HG Awareness Day -- Our Journey

In the same way that HG seems to have completely taken over my blog for the last almost-year, it completely consumes your life. I still have not completed the PICC line series because I am editing pictures for it, a surprisingly long process, but I wanted to do this.  You see, today is Hyperemesis Gravidarum Awareness Day.

Didn't know there was such a thing? 

Yeah, me either, until this year anyway.  In fact, prior to this year I was completely and blissfully unaware of pretty much anything to do with HG.  Ignorance, as they say, is bliss.

While I certainly shared a lot here on the blog about infusion pumps, IVs, and doctors appointments I feel like I never really talked about HG.  I know that sounds really contradictory, but I rarely touched on the emotions or described how sick I was, it was certainly implied but never explained.  This was largely because acknowledging hell, while you are walking through it, is incredibly hard to do.  I worked extremely hard at remaining positive, and admitting out loud how hard day to day survival was ... well, that made the reality, the depression, and the fear all that more real.  It was easier to just focus on the mechanics of day to day living -- how to use a Reglan Pump, how to sleep with an IV hooked up to you -- rather than begin to touch the explosive iceberg of how it made me FEEL.  

I think I will attempt to do that now.  Because this condition is horrible, and the only way we will ever be rid of it is to build awareness and hopefully a cure someday ...

The hardest part of HG, emotionally, is the isolation.  It is deeply, profoundly, cripplingly isolating.  

Showing off after my first IV.  I had over 40, not including
the 24/7 infusions with the PICC line.

I was bedridden at first, so I was away from my husband and children.  I couldn't go anywhere at all for the first several months, so I saw no one outside of my immediate family.  Even once I was a little better, actually socializing was pretty impossible.  I couldn't go anywhere with food for fear of getting sick.  

And no one gets it.  I had a lot of loving people around me, but I was the only one vomiting bile several times a day.  I wouldn't pretend to understand what it was like for those who love me to have to watch me deteriorate, either.

The time that is meant to be your happiest is also your most miserable.  You are robbed of the joy that pregnancy brings.  While no one is comfortable for ALL of their pregnancy, the very nature of it is physically a challenge for most women, there are still good days.  Still things to look forward to.  While the end result of an HG pregnancy is the same as that of a regular "fluffy" pregnancy -- you have a baby -- the joyful stuff is difficult, if not impossible, to just enjoy.  

How much medication will I have to take to not puke on my guests at the baby shower?  Will I even be able to sit up that long?

Every time the baby kicks you get more nauseated, its like motion sickness from the inside.

I don't marvel at my changing body, I weep as I see myself deteriorate.  

While I get to see my baby a lot at all these ultrasounds, I hold my breath for the first 10 seconds until I see that flash of a heartbeat is still there...

Small sample of medical supplies

My first trimester is a blur to me now.  Honestly, I don't know how we survived.  I barely made it out of bed most days, I hid under the covers, dry heaving and sobbing, while my husband cooked the kids dinner.  I started to loose weight, first only a few pounds, then twenty.  I could see that my legs had actually atrophied from being so bed-ridden.  Neither my husband nor I really told anyone.  At that point we were both really thinking this would lift soon, surely.  I shared much of my later trimesters on Facebook from my phone with friends and family who'd ask, but I couldn't even get to the computer in the beginning or stand the sight of my phone scrolling.  When I was able to, I had to stay away from Facebook and Pinterest because of all the food posted on both.  

At the end of that first trimester I was incredibly sick despite being on pills and my doctor panicked and began my home health care journey.  Any hope I had that I would be "normal" again was foolish, but I wasn't at death's door anymore.  Anti-nausea medication is poorly named because it does not, in fact, remove your nausea.  It makes it so you throw up less, if you are lucky.  Treatment for HG is more hope than science, the medications I was taking are not approved for use in pregnant women and are usually given to those undergoing chemotherapy.  

I eventually did get a reprieve from the actual throwing up, but I never stopped the nausea or dry heaving.  I actually wretched so bad the morning of my induction I was scared I would pull muscles again and it would hinder my ability to handle labor.  

While other pregnant women could look forward to things, I was surviving.  While other pregnant women could indulge in cravings I was avoiding food at all costs or identifying my "safe" foods (the ones I magically could keep down or were less punishing for me to throw up).  While other pregnant women were combing over baby name books, reveling in the exciting hope and plans that come with the addition of a new person to the world, I was vomiting thirty times a day.  I was hurting, everywhere.  I was dry heaving more times than I could count with such force I pulled muscles.  I burst blood vessels in my eyes and capillaries on my face with the force of my throwing up.  I didn't need to see or think about, or smell food to get sick, the way normal women with morning sickness do.  Speaking, the simple act of opening my mouth, would make me throw up.  I would whisper to my husband when he'd ask me something, because the vibration of my vocal chords would make me throw up.  I had the constant taste of death in my mouth.  I was so weak that moving at all, was just too much some days.  

Source: http://www.helpher.org/

My stomach was covered in bruises and welts from my infusion pump and my bad reactions to it.  My arms were littered with puncture marks from IV sticks, at least half of them failures.  My veins were so scared they were palpable to even my untrained hands because they were so hard.  My lips were permanently chapped from the near constant state of dehydration.  My gums would bleed because of how much I was puking and because I could barely brush my teeth because the toothbrush made me gag -- a sick irony if you ask me.  I have scars from both of my PICC lines.  Our house was taken over by medical supplies, boxes arrived each week and my husband moved furniture based on how easy it would be to drag an IV cart around.  

I wanted desperately to not be pregnant, but was simultaneously terrified of my pregnancy ending.  I was supremely guilty for thinking of myself.  I wanted relief, and the only way I'd get it was to survive until my due date. I was terrified that I wouldn't get better, that we wouldn't make it, that there would be some horrible lasting impact on my baby from lack of nutrition or the countless medications I was taking.  Some women with HG suffer from organ failure.  Some women lose their baby.  Some have even died themselves.  

It was hell.  And few people can begin to approach understanding it because we all have our own experiences ... and we all have our own challenges and crosses to bear.

At three years old, the Beans drew me with an
IV and infusion pump because it
became normal

HG was undoubtedly the most challenging thing I have ever lived through.  It changed me as a person on a level few things can.  Honestly, I cannot think of an element of my life it did not change.  The experience taught me a lot about myself as a person, a lot about my incredible husband, a lot about my closest family and friends.  I took refuge in my faith because I had little else.  I watched both of my existing children mature in a way that was both painful for me and warmed my heart.  

I read somewhere that women who's mothers battled HG have a higher risk of developing it themselves.  This saddens me more than I can express.  My daughter is already an HG survivor and if she chooses to become a mother she may have to face it in a different way.

This means I have to do my part in raising awareness over the next twenty some odd years.
This means we need to find a cure, or at least a reasonable means of treatment.

Now.   

Pick-me-up

As of my last post, I was pretty much a total downer.  Sorry 'bout that, but to be honest this has been a roller coaster.  Greater than any other medical roller coaster *I* have been on personally and it would really be dishonest of me to only post the good stuff.  Some days I am like "I got this, I can do it!" and other days I want to mope and feel very sorry for myself.  I believe I am entitled to have both days.

Today, though, is a good day.  So I figured a little writing and catching up was in order.

Since I left off I have had to have my PICC replaced once due to it clotting off somehow.  I will post about that independently because I know for me, the removal process and what could go "wrong" with a PICC consumed a lot of my thoughts especially in the beginning.  It is better now, though I still worry and have some anxiety about something going wrong again.  Not that I logically have need to worry, just when you go through stuff sometimes it makes you worry.

Anyway, I have wanted to just throw something out there in case my last post left anyone upset because I was pretty down.  I was only a few hours out from getting my PICC and it is overwhelming in a lot of ways.  It represented a huge change, and mentally I felt very much like a failure not only because of all the things I couldn't do (some of which now I can) but also because the PICC was such a "last resort" kind of thing that getting there felt like a big step in the wrong direction.

Perspective is everything, however.  While there are still bad days, and while I will never say that I looooooove having a PICC line, I will say that I 100% do NOT regret getting this sucker.  It has been the right choice for me and for my baby.

I have to be more transparent, with myself even, on the bad days.  I have to give myself permission to vent, because I find that I am constantly trying to reprimand myself for feeling crummy about the way things are now.  It is okay to feel bleh, angry, depressed ... that is all normal.  Even if it is all worth it in the end, it sucks right now.  I can't -- and won't -- give into it, but it isn't being fair to me or fairly representing HG to only post my sarcastic spin on the misery or advice on how not to be a total buttface to someone with HG.  

I am working on a PICC series -- this one will include having it placed, removed, and the day-
to-day stuff.  Since some days are better than others I am not sure how long it will take for me to actually manufacture those posts, but I am working on it.  I am also working on some other posts that may feel a little diary entry-ish to a reader but I have a lot of time to think lately and I know eventually I will want to look back on my thoughts during this time.  Blogging about it is as good a place as any to slap those musings down for posterity.

So since it is a good day health-wise, I am here writing and will hopefully crank out a couple posts or at least get started.  Today I am feeling good enough that being positive and hopeful is possible, so I am focusing on that and will keep on moving forward either way!

PICC Line Pity Party

Well the PICC is in and to be honest of the process of actually getting it put in -- I have had worse
IVs.

As for how I feel today ... well, I know that this will get better because I will continue to heal and get less sore, and I will learn how to navigate all the stuff that is so foreign and new right now in no time.  So I know this will get better.  But for now I just want to feel very very sorry for myself.

I hurt.

I feel so unable to do anything.

I am panicking about my lack of ability to do anything independently.

HG has made me such a shell of my usual me.  The energy I had, the things I did, have all changed.  Now, typing this is hard and I have to do it in stages.

I run two Etsy shops.  Well, I did.  I do home preschool with the Beans.  Well, I did.  I manage the house, cleaning, cooking, and schedules of my family.  Well, I did.  I feel like I contribute very little outside of growing this little person, which I know is a monumental task and everything ... but it breaks my heart to see how tired my husband is.  How my kids are gradually getting used to what I cannot do for them.

Now this ... I had a hellova time getting myself dressed today.  I am not even hooked up to fluids because the nurse wasn't able to come out yesterday.  That is two more lines connecting me to something that presently I don't have to deal with.  And I still barely got my socks and shoes on.  I needed to flush the PICC last night and Bunyan had to help because I cannot hook the syringes up independently given where it is located.  At least not yet, I thought I couldn't with some of my IVs and I figured that out.  I know I will figure out whatever I can, I know that I will have help with whatever I can't.  I just don't want to need to.

Fifteen weeks.  There are fifteen weeks left in this pregnancy and I may be on the PICC for every last one of them.  That, on one hand, feels depressing and on the other is a lot of time to figure out a new normal.

I just don't want a new normal.  I want to be just plain old normal again.

But I won't be.

Honestly I will never be quite who I was before this again.  This is the kind of life experience that changes you a bit.  I value my health more now than I ever could have had I just always had it to take for granted.

My nurse comes in a few hours to actually hook me up to the fluids and teach me how to use this sucker properly.  I will get all my questions answered and she will be here once a week to help me troubleshoot and change the dressings.  I know it will get better.  Sometimes you just need to give yourself a moment though, and now I kinda need one.  I need to acknowledge that this is hard, this sucks, and this is overwhelming ... but it could be worse AND it will be worth it once the baby is here.  Once my nurse gets here it is about coping and functioning again, I will have some independence even if it isn't the amount I want.  I need to make a list of questions and stuff.

But for now, I am taking that moment, because I have a lot of work to do later.

HG & IVs Post 3: Random, but good to know!

This is the first post in the HG & IVs series.  If you found this on accident, super!  Follow the links to move to the next post in the series, or head back to the intro post if you want to know what to expect in this set of posts.  If you are looking for the HG Treatment Series about subcutaneous Zofran or Reglan pumps go here for the intro post to that.  

The IV series feels like a lot less than the pump series was, so I keep wondering what massive part I forgot.  In truth, IV treatment doesn't have quite as many unknown parts to it that I think the pumps did, at least for me.  Here though we will briefly talk about some of the random stuff that popped up while I was on IV treatment at some point.  Please keep in mind, if you are here because you googled something to troubleshoot your own IV that I am in no way an authority on this and you should speak with an actual medical professional on it.

So, like I said this is random and I will update it a bit if I think of something else, but here we go.  Tips, tricks, problems, and whatever else I can think of!

The fluid bags themselves:  I never discussed what was in my IV bags because this is highly individual.  For the most part, I gather that people get one or a combination of the following:

1. Saline -- salt and water
2. Lactated Ringers -- salt water and sugar
3. Banana bag -- the above plus minerals (it actually is bright yellow)
4. TPN -- Total Parenteral Nutrition, which will be specific to you

What you get is dependent on what you need and what your doctor orders.  It may change too.  Some people also may get other supplements (like iron for example, but I have heard that stings going in) or medications via IV.

Pillows:  My husband jokes he will need his own bed soon because I am a bit of a pillow collector.  The IVs made this worse, because I find that if I make a little throne for my arm I am much less likely to bump or injure my IV in my sleep.  I also seem to just keep it in a better spot this way so it flows better when I am having a rough IV that wants to clot off or die.  I use the hot pink pillow you may have spotted in some of my pictures, it is a small one that can rest in my lap, on the arm of my recliner, or on my tummy/side when I am all propped up in bed on my other pillows.  As my tummy grows this may need adjusting, but for now that soft pillow makes my arm ache a lot less!

Showers:  Ugh.  Just ugh.  It is hard to shower once an IV is in because they cannot get wet.  I usually try to wash my hair and shower before my nurse gets here so I can at least enjoy one last shower before I am plugged in.  Once they are in, it is a little easier to bathe or sponge bathe while washing my hair in the sink one handed.  Because my IVs die fast I usually get a decent shower every three days with the awkward cleaning in between, which works though may not seem ideal.

Clothing: If you like to have multiple wardrobe changes a day you may get a little annoyed with how cumbersome they become here.  You cannot change shirts with an IV plugged in unless you are in a hospital type gown with snaps in the sleeve.  Honestly there are times I have thought to myself that a night gown I could step into and snap at my neck and sleeves would be great because sometimes with HG you ... well things can get messy and you don't have to be Lady Gaga to require a wardrobe change.  Be picky about what you get dressed in so as to minimize the work and energy you have to expend getting dressed if nothing else.  I have found that my IV site aches and is less effective if cold, so I try to dress accordingly and keep it covered when it is chilly.

Flushing:  I was told to flush my IV before and after anytime I expected to be off it for more than a couple seconds.  So that quick clothing change is no biggie, but when I have to drop Meatball off at school or go to the doctor I need to flush.  Do not, I repeat do NOT, force a flush.  If you screw the flush syringe on and push the plunger and are met with resistance make sure you aren't clamped (sounds simple but I have done that a million times) but do not try to push harder.  I have, and it was awful.  Hurt a lot and the IV was dead anyway.

Blood in the line:  Don't freak out.  You will, but try not to.  I have had blood back up into my line on a couple occasions.  Usually it is a sign that the pressure in my vein is greater than the gravity fed pressure coming down the line.  In other words a couple possibilities are likely: 1. My bag of fluids is too low and needs changed; 2. My bag of fluids is down too low and needs to be higher up (like on the pole, I was holding it once and blood backed up).  In either case it is easy to fix and a flush will 95% of the time push the blood back where it belongs.

Infiltration:  This fancy phrase means that the IV fluids are no longer traveling down the happy highway of your vein and have started to seep out into the surrounding tissue.  Like hikers who foolishly wader from the path, this is a problem.  I would notice tenderness and eventually look swollen when this happened.  IV is dead and needs removed.

IV site leaking:  Oh that was a fun one.  I think the nurse called it backflow.  Basically, my vein clotted off but no one told the IV line.  Usually infiltration happens with me, but twice I had a little infiltration and then I happened to notice fluid under all that tegaderm.  I have a picture here, in black and white.

See how wet it is?  It actually looks pretty good there.  That means that the saline was actually dripping out of the little hole where the catheter went in me.  Messy and sore, meant my IV was certainly no good anymore.

I cannot think of anything else to share here so I am going to call this a wrap and I will come back later if there are comments or anything else that makes me want to add more info here.  IVs have literally been a life saver for both me and baby Pinkie Pie, so while I find them obnoxious and uncomfortable the majority of the time, I really cannot complain about them.

None of this is designed to be medical advice that should replace the expertise of a doctor.  I am merely sharing my experiences and knowledge, not advising you.  I only call myself a "rocket surgeon," I have never been to medical school of any kind and would recommend you get checked by a real professional in the event you have any actual questions.  That said, if you would like me to clarify some part of my experience for you, please feel free to ask in the comments!

HG & IVs Post 2: Getting Hooked Up!

This is the first post in the HG & IVs series.  If you found this on accident, super!  Follow the links to move to the next post in the series, or head back to the intro post if you want to know what to expect in this set of posts.  If you are looking for the HG Treatment Series about subcutaneous Zofran or Reglan pumps go here for the intro post to that.  

So now we know the parts and have all the goodies for the cocktail, let's party!

A large part of the focus home health care nurses seem to have (in my experience) is to make it so that you can independently handle your medical needs.  So the official "hook up" part of the IV is the last thing that the nurse does for me unless I need troubleshooting, which is usually them telling me what to do and will be addressed in the next post.

When we left off I had all these supplies out (provided in those boxes of supplies from the home health care co in the mail) and was waiting for the nurse to come out.  Usually once she (or he, I just haven't happened to have a male nurse yet) get here they follow the same procedure:

1. Verify I am me.
2. Ask me some basic questions about my stats. (Example: What are your ketones at today?)
3. Examine my arms. (Sigh about the state of my veins)
4. Get their supplies out and sanitize their hands.
5. The poking part.
6. Blood pressure in the other arm and more questions.

Depending on the nurse and how cooperative my veins are this can take 20 minutes or a lot longer.

Before we go any further, this is one of the many I have had with a couple terms labeled.  I don't really know all the technical names for everything, but these are the terms I have heard associated with certain pieces.

IVing (yeah, I verbed that) is totally an art form.  Some are more naturally able to get a feel for veins than others and honestly it has to be dang hard.  Those who say it isn't are probably the people who are just kinda good at it naturally or have a lot of practice.

Personally, I am not bothered by needles but, that said, I cannot watch them give me an IV.  I don't look when they poke, and I really can't look if they have to dig.  I hate digging or "fishing" as some call it.  Call it whatever you want, it is torture and usually results in failure on me.

They do the poking with a needle that has a catheter on the outside of it, much like what is pictured in this post for my pump.  Only, and I am just being honest, the needle is bigger.  As in longer and thicker.  The catheter itself has a colored plastic on it that tells you how thick the needle is, they do this by "gauge."  I usually get blue, green is the biggest I have seen and yellow is used in the hands and is smallest.  I think.  Anyone reading this who knows more please feel free to comment and let me know!  Nurses seem to have a preference of their own on what to use, but I find that being assertive and saying what works for me is almost always appreciated.

Once they poke you and are IN the vein (or think they are) they will remove the needle part and leave the catheter in.  They then screw the hub on to the catheter and open the line so that fluid starts dripping.  Some will use a flush, which was in the labeled picture in the previous post.  It is basically a syringe with saline in it.

Weird fact, if they use this and get a vein properly you very well may taste it.  Yuck, but it is a good sign because it means they are in.  Either way they have to check that fluid is going in and the vein is holding.  If your vein blows they need to stop immediately and start over.  More on that in the next post.

Once they have the catheter and hub in they have to secure everything.  Every nurse seems to have a style for this, like they learn a certain way and like to stick with it.  However, some people -- like yours truly -- learn they have a certain way that works for them.  I figure since I am the one living with it I have every right to ask for it to be a certain way if possible.  I cannot use normal tape, even the paper tape that is supposed to be super gentle makes my wimpy skin react so like mentioned in this post I rely a lot on tegaderm.  Usually three sheets secures my IV without tape and gives us a spot to stick the bone, which is the peanut shaped part that holds the loop of IV tubing.  The adhesive on the bone is particularly nasty stuff for me, so it is important to rest that on something other than me if possible.

Some pictures of different placements I have had for some reference ... again in the interest of full disclosure, I made some of these black and white because if you look closely you could see some blood in the catheter/hub area.  I know that may really bother some people so I removed the color.  We will talk a little more about blood in the IV in the next post.

Once they have secured it sometimes they give me the stocking, sometimes not.  I like the stocking because it makes me feel like the IV is a little more protected and secure.  It also obscures the view of the IV a little which can help if you or someone you love has some anxiety about the IVs.

Either way usually this is the part where they take my vitals, check the baby (after 24 weeks they listen for heartbeat I am told, currently 23 weeks and haven't had that yet) and wrap up the party.  Then I just do as much sitting as possible so not to bump it or make anything not work.  Speaking of things not working, that will lead us into the third and final post of this series.  I will touch a bit on what can go wrong with an IV and when to pull it.  So check out the post HG & IVs: The Random Stuff.

None of this is designed to be medical advice that should replace the expertise of a doctor.  I am merely sharing my experiences and knowledge, not advising you.  I only call myself a "rocket surgeon," I have never been to medical school of any kind and would recommend you get checked by a real professional in the event you have any actual questions.  That said, if you would like me to clarify some part of my experience for you, please feel free to ask in the comments!

HG & IVs Post 1: The Supplies

This is the first post in the HG & IVs series.  If you found this on accident, super!  Follow the links to move to the next post in the series, or head back to the intro post if you want to know what to expect in this set of posts.  If you are looking for the HG Treatment Series about subcutaneous Zofran or Reglan pumps go here for the intro post to that.  

Before HG and regular IV therapy getting boxes in the mail was exciting.  Now, well every Tuesday my FedEx guy waits for me to haul my pole to the door so he can drop both of the 30 lb boxes inside the doorway instead of leaving them outside -- because he is nice and pities me LOL

This is the first set of stuff I got, including my pole.  Its slightly less stuff now, but not by a lot.  I get that many bags of fluids weekly.  

To begin with, I had to get sick enough that my doctor evaluated I needed fluid treatment, this was assessed at the same time I was prescribed the pump.  I know that home fluid treatment is not normal everywhere, so I am incredibly grateful (no matter how much grumbling I may do about he IVs once I have them) for the option to not need hospitalized to get the fluids I cannot take in otherwise.  Once home health was ordered IVs at home became an option that I could simletanouely utilize with the pump.  It has made one heckova difference.

I know I need an IV based on part of the info I have to check in with my nurse regularly with.  One of those stats is my ketones.  Ketones are something your body produces when it has to start eating itself to replace the calories you aren't getting otherwise.  Essentially they are a warning bell for both starvation and dehydration and you don't want ketones.  You test them with these little pee tests.

Figures, you got into this pregnancy by peeing on sticks and eagerly awaiting the color change ... why not do it the whole bloody way through?  LOL

{Side Note: They sell stuff like these on Amazon but know that brand makes a big difference.  I have another brand not provided by my home health care company and it routinely rates my ketones worse than the brand in the picture.  One is clearly more sensitive than the other, which is important to note in case you are using them and getting results that do not match your symptoms.}

So if you have anything lower than a 2+ my home health care company won't freak out.  But if I am at a 2+ or more according to the side of the bottle I need an IV.  Generally speaking, if I am well hydrated, I am capable of eating so the IV is a helpful tool no matter what.  

The IV itself has two main parts: the pole part and the arm part.  The IV pole is a slightly flimsy little cart that collapses down and has the most pathetic little casters on the bottom that don't withstand much regular use.  The pole is needed though, as my IV is gravity fed it has to stay up high so that pressure draws the fluid down the line into me.  If the bag gets too low ... well that will be brought up in the last post of the series.  The bag hangs on the pole and I control the drip rate with this little knobby dodad.  

Usually they have it set to 125, but when I first get it "installed" sometimes I get a bolus (AKA boost dose) of 165 of sometimes even on "open" for a little bit if I am really dehydrated (like if my ketones are at a 4+).

Prior to my nurse coming out to "plug me in" I get out these supplies:

Once all of those are out I just wait for the nurse they send out to come and hook me up.  The home health care company and the nurses who come actually "install" the IV provide all of these supplies.  I do not "buy" them (I am provided them and pay insurance costs) myself, technically.  Given the nature of medical care int he US I certainly pay for them. LOL

Once I am hooked up I am independent with the IV, but that is for the next post.  Click here to go to the next post in this series, HG & IVs: Getting Hooked Up.

None of this is designed to be medical advice that should replace the expertise of a doctor.  I am merely sharing my experiences and knowledge, not advising you.  I only call myself a "rocket surgeon," I have never been to medical school of any kind and would recommend you get checked by a real professional in the event you have any actual questions.  That said, if you would like me to clarify some part of my experience for you, please feel free to ask in the comments!

  

HG & IVs: Everything I wanted to know ...

Intravenous Fluids.  Before this pregnancy I had maybe 5 times in my life needed an IV?  The number was only that high because I had given birth twice and used to struggle a great deal with migraines, which often led to ER visits and occasional IV as part of the treatment.  Point being, like most people, I rarely had an IV.

I never had looked at my husband and said the words "oh this will totally be a three bagger before I feel better."  I had no idea what infiltration meant, or how many jokes I would make about "pole dancing" because why would I?  Now, now I know.

I have had more IVs than I can count.  My phone often tries to autocorrect "I've" to "IV."  I have presently been on home health care for nearly 60 days and the longest period of time in that 60 days that I made it without IV was 6 days.  My longest lasting one was 3 days, shortest died in less than 12 hours and meant I needed another one immediately.  They are lasting me less and less long now, so 2 days is really the maximum I can hope for out of an IV before it goes bad.  So we are talking 20ish IVs, easily.

Because IVs are rough on the veins of your arms/hands when they become common, I am presently being evaluated for a PICC line.  In the event I need one, I will certainly write about it too, but at present I want to just add to the HG Treatment series with info about plain ol'
IV fluids.

No pictures of me getting an IV here, but plenty of pictures once I have them and I think I have a picture of a site immediately after I removed one (yes, I did the removal, but we will get to that).

Like in the Pump Series, I am just going off of everything I think I would have welcomed a heads up on before the process started and for the sake of not being too monotonous I will break it up like this:

HG & IVs Post 1: The Supplies

HG & IVs Post 2: Getting Hooked Up

HG & IVs Post 3: The Random Stuff

So follow those links, or click here to head to post number one!

None of this is designed to be medical advice that should replace the expertise of a doctor.  I am merely sharing my experiences and knowledge, not advising you.  I only call myself a "rocket surgeon," I have never been to medical school of any kind and would recommend you get checked by a real professional in the event you have any actual questions.  That said, if you would like me to clarify some part of my experience for you, please feel free to ask in the comments!

The Maternal Fetal Sporran Wearing Update

Just a medical update here, we are still hanging in there and fighting the good fight.

I had another appointment with my regular OB after the last one where cereal and crackers were suggested.  Proactive healthcare is always important, but with HG where things can change so rapidly and it is about more than just you?  Then it is critical.  I was hopeful that this appointment would make me feel better and it did.  He basically admitted not knowing what to do with me and sent me to a maternal fetal specialist -- commonly referred to as a "high risk" OB.

So I was a bit nervous heading into that appointment.  There is something just so intimidating about something people call "high risk" even when everything prior to that was all good news about the baby.  I am the problem here, but her status could change at any time and that fills me with my fair share of anxiety.  There was also the tension of knowing that my OB had politely tapped out and was willing to just keep me going as I am, so this doctor was where my hope is resting.

The way this office operates I came in and filled out my novel of paperwork then had a looooong ultrasound.  Baby girl, whom we have been calling Pinkie Pie per the Beans, looked great and spot on her gestational age.  Some of her measurements were a little small and I have never had a "small" baby so that made me a little uneasy, but no one else is concerned and it is still early for any worry.  She stubbornly refused to turn but had no shame in giving us a clear "I am a girl" shot.

The "bad" news is that my amniotic fluid is pretty low.  I have never had that issue before, so I did run to google and have three heart attacks already.  Being informed can be such a double edge sword.  You would think I know better but, nope.

Then we sat in this room with a crazy comfy recliner for me ... I would have happily stayed there for hours if they'd let me be.  My endurance is down a LOT so all the moving around it took to get ready, get there, sit in their waiting room, have the ultrasound, etc.  It was a lot.  But we had to move after my vitals were taken and we went to his office.  I started to feel a little more nervous now because no one had really told me anything from the ultrasound yet.

The doctor came in and one of the first things I noticed was that he was wearing a sporran.  For those not sure what that is, here is a picture ...

Wait ... what was I saying?

Oh yeah, *ahem* the sporran is the bag thingy around his waist.  For as awesome as it would have been (for me anyway, Paul Bunyan may have thought it was a bit unprofessional) the doctor was not that guy's twin, and his sporran was more like this though much more worn and had no tassels.

You may recall my love of all things Scottish, so the sporran totally made me smile and put me at ease.

Ultimately, we decided to try prednisone first.  I go back in two weeks, my fluids and caloric intake need to be a lot better for him to be happy.  If they are, then I am on steroids for 18 weeks.  Not ideal, but less invasive than the next (and what everyone refers to as the last) option.   He is also running some bloodwork for my thyroid to make sure it is doing what it should be.

No, that had no topical value, but I wanted to make sure you knew what a sporran was and figured two more would help.

Anyway, I have two weeks on the most vile tasting pill I have ever tried to swallow.  If it helps, great, I take it until this kiddo is born.  If not, we have one more option (a PICC line) and we will cross that bridge then and there.  Ironically, there must be some degree of regional preference because I know within my HG support group many women are baffled at my doctors' caution at just taking the leap and doing a PICC.  Everyone is aware of risks associated with them but they seem to be more common elsewhere.

So I see the normal OB next week, the high risk sporran toting doc the week after and we go from there.  On wards and forwards!

Outside of that, I recently discovered that one of my posts here had been shared within my HG support group on facebook.  It made my day.  If you have come across any of my HG posts I hope they help you, it really does make this seem less isolating and frustrating to know that it may help or educate someone to read any of this stuff. :)  If you need info about subq pumps here is a post that starts that series, and if you want some smart arse takes on HG in general I have a few options for you here, here, or here.

and suddenly she is real

I had to wait to post this story, I had wanted to share it sometime ago but could not.  See, we have known we are having a girl for a while now, I had blood work at 12 weeks because we have a family history of chromosomal abnormalities.  Amazing what they can do now, really.  But at 12 weeks even though visually on ultrasound there was no way to tell, the chromosomes could.  It is a girl!

A few weeks later I was reading in my HG support group on facebook and a woman shared an article she had written.  This is that article.  This is the resulting story.
____

I knew, early on.  I was terrified because in both
of my losses I was convinced they were girls, I was terrified of another angel.  I was also terrified of having a daughter, but that fear was a completely different kind and so much less paralyzing.

But I knew.

At twelve weeks we found out for sure.  This pregnancy would give us a daughter.  She had made it further than either of her sisters had, all signs point to her making it.

Assuming the HG doesn't yet take either of us.

But it just didn't feel real.

I had felt my second son move at 14 weeks.  He started moving regularly by 16 and hasn't stopped moving yet at 3.5 years.  But I haven't felt her, not yet. {Note: I was 14.5 weeks at the time of writing, not feeling her is totally normal.}

Despite vomiting more times than I can count, despite battling dehydration, undernourishment, weakness, and the emotional roller coaster that accompanies all of this ... she didn't feel real.

Emotionally I had not connected with this pregnancy at all.  I still harbored a fear that she wouldn't make it, I will harbor that fear right up until they hand her to me.

At 13 weeks I became obsessed with naming her.  I hounded my husband, I needed a name.  Silently I hoped a name would make her REAL.  A name would be one of those happy things you do in pregnancy, I needed joy, I needed normalcy.  I needed real.

But I got sicker and we are still unsure of a name.  I felt so guilty that I wasn't connecting.  I wasn't ambivalent about her, hell I was fighting hard for both of us and wanted her desperately, but I just wasn't connecting to her.  I am not sure I can explain that beyond those words.  The idea of her was surreal, imaginary.  Uncertain.

I was/am having a hard day today.  I actually vomited bile for the first time, pulled some muscles with the force of my illness and I feel utterly awful.  I am waiting for my doctor's office to call me back.  I retreated to my HG forums and facebook support groups because there I could cry about how sorry I felt for myself to women who understood me and wouldn't give me the well intended but hurtful advice others would.  One member of a group had shared an article she had written regarding the recent re-diagnosis of the Duchess of Cambridge with HG and the resulting comments in the media.  She shared her story and discussed at one point in the article that while she and her daughter had battled HG and won once, her fear of HG coming back to claim her daughter in 20ish years was very real.  Apparently for women who's mothers battled HG, the risk of their having it is much higher.

Suddenly, it hit me.

I burst into tears and actually cried out "oh I am so sorry baby girl!" to my belly.  I wept for my daughter ... I emotionally connected to her, about her, with her.

Now, I will honestly tell you that I resent that the object of our initial connection was HG, but it was.  The thought of my child potentially suffering hurt me physically and emotionally.  The realism of that was overwhelming and something I could relate to, whereas the other daughter-things I had tried thinking about made no sense to me as I have no experience with them.  This, well this I have experience with.

While it is a gift to finally feel she is real, and it is a process to be honest, it is a curse to know she may someday deal with this too if she has children.  All I can do is pray she is spared, a cure is found, or something along those lines.

But now she is real.  She is mine.  We will get through this, a hard battle though it may be.  But I have a daughter, and I am not letting go of her for anything.

HG ... when you already have kids

Logic and motherhood, in my experience, rarely collide.

That could not be more true for me lately.  With how consuming my own health saga has been, I have a hard time not relating everything in life to it right now.  I thought I was the only one with this obsessive focus, and it made sense to me because what else do I have to do other than think about what I can't do or focus on the little, yet monumental task I can do -- grow a person.

But I am not the only one who has taken this whole journey to heart.

Recently the Beans has become obsessed with drawing.  He carries around a "handy dandy notebook" and seeks Blue's Clues all the live long day, and I may be prejudiced but for three he is pretty good.  Like I can recognize what he draws, usually with ease.

So when the other day he proudly told me that he drew his best friend, ME, I nearly choked up on maternal hormonal overload.  Then he showed me his precious drawing ... and it was like all his others, I could easily identify what was in the picture ...

Me.  With an IV and subcutaneous infusion pump.

Oh and bangs, I have messy hair and bangs.

Pretty accurate picture of me as of late.  In fact, it could pass for a photo except that my arms are entirely absent in this rendering.

Truth is I kept it and always will.  It is a precious representation of what he can do ... it also brought some other feelings to the surface too.

HG is pretty crummy all things considered.  In the interest of full disclosure I wrote three other words in place of crummy first and deleted and slowly stepped up the censorship each time.  My life, as I knew it, has stopped.  Nothing is the same.  I do not do anything the same way I did 5 months ago, I do not think in the terms I did five months ago and I certainly do not look like I did five months ago and that ain't just cuz I have the prego gut going on. Some of those changes will never leave me, some have a definitive time stamp, and while I hate giving HG credit for anything good I do suspect that I will be a far better person for having survived this.

All that said, I feel like the biggest failure as a mom, wife, person right now and that picture both was a positive affirmation and a damning bit of devastation ... didn't mean to rhyme there but lets run with it.

My child has not missed the pump, the IV.  I have actually been rolling my eyes a little at how similarly Beans seems to see me.  He still demands stuff of me, still has the same three-year-old standards even when I cannot meet them.  I joked the other day when he suggested that I clean up his toys that the IV pole was completely invisible to him.

Its not like I actually thought it was, but the fact that he drew a picture of me and didn't include clothes OR arms but did include the pump and IV ... its a part of me.  He sees it as a part of me.

That ... stings.

I was feeling a little awful about it.  I was dwelling a bit on how I haven't made dinner in an eternity, how exhausted my husband is, how independent my children have been forced to become, the fact that Meatball asks me about my ketones in the morning, how I have done jack doodle with kid's school, how messy the house is ... I can't even just be pregnant right, I have to be debilitatingly, freakishly, starving to death while vomiting bile and dependent upon modern medicine to even have a freaking baby.  Um, fail.

Feeling totally worthless and trying to pull myself out of the dark slump that seems to always be looming in the background I took a deep breath and thought about finding the humor in this.  Its what I do, it is what I blog about 99% of the time.  HG is like having the Nothing from Never Ending Story follow you everywhere, it is easy to feel isolated and depressed in the middle of your body failing you so miserably and at a time that should be filled with joy.  If I don't actively fight that dark pull, it will get icky up in here fast.

And I looked at that picture again ...

I'm smiling.

I have a huge grin on my face.  He may have included medical contraptions and completely ignored my arms ... but he drew me with a huge grin.

So while my illness is not invisible to him, my attempt to remain positive IS visible.

I believe it is okay for our children to see us falter or have weakness.  I think it is important actually, for them to see we are human and I think it is even more important that occasionally they know moms and dads have to struggle and fight for something.  It lets them know that it is normal and valuable to do so, enableing and empowering them to do the same some day too.

Beans and Meatball see my struggle.  They know this is hard, and they know that we will get through it.  They know that there is a light at the end of the tunnel and that is a precious gift indeed.  They also know that I smile and fight.  That is also important.

This may totally suck right now, but like I just said, there is a light at the end of the tunnel.  When we get there I won't have an IV or pump, but I will probably still have messy hair and bad bangs ... and a smile ... and three kids instead of just two.

And that is the greatest gift of them all.

our gender reveal

If I based my life on Pintercrack I would be neurotic and know that I am a failure at most things when compared to the talent that is out there.  Five seconds on the site and you know you can't cook, can't refinish furniture, and can't re-purpose stuff in a cool way anywhere near good enough to be considered crafty.

Gender reveals, in all their awesome balloon and cake color glory, seem to fit right up there on mandatory boards everyone has even if not in that life-stage.  Its like weddings, even single or 20-year-happily-married people have chic barn house style wedding pins somewhere.

But between how I have been this pregnancy and how much I am not gifted with the Pintercrack gene, I wasn't about to bake a pink or blue cake.  Instead I went shopping.  I bought some clothes themed in the right color, a box with a cute label already on it that I just had to write on (thank you Target, I will love you always for making one stop shopping possible!) slapped it all together and BOOM, we had a gender reveal.

Simple, and I think cute.  This once I will share pictures that include my kid's faces, because ... well, their reactions were priceless.  Again, recalling how not super duper I have been feeling I wasn't so thorough as to get them dressed cute or have a cute background ... something I am sure I will regret yet forgive myself for later.  Life is all about choosing battles, and that wasn't a battle I was up for after a run to Target when I barely make it out of the house anymore.

So without further ado ...

This is the outside of the box.  Target had the blue box with a chalkboard tag on it already.  I just used metallic Bic markers I already had to label it.  Then I bought the pink ribbon and bow also at Target to make it be both pink and blue.

That is Meatball and Beans.  Yes, Meatball is holding Beans back because I wanted one before picture.  Picture quality diminishes greatly after this because they went FAST!

Remove the bows and stuff ...

Take a peak inside ...

Meatball is thrilled ... Beans is processing ...

Now we are both excited!

Celebrate a bit! Oh but wait, what is it, a boy or girl?

Its a little sister!

That is what the inside looked like when they opened it.  This is also how we did the gender reveal to our parents so they saw the same thing.  

Under the #1 little sister onsie were some other onsies I found at Target.  I think the sister onsie I had bought already somewhere else, but I wanted there to be more in the box holding it up.  So I suffered greatly and bought some of my first pink stuff.  ;)

And here she is ... Beans has named her Pinkie Pie.

He also calls her Dookie Bus, but I am sticking with Pinkie Pie and pretending that other name didn't happen just yet LOL  So it is a girl, many of the theorists were coincidentally right, which has less to do with her being a girl and more to do with the nature of HG in general.  Either way, we are pretty excited here.  

P.S. If you are curious why I suddenly started watermarking my pictures I will explain in an upcoming post.  

HG Treatment Post 4: The Tips & Tricks

Living with "Robin"

This is the final post in my HG series on Zofran/Reglan Infusion Pumps.  To see the intro post, which will list all other posts in the series and link you to them, please go here.  If you are here because you are about to start a Zofran/Reglan Infusion Pump, don't worry!  For all the garbage that may come with them, it is by far better than the crippling illness that HG is.

So here is the last (planned) post in this particular series.  I am hoping to slap all the little tricks and tips in one place.  Both for ease and brevity of the other posts.  I suspect this one may get edited and added to a few times, so if you are reading this and have something you think may need added please mention it in the comments!

The tips are specifically about the pump and treatment of HG with the pump.  All other HG related stuff you can find in the search bar, in the menu bar or using one of the tag words over there on the right.  ------>

Medicine & Supplies:

• Have a spot for all your non-refrigerated meds to keep them together.  
• Have a spot for all your medical supplies (orbits, flushes, IV bags, alcohol wipes, etc ...).  
• Have a spot in the refrigerator that is for YOU.  Your meds and safe foods or drinks if you can.  That way you only have to hold your breath and look in ONE place, disregarding all the vile foods your loved ones are still consuming.  
• If you are on lots of prescriptions at once take pictures on your phone of each before any doctor appointments.  They always ask and I can't keep all this crap straight so I just whip out the pictures and can tell them all the details with little effort.  
• You can take a demand dose of medication with the pump if needed.  Ask your doctor or nurse about it if you are having a hard time.  Just note that a bolus of meds can intensify any of your reactions to that medicine.  

You get lots of mail.  It just isn't FUN mail.

General:

• Have a Notebook.  Just a special pad of paper for your HG stats and nothing else.  When you have to call your nurse they will want various stats on a regular basis from you.  These may vary on your needs (for example if you have BP issues or have GD they will need stats relevant to your stability with that).  For me they always wanted to know the following stuff:

1. Ketones today
2. Weight today
3. Fluids drank in last 24 hours (regardless of what stayed down)
4. Percent of pre-pregnant diet that I ate in the last 24 hours (regardless of what stayed down)
5. Number of times I vomited in the last 24
6. Number of dry heaves in the last 24
7. If I was nauseous more than 6 of the last 24 hours
8. How my infusion sites are doing
9. How my IV sites are doing (if I have an IV in) and how many bags of fluids I have had in 24 hours
10. Any reactions to the medication?  Headaches?  Feel baby moving? Anything worthy of me wanting to comment on it (like if I am in pain or having some kind of new weird symptom)

• Having all of that ready to go in one place is valuable for both me and the nurse. I also have a document of it for my own records to take to the doctor.
• I also keep any IV bag changes, pump changes times in there too so I can make sure my rates are what they should be.  For example, my IVs suck and die fast.  When I remember that I have a new bag at 7:00 AM I can do the math and see that there is a huge problem if I am barely a third into it by 1:00 PM.  

Constipation:

One of my bolus demands.  I am on the max does of meds I
can tolerate, so I generally do not do this much.  

• Take something.  Ask, beg plead from your doctor for something medicinal to help if you are on Zofran it is simply irresponsible to take nothing for constipation.  
• Use a stool under your feet. If you don't believe me when I say this well help, feel free to google "GI health and elevated feet or squatting" and prepared to be dazzled by lovely cross sections explaining WHY it works.  Personally, I'd be cool taking my word for it -- it helps.  
• Suppositories hurt like a mother !@#$er.  The box won't tell you so, but OMfreakingG they made me want to die. 
• Tucks pads.  Get them.  Keep 'em in the fridge for added coolness.  
• Talk with your doctor or nurses about how bad it is getting, constipation is potentially very serious if you don't get relief in a reasonable amount of time and you may need medical help. 
• Don't kill people when they tell you to eat watermelon and other water rich foods.  Categorize your shows of restraint here right with the people who "cracker" and "ginger" you and consider the money saved in bail as a nice savings for buying yourself something special after the baby is born.  

Site Issues:

• If you are getting red welts, sore areas, warm areas, etc: Describe them to your doctor/nurse team to make sure it is nothing serious.  If it is "normal" then try heat and or ice to help relieve the pain.  Some people find greater help with one versus the other, some people need to alternate.  
• My nurses recommend "warm moist heat" like a washcloth that was in really warm water.  I found this both annoying and uncomfortable/short lived.  I also dried my poor skin out this way even more.  So I used a rice sock, worked much better.
• Benadryl can help site reactions, ask about it.

Day to Day with the Pump:

• How do you sleep with it? I spoon it with it resting on a pillow that I cuddle with and curl around.  Some people leave it on a nightstand because the tube is pretty long. Some people hang it from their headboard somehow.  I also use a lot of pillows to prop myself into position so I don't roll.
• Showering?  Easier to leave it off in my opinion.  This said keep those showers quick and careful.  Sit down if you can because you are likely weak and fainting-prone.  
• Hurts to poke yourself?  You can go fast, you can ice the area before to numb it, or you can buy these thingies which I am told helps and fits the parts I have.  Double check before buying because they are nearly $30.  This video shows you how they work and it makes sense this would help if you have needle issues in particular.  
• How do I wear it?  Pre-maternity clothes I just had it high enough that my pants were below it and it just came out from under my shirt.  Now that I am in maternity clothes, I turn the tubing to face up so that the tubing feeds out of the top of my pants.  I almost always wear my pump in the purse thing on my left side across my body.  So it hangs on my right shoulder cross my body with the pump is on my left side.  See the picture that I cannot believe I am putting on the internet LOL  (and no, I did not edit it, that is the selfie setting on my phone)

• When the catheter is on my right side I just aim the tubing to my left so it still comes out my left side of my shirt to lessen the chance of the tubing getting caught on anything.
• If your tubing gets caught it will terrify you at first, but its really not as big a deal as you think.  Chances are it will do nothing, but if it pulls it will just pop the snap piece from the tubing off, leaving the part IN you untouched and unharmed.  Just snap back on.
• P.S. In the above picture of my 19 week pregnant gut you can barely see the lines left from the tubing resting against my skin and if you look really closely you can see little spots.  Those spots are my old Reglan sites.  Compared to the giant red welts and bruises that Zofran left me with my tummy looks about a million times better.  

That is everything I can presently think of.  If you have any questions please feel free to ask.  I do not have a PICC line and my IV is gravity fed, so if you have an IV or medicine infusion via PICC I cannot provide you with any BTDT ... yet. I might at some point, but I do hope to avoid it.  I will be working on a post or two about IVs and hydration soon too.