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.   

vaccinations and peanuts

As the debate on vaccinations and the tensions over the measles outbreak continues to concern us all, I have noticed a really troubling (and annoying) little meme or phrase that keeps popping up.  It haunts my facebook feed with a nagging and insidious hidden barb that bugs the crap out of me.

Or this one:

And if it isn't a meme or a cute little graphic, it is an attempt at a witty tweet.

No, Kristen-I-adore-you-otherwise-Bell, it is not a "good point" made by @MotherJones.  I respectfully disagree with you there, though, again, I freaking adore you otherwise.

It is a random, unrelated, unfair point.  

It is an apples and oranges argument, one having very very little to do with the other. It is something within allergy circles that I have seen come up recently, parents really upset by this sentiment who sometimes have a hard time articulating WHY it bothers them so badly.  I wasn't sure what about it bugged me so much first, but I knew I hated it immediately.  The first time I saw it, a meme shared by a friend on facebook much like the Wonka one, I groaned out loud.  

I posted this on my personal facebook page when I was still having a hard time articulating my distaste for the "joke" or "vent" and was met with a lot of well meaning and kind responses.

Most people assured me that those memes were not meant to insult allergy families.  Most of my very pro-vaxxing friends wanted to address the importance of inoculations and how children need protection from these illnesses.  When I discussed it verbally with a friend she assured me that as an allergy mom I am just used to being the butt of a joke and so I am taking it personally when it isn't about me, or my kid, or even peanuts.  

But is it?  And if it is not, WTF is the point of bringing it up?

That ^ cartoon paints me and the anti-vaxxing mom with the same brush, literally and figuratively.  That cartoon illustrated precisely what my underlying nagging little fear was when I saw the meme start to regurgitate itself across the internet with increasing frequency. The implication is that we are both irrational and selfishly overseeing our children's perceived (insert finger quotes and eye rolls here) needs with no regard for anyone else. 

I still find it difficult to articulate though, because I know that the people sharing it when I do try to say why I hate the sentiment will reply with "but that isn't the point."

Well it may not be your point, but as in all arguments, if the ONLY way you can dispute something is by bringing up an unrelated something else then are you really proving anything?

This idea is meant to be witty, biting, and direct.  But it is really none of those things at all.  

Does it bother me that they are aligning me with anti-vax parents?  Yes.  Not only because I personally chose to vaccinate my children to the fullest extent I can (more on that in a moment) but also because not vaccinating is a choice.  A CHOICE.  We never got a say in whether or not a peanut, or milk, or parsley could KILL our child.  No one asked me.  No long-debunked research studies, no famous former Playboys turned parental activist ... I never got to sign a waver for this life.  Choosing to not have your child receive the MMR shot or any other shot is a choice, a decision purposely made.  Food allergies are a life sentence handed to you by fate.

Does it bother me that I am put in, let's be blunt here, the same category as fanatical, uber crunchy, kinda "out there" parents because of this argument?  Yes. Not because of the level of granola in my life, but because that category isn't meant to be a flattering one.  Those parents are instantly dismissed on the grounds of being, I hate the pun, nuts.

Does it bother me that in order to make your point you have to drag my kids into this argument, where they have no real place?  Yes.

Many children, mine included, with food allergies cannot receive certain vaccinations because of the way they are produced.  Some involve egg, some actually involve milk contamination, some children with food allergies carry other diagnoses that leave them immuno-compromised and they are not supposed to get those shots because the vaccination could actually kill them.  My kids get every shot they can have, and I hold my breath in fear for each one just in case because the threat of those shots is not an imaginary one.   

As a food allergy parent we get used to having to field certain questions and sometimes certain annoyances from other people.  It is really hard sometimes to not get really defensive when people are POed about not sending a PB&J to school because it is inconvenient for them while it could make my child suffer tremendously within seconds just to be in the same room.  When I start to think about how defensive, and admittedly, angry it can make me to hear parents complain about "inconvenience" and "annoyance" when these precautions can prevent my kid from dying ... I do begin to see the point the authors of these memes, status messages, tweets and what not are trying to make.  This could kill innocent children.  How can you not get behind something that prevents that?

While I do get it, I really wish people would stop bringing peanuts into the vaccination argument.  Mainly because if you chose to not vaccinate, that is your choice and this is a battle you chose.  It ain't my battle, I have enough of them and want no part in this one. Your on your own here.

The bottom line, either way at the core of any of these points are innocent children.  They are not meant to be banners in your war -- stop using them as such.  Whether your point is "if I can be forced to not send peanuts you should be forced to vaccinate" or "you are just as big of a pain in my ass as those kids are" ... please, stop using MY innocent children to further your point in this debate.  

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 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.

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.