able to recruit a friend with at least 2 pregnancies who has NOT suffered from HG to serve as a control.

You can learn more about the study and register here.  The study itself is very easy and painless.  After you take a detailed online survey, they will mail you a cheek swab kit so that they can register and analyze your DNA.  That’s it.  No doctor’s visits.  Just a little cheek swab that you take yourself.

2011 HG Survey: survey to determine the effectiveness of medications/treatments for HG

We have also begun a new study to determine medication effectiveness.  If you are trying to conceive or newly pregnant and have had HG in a past pregnancy, please consider participating in this study by filling out this short survey as close to your first positive pregnancy test as possible and thereafter to let us know how medications effect your intake and nausea.

You can learn more about the survey and register here.

 

These kinds of studies are so critical.  The more we know about the root causes of HG, the better treatment we can find.  Even though this won’t affect my childbearing years or decisions, I hope that the results of these studies will help my daughters.  There’s a strong chance, due to the genetic nature of HG, that one or both of my girls will suffer from this disease.  If I can protect them even a little bit from this.  I want to.  Please consider helping.

Here is a selection of the articles they’ve been able to publish as a result of their studies:

A Healing Article from an HG Sister

Just this past week I learned that Jessica from The Leaky B@@b is a fellow HGer.

I had no idea!

And, in a fortuitous twist, she published a fantastic article that struck to the core of some of the emotions I’ve been feeling about my HG pregnancies: Tone, filters, and information.

It seems like every time I turn around, there is some article that gets published about how if you have a great diet during pregnancy or exercise during pregnancy, your baby will be healthier and have a number of advantages.  Since good eating and exercise aren’t really options for those of us with HG, these articles usually cause me to roll my eyes, feel guilty, and sometimes even angry that I can’t have just a normal pregnancy like everyone else.

Oddly enough, I feel very strongly that we shouldn’t take on guilt simply because of our circumstances.  We should be able to share information to mothers be it about childbirth interventions and risk management or breastfeeding.  We should be able to discuss these issues openly and honestly without the knee-jerk defensive reaction.

And yet…

And yet, when I see the information out there about pregnancy diet and exercise, I experience that same feeling of defensiveness that makes me crazy when talking about non-HG-related issues.

Jessica writes:

Do those articles set out to make me feel guilty that I barely eat during my pregnancies?  No, they are just sharing information and sometimes aim to encourage and inspire moms.  Do the moms celebrating their beautiful pregnancy experience do so to punch me in the gut and knock me down?  I’m pretty sure they are just excited about their own experience.  Does the fact that I have very little physical activity during the prenatal stage of my mothering make me a bad mom?  I don’t think so but it doesn’t mean I don’t wonder from time to time or that it doesn’t hurt a little when I’m faced with the reality that it really isn’t a good thing and could be putting my children at risk.  Blaming the information though doesn’t help me or make my reality better.  Hiding it, or worse denying it, doesn’t help anyone else either.

We should still share information, we should still read information and we hopefully do this in a safe community where processing the information can happen through trusting and supportive dialogue.  I hope that by keeping in mind the fact that we do not know everything there is to a person’s back story and why they make the choices they do we can remember to be more sensitive in how we share information.  I hope that by keeping in mind the fact that we all bring our own baggage to any topic we can remember to try not to take information sharing as personal jabs.  It is through these steps that we can support one another and make a difference for others.

Reading this article really gave me a sense of healing.  It helped me build a bridge from one aspect of my life, writing, and personal views to another.

Thank you Jessica.  You gave me a lot to think about.

A Week of Appointments

This week has been full of appointments!

Well, I suppose two appointments doesn’t really count as “full” but it just seemed pretty busy.

On Tuesday, Juan went with me to the appointment with the midwives.  Since we’re getting down to the wire, I wanted him to go again.  The appointment went well.  We reviewed the birth preferences we had written up and there were no issues.  Everything was just fine, and most of the things I had listed were things that they either do or don’t do anyway. 

The only exception was the internal checks.  They usually do internal checks, but she said there’s no reason why they need to do them.  If I prefer to skip them, that’s just fine.  She even said that she wouldn’t need to check me if I suddenly feel the urge to push.  She said if I did a little trial push and felt the baby moving down, we were ready to go!  If I do a little push and it hurts, then we know I need to give my body more time to dilate a bit more.  So there’s no need to 3 nurses and 2 doctors to be reaching up in there.  That’s so refreshing and comforting to know.

Tuesday was also the day of my Group B Strep test.  We won’t know for a while what the results are.  Once we know, we’ll be able to finalize a few of the items in the birth preferences list and I’ll post the final draft so you can see it.

Aside from those things, it was a usual appointment.  I got measured and I’m measuring right where I should be.  We got to hear the baby’s heartbeat.  And feel her position.  She’s still head down, although, she did roll around while the midwife was feeling her so that her back was up against my back.  She seems to have rolled back into place later, though, and there’s still plenty of time for her to move around.  She’s doing great in other words!  Headbutting my bladder as much as possible!

Thursday, I had my first appointment with the therapist.  I won’t go into all the details here, but it went really well.  We talked a lot about feelings of powerlessness and where in my life I am powerful.  It was amazing how good it felt to have someone validate what I’d been through in the hospital that one really bad Friday night.  She’s a medical professional who works with people with eating disorders in addition to being a counselor, so she was able to point out why what I had been through and validate just how serious my situation was.  Hearing her tell me that, yes, I was actually pretty close to dying that Friday night really helped me come to terms with things and let go of the guilt I’ve been carrying for being angry over the lack of treatment I received at the hands of the hospital.

Anyway, it was a good experience.  I really felt like I was able to connect with her, and I appreciated that she didn’t try to logic me to death like the previous counselor I saw (way back in January).  I’ll keep going back to her for a while.  It’s really seemed to do me some good.

So, it’s been a busy week.  Tomorrow I’ll be 36 weeks.  I think I posted previously that 36 weeks is considered full term, but that’s not correct.  37 weeks is full term.

I’ve got 4 working days next week and 5 working days the week after.  Then I go out on maternity leave.  I can’t wait to be done with work!  One less thing that I will have to worry about.