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.