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.   

get the memo, Baby!

Not like consistency has ever really been MY thing, but I have been bad about maintaining any kind of schedule with posting.  Its hardly surprising, but it does annoy me.  It ain't looking like it is going to get any better though.

A week ago I got an infection in my PICC line.  It was pulled as soon as my white cell count confirmed infection.  It has been rough without it in some ways, but I have honestly been proud of how stable I have managed to keep myself and things were looking okay.

Then I had another doctor's appointment yesterday.  Baby Pinkie Pie went from measuring beautifully and hitting all the milestones she needs to, to being labeled an IUGR baby (intrauterine growth restricted).  Fancy acronym for "small, too small" baby basically.  I also learned that BPP stands for biophysical profile because I will be having one of those a week i
n addition to NSTs (non-stress tests, but I at least knew that acronym).  So I am now at the doctor twice a week and one failed test or lack of enough improvement from one week to the next means baby time.

I handled the news great in office.  It was about 3 AM that I suddenly realized how much I have to do and how much I can worry about.  Needless to say it was not a restful night.

While I am unable to DO a whole lot because I am sick still and weak, I am very much in planning and working mode.  Nesting times a bajillion yo.

The good news is that we are 33 weeks and my next BPP (which is the test I worry about "failing" more than the NST at present) will be at 34 weeks.  That is a good marker to hit.  Every week is a GOOD thing at this point.  I have been saying that I just want to get to March and that is still a great goal, but we will just have to take it day by day at this point.  Irony being what it is the little stinker could still make it to her due date and just give us a stressful last 7 weeks.  Ideally she will.  Sheesh.

Since I can do nothing for her technically, I am focusing on making the hospital bag, overnight bags for the kids, and getting a car seat picked out so we have the bare minimum stuff covered.  Everything else will work out and be fine, but I kinda have to figure that stuff out and I am lucky to know that with advanced warning.

Not sure how well I will post, but I do know that I *like* getting to write when I am worried or stressed.  So, hopefully I will get to do that a little better because it will help my sanity.  Even doing all the tedious explanatory PICC posts will help me, and I find that I share my posts in my support group more than I anticipated so I want those done in case they can help put another mama's mind at ease.  Pregnancy, parenthood, is unpredictable and overwhelming enough on its own.  The moment you add complications it just makes it even scarier and while it is cliche, knowledge IS power.

So fingers crossed I have lots of regular posts about baby still cooking and growing in addition to all the other stuff I have wanted to post and just haven't gotten to yet!

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.

The Sporran Sportin' Update

I mentioned in this post about seeing the maternal fetal specialist and had a itty bitty tangent about his sporran.  Well, we went back for our two week later follow up and he was sporting a different sporran which makes him even cooler in my estimation because clearly this is a regular thing and he rotates them.  Awesome.

Anyway, the appointment was awesome and also kinda bleh at the same time.  The great news is my amniotic fluid levels were up and within normal range.  Even greater news, baby Pinkie Pie is measuring two weeks ahead of schedule, which does not change my due date at all because we know her age, but it means she is growing exceptionally well in spite of everything.  I just don't make small babies.  Good, but still makes me sigh knowing the impending fun to come. 

Anyway, she looked fantastic.  Still stubborn on allowing pictures, but all the data from the ultrasound was great. 

The bleh news is that the doctor feels that her awesomesauceness is due in large part to the fact that in the last 2 weeks I have had three IVs.  This means that her and my success is so dependent upon IV fluid treatment that he felt it would be irresponsible to hold off on the PICC line any longer.  I will be going in for that on Monday, December 8th.  So fingers crossed that is an easy process.  Did you know you can google for videos of PICC line placements?  Yeah, you can.  I have it all cued up and will watch it shortly, haven't just yet.

Beyond that, I get a growth scan every 3 to 4 weeks and will just keep on going from here.  The doctor did discuss that in cases like mine he doesn't talk about due dates he talks about targets.  Our target is 39 weeks.  It may be less, it may be the actual due date.  No way to know now, have to see what happens with the PICC line and my success at that point.  So fingers crossed on that too.

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.

Pregnancy & Pintercrack

I am so bored.

I am so nesting.

My husband is doomed.  At least his sanity is.

This pregnancy has been a unique experience for us, full of unique challenges and learning experiences -- says the girl typing this blog posts with an IV in her arm.

I have always been an obsessive compulsive nester in my pregnancies, and I do not use the term loosely or as a joke.  It is compulsive, as many of my unique little NEEDED behaviors are LOL.  Nesting is sorta perfect for my OCD tendencies (I do not have the full blown disorder) and ADD.  I cannot sustain the overly ambitious projects I launch, and I don't need to with nesting projects.  They are shortish termish.

But what do you do when you can't?

Well, you make yourself (and your long suffering husband) insane.

My house is *shudders* horrible.  We intend to move before this baby really has a room of their own anyway, so I never planned to do a room here for him or her.  Now?  Now I am infused with the need to.

I need to clean.  My wash is piling up.  Despite Bunyan's best efforts you cannot remove my ability to do everything I was doing from the scheme of things and maintain this house.  In a way it is a little affirming to realize how important I am in the functioning of this home and family.

Its also hell on earth when I can't do anything.

So I have begun trying to find ways to fulfill my desperate need to DO something and combine it with my complete inability to do much.  I mean how much cleaning can I do when my BP is a hawt mess, I am constantly weak and sick ... oh and the stupid IV pole.

God bless Pintercrack.  I have officially taken pinning-with-no-intention-of-execution to all new heights my friends.  I have a board about knitting, its hilarious.  I have a board about quilting.  I can't quilt, and I have no real intention of learning to.  I have a ton of pins for organizing my minivan ... the one I don't own.  Yet.  My dignity is marching up to that guillotine soon enough.  I have a board devoted to balloon stuff, I have a life threatening latex allergy and could never want this stuff.  I even have a board for Tom Hiddleston.  Basically, I have a board for anything that is NOT food.

I can't do food.  Not for like another five months.  (I have food boards, lots of food allergy related ones, but I just don't look at them now.)

In all of these random obsessive searches to compose boards thoroughly versed in awesomeness I came across the granddaddy of OCD and ADD in planner form.  Erin Condren.  I have always had a thing with planners.  I have lots of them and I have tried a million types of them, usually to find that I am caught up in the fury of the moment and have like this totally awesome month ... then never stick with it.  I need something that will captivate me in more than one way and will actually visually keep my attention.  Granted, these ain't cheap so this is a gamble in light of my previous failings with sticking with ... well, anything.  But here's hoping.  I figure with the fact I may have another 5 months of butt-sitting I might have all of my 2015 planned out and should get at least some use out of it.

Of course I made a board about it too.

Online shopping was a bad thing to discover though.  I wound up purchasing the planner and some accessories from Erin Condren.  Then I searched Pintercrack for ideas ... because that is what I do these days.  There where whole Etsy shops devoted to stickers, inserts, and washi glory to feed my fire.  So I spent some money there too ... then I realized Etsy is like a goldmine ... eventually I purchased a whole new wallet for the envelope system we utilize (the irony here being we do it because it saves us money! Ha ha ha ha ha!!!) and a bunch of baby stuff before I curbed my need.

I sat back and happily smiled at my tablet thingy, feeling sure that this binge of organizing based purchases would keep me content for a while, I would be good to go!

Wait ... I just made a bunch of custom orders.  CUSTOM.  This ain't Amazon people, with free two day shipping.

Sigh.

I bought much of this stuff weeks ago.  I am still waiting for the perfectly reasonable shipping times that the shops clearly stated for them.  I am the moron, they are doing their jobs and many of them are doing more than one job.

So I threw myself into the HG Treatment Series for a few weeks.

Now I am done with that.

So I am pinning quilts and minivan organizers and wondering if I will get unsick of the mundane soon.  I used to think I would kill for nothing to do ... it is nice for like two weeks friends, then when you can't do anything you start wanting to climb walls (but can't) and talking to yourself even more than you did.

Yeah, my sanity may be a thing of the long gone past by the time I have this kid, not to mention my husband's.

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 2: The Pump

This is the second 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 an 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 this is the pump.  The device that actually holds and administers your 24/7 medication.  It is quiet as long as your med syringe is full and in the right place, and the batteries are good. In those cases it will beep at you, but I don't actually hear it running otherwise.  You wear it in a purse thingy, which you will see a little bit later in this post.

This is the pump in its little pouch.

Here is me with my bump and the pump, like 17 weeks along.  This is how I wore it, they tell you that you can wear it like a fanny pack, but my dignity and expanding waistline made this impossible to consider.

I had it like 3 weeks by that point and was more than used to it.  I had also named it Robin because it was my trusty side kick.

A nurse from the home healthcare company my insurance uses came out to teach me how to use it.  They give you packets of info and walk you through each step, it seems intimidating but it really isn't.  It feels like a ton of steps, but really it isn't.  You get used to it within a week and are a pro in no time. Ask all the questions you want to, your nurse is there to help you and will not judge you.  Even if they do judge you, who cares, you need to know this stuff!  Ask questions and keep asking until it makes sense to you.

The pump itself has the following relevant parts.

The screen display is easy to read on mine.  A monkey could do this -- or a violently ill and seriously weak pregnant woman, whichever you happen to be.

I only use my info button for two things 99% of the time.  First, I hold it down to lock and unlock the keypad, that way I don't bump it and accidentally stop the flow of medication.  Second thing I use it for every few days is to check the battery.  Simple.

The plus and minus arrows are not something I use unless I have to call the nurse for a demand dose.  Even then I rarely need it because it is just there to adjust the amount I get which I have personally only had to do once.  The nurse who came out to my house did all the set up when I initially started and when I changed medications so I did not need to actually set my pump up.

The green button, or yes/start button is what you push to start your pump or to agree to something.  Inversely and equally obvious, the stop/no button halts the flow of medication or is the no command if you are doing something.  If you have to actually DO something, like a demand dose of medication they walk you through it over the phone or in person.  It is really simple even if you are sicker than a dog.  You will need to use these buttons independently when you have to change syringes when your meds run out.  (See this post for that.)

The FF and Back buttons move the syringe's plunger pushy thing.  Technical term, of course.  You need to use that when you load a new syringe.

Last is the on/off button and I think that you, even at your most nervous and unsure can figure that one out.

On top of the pump is the arm that holds the syringe in, the bed the syringe sits on, and the plunger pushy thing for the syringe.

So here is the pump ready for a new syringe, old empty one still in there ...

Here it is empty, ready for a new syringe ...

The tube coming off the syringe is part of the "Orbit" set.  That is the next post and the one that may be freaking you out the most because you have to poke yourself.  Again, not as bad as it sounds.

You wear the pump in this little case thingy on a day to day basis.  As the pump costs like $5,000 to replace I advise keeping it in that silly case.  If you want to leave your pump on and shower they give you this clear case.

For the record, that is the first time I put it in there.  It is awkward and the $5k price tag scared me, so I always time my showers with syringe changes when I can.  You do have to be careful though with this plan, I have made myself violently ill being off the pump for too long.  It wasn't pretty at all because I was on Zofran so my body wanted to fight the vomiting but needed to do it ... I will spare you deets, but it ranks as my WORST puketastrophe as of yet.  You are not allowed to submerge an infusion site that is in uses, so no baths or swimming.  Bummer, floating in water can be so soothing for me.

Anyway, those are the parts in post four I will talk about some tricks I have learned with the pump (like how to sleep with the damn thing).  For now, we move on to the part you may be dreading the most ... the catheter site, or in other words, the part where you have to poke yourself. (Spoiler, it is no where near as bad as HG so hang in there!)

Next post in the series is here!

HG Treatment Post 1: The Meds -- Zofran and Reglan

This is the first post in my HG series on 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, we go, right?  The meds.  While this may not be the first post in the series that you clicked on if you are set to start a pump -- because let's be honest you wanted to understand the pump and the poking-yourself part, amIright? -- it is in no way unimportant.  In fact, I slapped it as the first of this series because I would happily argue that the meds are the most important component you need to understand if you are walking on your own (or supporting someone through) hyperemesis gravidarium journey.

Initially I started on oral Zofran.  The pills were actually the generic Zofran, Ondansetron, which some people react to differently than the name brand stuff.  It certainly helped me a little, I felt better but it wasn't enough.  After 2 weeks I called my doctor's office miserable and dehydrated because I couldn't keep hardly anything down.  I wound up having a ketones level of 4+ which is the worst on that scale.

I was also miserably constipated.

A quick word about Zofran and Ondansetron ... the constipation you most likely will experience will be extreme.  Pills OR infusion pump.  Seriously, I made my nurse choke one day when I checked in over the phone by describing it as "pooping glass shards, assuming I am lucky enough to actually poop."  I joked here about how desperate the constipation got.  While I joked, eventually I was genuinely worried I was going to cause some kind of permanent damage to my body, even with colace three times a day.

It only got worse on the Zofran pump, mainly because the amount of meds I had increased.  I tell you this not to scare you, because you may not be as bad as I was.  I tell you to prepare you.  A friend who had HG and was on Zofran joked with me that she wished she could have taken the pills with a milk of magnesia chaser.  Seriously.

Example of the redness around a catheter
site.  Not the bet picture but it gives
you an idea.

So when the pills failed, I went to the Ondansetron/Zofran pump.  Then it got really miserable (for ME, don't panic if you are reading his and about to start Zofran).  Aside from the constipation, I also was having a nasty reaction at my infusion sites, where the catheter goes into my abdomen.  I address the Orbits and infusion sites in post three of this series and I will talk about this there too.  But for the purposes of this post, Zofran is an irritant to your skin.  the sites became very sore and I had to change them about every 10 hours due to the severity of my own sensitivity (I am a freakishly sensitive person though so you may not be as bad).  They would swell and turn hard, get red and warm to the touch.  And they hurt.  Sometimes a lot.  I did use a product called Skin Prep (more in post three) and that helped my reaction to the adhesive on the Orbit.

If you DO have a reaction at the infusion sites (which I have never heard of anyone having no reaction) just know that heat and/or cold will help.  I used ice packs and a rice sock thing I have and alternating between the two helped me, some people have better luck with one over the other.  But, you want to treat them ASAP because it will help!  Additionally, you can technically go two days without changing your sites, but if you are really uncomfortable they will urge you to change more frequently.  The longest I could handle was 12 hours.  Some people may actually get better after a week, so my nurse told me, like their bodies get used to the Zofran.  I was not one of those people.

Between the sites, the constipation, and the headache -- all known symptoms of Zofran for peeps who do not respond well to it, we decided to change to Reglan after 2 weeks on the pump with the Zofran.

The Zofran is the orange syringe. The yellow one is Reglan/Metoclopramide, different medication with different focus but same intent.  Zofran slows the gut, thus in many people reducing vomiting and nausea.  Reglan forces the stomach to empty faster, so the same final hope but different means of getting it.

The biggest issues people have with Reglan are anxiety, depression, and heart palpitations.  For some people this can be crippling and even dangerous.  I was nervous to try Reglan for these reasons, I have a history of anxiety if nothing else.  But I am SO glad I switched.  The infusion sites are nothing comparatively, the headache is gone, and I can *ahem* go to the bathroom with some degree of normalcy again.  My nausea is also much more controlled though it is not gone.  I occasionally feel my heart race a little, but I will happily take that over all the other garbage Zofran did to me.

Bottom line, *I* did not respond well to Zofran, but *I* am responding much better to Reglan.  You may not be the same as me.

I also have the oral Zofran pills to take when I need them, and I take Phenergan at night.  Phenergan knocks me out so it is not a valuable option for me during the day, helps me sleep fabulously though at night.  Additionally, I alluded to Colace before.  I take Colace three times a day, and occasionally I am allowed to swap out Colcae for Peri-Colace.  Colace is a stool softener, Peri-colace is that plus a laxative.  I have also tried suppositories but found that it was a lot of misery for no real result and
diligently sticking to my Colace and trying to get hydrated (mostly buy IV which I will address later) got me past that constipation until I switched meds.  Last but not least, acid production is an issue for HG sufferers and mine is mostly controlled with regular Pepcid AC at present.  

Regardless of what meds you take, speak very frankly with your healthcare provider regarding symptoms and your needs.  There are other oral medications you can take, and some of these may come in infusion pump form.  I have not had a need to move on from Reglan at present.

Looking forward to the next post in the seires regarding the pump, it does not matter which medication you are on.  My pump machinery itself did not change at all.  Just the syringe I stuck in it.  What *I* do to change things does not change between the two.  So if you are reading this and about to start one or the other the info all applies to you unless I state otherwise.

The next post in this series is about the pump itself.