Monday, October 27, 2014

HG Treatment Post 4: The Tips & Tricks

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

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

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

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

  • Have a Notebook.  Just a special pad of paper for your HG stats and nothing else.  When you have to call your nurse they will want various stats on a regular basis from you.  These may vary on your needs (for example if you have BP issues or have GD they will need stats relevant to your stability with that).  For me they always wanted to know the following stuff:
  1. Ketones today
  2. Weight today
  3. Fluids drank in last 24 hours (regardless of what stayed down)
  4. Percent of pre-pregnant diet that I ate in the last 24 hours (regardless of what stayed down)
  5. Number of times I vomited in the last 24
  6. Number of dry heaves in the last 24
  7. If I was nauseous more than 6 of the last 24 hours
  8. How my infusion sites are doing
  9. How my IV sites are doing (if I have an IV in) and how many bags of fluids I have had in 24 hours
  10. Any reactions to the medication?  Headaches?  Feel baby moving? Anything worthy of me wanting to comment on it (like if I am in pain or having some kind of new weird symptom)
  • Having all of that ready to go in one place is valuable for both me and the nurse. I also have a document of it for my own records to take to the doctor.
  • I also keep any IV bag changes, pump changes times in there too so I can make sure my rates are what they should be.  For example, my IVs suck and die fast.  When I remember that I have a new bag at 7:00 AM I can do the math and see that there is a huge problem if I am barely a third into it by 1:00 PM.  
One of my bolus demands.  I am on the max does of meds I
can tolerate, so I generally do not do this much.  
  • Take something.  Ask, beg plead from your doctor for something medicinal to help if you are on Zofran it is simply irresponsible to take nothing for constipation.  
  • Use a stool under your feet. If you don't believe me when I say this well help, feel free to google "GI health and elevated feet or squatting" and prepared to be dazzled by lovely cross sections explaining WHY it works.  Personally, I'd be cool taking my word for it -- it helps.  
  • Suppositories hurt like a mother !@#$er.  The box won't tell you so, but OMfreakingG they made me want to die. 
  • Tucks pads.  Get them.  Keep 'em in the fridge for added coolness.  
  • Talk with your doctor or nurses about how bad it is getting, constipation is potentially very serious if you don't get relief in a reasonable amount of time and you may need medical help. 
  • Don't kill people when they tell you to eat watermelon and other water rich foods.  Categorize your shows of restraint here right with the people who "cracker" and "ginger" you and consider the money saved in bail as a nice savings for buying yourself something special after the baby is born.  
Site Issues:
  • If you are getting red welts, sore areas, warm areas, etc: Describe them to your doctor/nurse team to make sure it is nothing serious.  If it is "normal" then try heat and or ice to help relieve the pain.  Some people find greater help with one versus the other, some people need to alternate.  
  • My nurses recommend "warm moist heat" like a washcloth that was in really warm water.  I found this both annoying and uncomfortable/short lived.  I also dried my poor skin out this way even more.  So I used a rice sock, worked much better.
  • Benadryl can help site reactions, ask about it.
Day to Day with the Pump:
  • How do you sleep with it? I spoon it with it resting on a pillow that I cuddle with and curl around.  Some people leave it on a nightstand because the tube is pretty long. Some people hang it from their headboard somehow.  I also use a lot of pillows to prop myself into position so I don't roll.
  • Showering?  Easier to leave it off in my opinion.  This said keep those showers quick and careful.  Sit down if you can because you are likely weak and fainting-prone.  
  • Hurts to poke yourself?  You can go fast, you can ice the area before to numb it, or you can buy these thingies which I am told helps and fits the parts I have.  Double check before buying because they are nearly $30.  This video shows you how they work and it makes sense this would help if you have needle issues in particular.  
  • How do I wear it?  Pre-maternity clothes I just had it high enough that my pants were below it and it just came out from under my shirt.  Now that I am in maternity clothes, I turn the tubing to face up so that the tubing feeds out of the top of my pants.  I almost always wear my pump in the purse thing on my left side across my body.  So it hangs on my right shoulder cross my body with the pump is on my left side.  See the picture that I cannot believe I am putting on the internet LOL  (and no, I did not edit it, that is the selfie setting on my phone)

  • When the catheter is on my right side I just aim the tubing to my left so it still comes out my left side of my shirt to lessen the chance of the tubing getting caught on anything.
  • If your tubing gets caught it will terrify you at first, but its really not as big a deal as you think.  Chances are it will do nothing, but if it pulls it will just pop the snap piece from the tubing off, leaving the part IN you untouched and unharmed.  Just snap back on.
  • P.S. In the above picture of my 19 week pregnant gut you can barely see the lines left from the tubing resting against my skin and if you look really closely you can see little spots.  Those spots are my old Reglan sites.  Compared to the giant red welts and bruises that Zofran left me with my tummy looks about a million times better.  
That is everything I can presently think of.  If you have any questions please feel free to ask.  I do not have a PICC line and my IV is gravity fed, so if you have an IV or medicine infusion via PICC I cannot provide you with any BTDT ... yet. I might at some point, but I do hope to avoid it.  I will be working on a post or two about IVs and hydration soon too.  

Sunday, October 26, 2014

HG Treatment Post 3: The Site

This is the third 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 here we are, at the part that may be freaking out the most.

Allow me to preface this post by saying that while I am not a masochist, I am not a person with needle issues.  I, under normal health, have no problem with seeing skin get poked.  The troubles I have had with IVs (another story for another time) has made that less true, but the infusion sites themselves are no biggie to me.

I know that is not the case for everyone.  If you cannot stand the idea of poking yourself perhaps you have someone who can support you.  I know my husband, for all his manly, bearded Eagle Scout glory, cannot stand needles and gets light headed just hearing me talk about this garbage.  I respect that, in all seriousness.  He is my support network in the ways I need, I don't need him to do this.  You may, and that is okay.  Did you hear me, that is okay!

Now if you have no one who can help do the poking, trust me you CAN do it!

You may also get used to it.  Bottom line, I think the ickies of this are far more tolerable than anything HG dishes out when unmedicated.  It is worth it, you are a warrior, hang in there!

Now to the details.  Deep breath, I will include pictures of everything except me actually piercing my skin.  This said, for the really squeamish, there will be pictures of the catheter IN me, though you can't see anything I know that bugs some people.  

So this is the Orbit.  It comes in a little sterile pack with the tubing and catheter ready for use.

This is my supply set up initially.

The trucks are not necessary, but my fan kept blowing the stuff around and it helped.  LOL

My set up looks different now, but I will include both.  Taking this one part by part first .... that looks overwhelming and is really cluttered.  I did not take the picture for the blog, I took it for me so I would have a check list of the stuff I would need.  So it isn't very pretty, and things like the Notebook are not necessary for the purposes of site change (but it is necessary as I will discuss in post 4).

So in that picture we have the Orbit, which is the actual catheter and tubing (more detail in a sec).  The clamp is there so that you don't accidentally give your self a bolus of medication while changing sites, but I don't use it anymore.  I just take the tubing off of me first thing so that if I accidentally squeeze the syringe it won't push meds into me.  Seemed easier.  Skipping the Tegaderm in the center for a second, then there is a bandaid for the old site, alcohol wipes, the sharps container to drop the new site's needle in.  Also the medicine syringe is necessary and the instructions and paperwork are in the background there because I always had them at first. I am not even sure where they are now, I just don't need them.

Now that Tegaderm.  I have ridiculously sensitive skin.  All adhesives make me react, so the prospect of having anything stuck to my skin 24/7 was daunting to me at first.  Initially my nurse gave me Tegaderm, which is like the love child of Saran wrap and super sticky tape.  Tegaderm is often used in IVs, you can see the clear stickery sheets in almost all of my IV pictures, including this one:

Tegaderm is the clear sticker under everything,
everything sticks to it and not me to try to reduce my reaction.
So I would sterilize the area with alcohol, let that dry and stick the sheet of Tegaderm down.  Then I would actually pierce through the Tegaderm so when the Orbit stuck down it did not touch my skin, it was all resting on this Tegaderm.

Not a good picture, but you can see the plastic-like stuff
stuck to me around the circular part?  That is the Tegaderm.
Since Tegaderm is supposed to be hypoallergenic (a word that makes people as allergenic as me laugh) it was supposed to help.  In a lot of ways it did, but it is the stickiest stuff ever AND because I had to change so often (10-12 hours) that stuff was still in its prime.  Thus, it hurt like a mofo to remove.  Add to that I had those nasty site reactions mentioned in post one?  Oh it wasn't pretty and it certainly hurt.  So we switched to this stuff, Skin Prep.

Skin Prep is weird, it wipes on like an alcohol swab (which it has in it, so it is sterilizing as I use it) but dries like a thin almost waxy coating.  The adhesive of the Orbit then sticks to that, not my skin.  It has been very helpful.  If nothing else, removal of the Orbit is no biggie because while it stays in place okay it does not bond with my skin as strongly so it comes off better and with less trauma.

Now this is my present set up.

See. less stuff and it is easier for me now.

Now the Orbit pack itself.

First there is the tubing, which screws on to the syringe and delivers your meds to the catheter.  

The catheter initially looks like this on top, the part you hold.

The underside of it has the needle with the catheter around the outside of it.  This one still has the shipping protector thingy around it so it will look huge.

You can also see the paper backing for the sticky part that actually will go against your abdomen (or thighs).

Now to take off the paper and the shipping thingy.  Here is the catheter around the actual needle you use.  If you look closely you can see the catheter stops like half way down the needle.

It is not very big, the needles they use for IVs are massive comparatively.

Once you prep your skin (with alcohol or Skin Prep or whatever as long as it is sterile) then you pinch up what you can fat wise in your abdomen, flank, or thighs and push that needle in at 90* angle.  Once you did that it will look like this:

It isn't comfortable, but the faster you get it over with the better.

Then you remove the needle part by pinching those tabs on the side and pulling out gently.  You don't really feel anything except maybe emotional relief at this point.  This is the needle without the catheter on it.

Take that needle out and this is what the site will look like now.

That is the exposed catheter thingy, no giant hole in your side. There is no visible hole there, really.  I know there is some kind of something but its not whatever I had in my head when I imagined it.

Now you snap the tubing's end piece on.

Boom.  You did it!

Now you have to push the Yes/Start button on the pump a few times to resume the session and keep the meds flowing.  This was all discussed in post 2.

Now, if you are wondering what the catheter itself looks like, this is one that I have removed from myself.  This one was in me, so there is medication in it if you look, but no blood and gore.

Not so bad, right?

Oh and there is also this thing in the Orbit packs.

I have no freaking clue what it is or what it is for.  LOL My nurse didn't either so it is apparently not important.

Once they are in I don't feel them now that I am on a medicine by body accepts.  With the Zofran I had a pinching feeling initially that increased to discomfort the longer a site was active.  Reglan has been accepted by my body and does not hurt.

As I have lost weight, a double edged sword to say the least, poking myself has gotten a little harder.  When I started I was padded enough to have a decent amount of fat to poke into.  Now?  Well, I have a lot less, so it is a little uncomfortable but if I get it over with fast it isn't so bad and I have some suggestions in post four about this too.

When I remove a site sometimes I have a mark from it, and sometimes a little bit of medicine (and occasionally a tiny bit of blood) will come out of the site.  Not painful either, except when I was reacting to the Zofran.  Slap a bandaid on it and move on.  For the sake of clarity, this is what one of my Zofran sites looked like.  It is not an extreme reaction so you may look like this with it because Zofran is a skin irritant.

Now I have just dots and slight itchies from the adhesive because that is how redheads roll.

So that is the the tour of my infusion sites for the Reglan/Zofran pumps.  Next up is the random hints and tips I have that I figured I would stick in one post to try to not make each of these a total novel.  As always, please feel to ask questions and know that this is meant to help not explain. I am not a medical professional, just someone sharing her experience.

Saturday, October 25, 2014

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!

Friday, October 24, 2014

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.

Thursday, October 23, 2014

HG Treatment Intro: Everything I wanted to know...

I keep meaning to do this, I know I wanted posts like this when I first was told I might be getting a pump so I could hear how other people handle it.  So here we go!

The everything I wanted to know about the Zofran/Reglan Pump series!

Both Zofran and Reglan (and probably some other medications that I am not aware of simply because I found one that is working for me right now) can be taken orally via pill or via infusion pump.  My doctor switched me to infusion pump Zofran when my vomiting was severe enough that I could not reliably keep down the pills I had been on, and the pills were really not doing much anyway.  It was typical to vomit more than 15 times a day, quite a lot more than that honestly because I just stopped counting once I hit double digits.  Its depressing (and exhausting) to puke so often.  On my worst day I imagine it was 30 times or more and I had given up any attempts to eat or drink as they seemed completely futile and miserable.

I think in all things medical, it is important to be your own best advocate.  This is hard when you are so ill, so hopefully you have an amazing support team/person who can help attend appointments and ask questions.

In the beginning I don't think I even realized how bad I was.  I was too busy surviving it.  I did not bother to worry about what it all meant, I was too busy just coping.  My husband was the one who started urging me to talk to my doctor because even though pregnancy always makes me miserably sick, this seemed worse.  This is my third child and my fifth pregnancy.  I did not experience HG with either of my miscarriages and my prior two successful pregnancies never made me this ill.

Anyway, while other pumps and services may differ, this is what my experience looked like.  I hope that it puts your mind at ease if you are here in anticipation of your own treatment.  If you are here merely from curiosity, hope that it helps educate you.

This is of course, not medical advice.  Simply my telling my story and offering advice and ideas as they may apply to you.  You need to speak with a medical professional in real life, not an online blogger who calls herself a rocket surgeon as a joke.

Please feel free to ask me questions if I need to clarify something!  Here are the posts in this series.

Wednesday, October 15, 2014

Testing & Pregnancy

If knowledge is power and ignorance is bliss, that must make knowing a painful yet empowering thing. Sometimes this is absolutely the case.

Recently I have been following the story often referred to in the news as the Bucket List Baby. On facebook, Prayers for Shane has become something I check regularly. Prior to Shane's birth it was a page I checked daily to keep my own priorities and emotions in focus as I navigate my own bumpy pregnancy. But I also continued to check it both before and after his birth because the intensity of love and beauty in Shane's family deeply touched me. 

I found myself reading the comments one day and several people indicated in one series of replies about their own refusal to have medical testing done in pregnancy in honor of Shane. These parents-to-be wore their no testing status as a badge of honor, firmly stating testing would make no difference in what they would do, so they didn't want to have it. 

While I am a firm believer in "to each his own" I have to say I disagree with those people, but perhaps not for the reasons you'd think. 

At ten weeks pregnant the option for a blood test was offered to my husband and I. This blood test could detect a great number of things I never knew was possible so early. By seeking out the fetal blood in my own blood stream they could determine the chromosomal health of my unborn child. 

I honestly was both amazed and terrified. 

My knee jerk reaction was: Nope. Don't want it. Like the people on those prayer threads and replying with genuine good intentions on that beautiful facebook page I asserted that knowing would make no difference. 

But my husband, ever the practical non-emotional-knee-jerk kind of guy gave me pause. 

What would we do IF we knew. 

Usually the darkest of options is what pops into our heads here. If something were horribly wrong, knowing gives you the chance to terminate. However, we wouldn't. It wasn't a possibility we would consider, this why I didn't want the test. Why I thought it was not valuable to us.

But there is more to life than black and white. There are a lot of grey areas. 

What if knowing meant we'd be prepared, emotionally? Shane's astounding parents were prepared, this the amazing acts of love and devotion in giving their son a lifetime before he was even born. He only was on this earth for less than five hours, but there was no shock and confusion int that time. Just love. What an overwhelmingly beautiful gift his mom and dad and other family members were able to give him because they knew

Beyond the most tragic of possibilities there are other things knowing can gift a family with. Time to emotionally prepare, research, seek treatment options, discover early interventions that can be taken ... ask parents of any child with special needs of any degree, these things are priceless. 

While my children are overall quite healthy their lives have not been without medical challenges. None of their challenges would appear on any of the screenings I am aware of in pregnancy, but I know what it is like to give birth and have the terror of things not being what you expect. 

Anything to remove or lessen the possibility of that is utterly priceless. 

So we had the blood work. A week later we were told that as far as the test could tell, our child has been graced with health and no chromosomal abnormalities. 

While I will be scared until I see this baby, and likely some lingering fear thereafter, it is one less worry. And that is priceless. 

So I don't judge parents who opt to not know, I urge those who do so to know that it isn't fear or dark motivations that prompt all parents to know. Sometimes knowledge is power, the power to face whatever it is that life may hand you in a way that is both dignified and prepared.  That is a powerful gift, not one I will turn down.  

Tuesday, October 14, 2014

Oh no he di-in't!

I just came back from an OB appointment.  I am 17 weeks, HG is kicking my ass and I am having like nooooo fun at all.  I went into the OB prepared to be reasonable but to complain about the following.

  • I am hooked to the infusion pump (Reglan now, Zofran was awful and not helpful) 24/7 and still spending more than 6 hours a day nauseous.  The 6 hours is an indicator the home healthcare company established.  
  • I may not be puking, but I am dry heaving constantly and my body is trying to throw up daily.  I am miserable but not constantly vomiting, so while better I am not better.  Make sense?
  • The reflux is horrible.
  • Bolus doses of my medication make me much sicker, can I have something else on demand when needed that isn't Phenergan because that knocks me out for hours?
  • The last thee IV attempts went like this:  Three ago she poked me twice (I think) and got the IV in.  It died 12 hours later.  Two ago she poked three times, blew two veins, and got it in.  Died about 14 hours later with constant intervention and flushes to keep it that long.  Last one took five pokes, three blown veins and she never got the IV in.  I am now a week without IV, my eyes are hot, I get winded talking, I feel super drained, and I am covered in painful bruises.  What can we do about this, because I do great the second an IV is in (as in I can eat and drink myself).
  • Last but not least, I am obsessed with the panic that I am having twins.  My only ultrasound occurred at 7 weeks pregnant and was just an on-the-abdomen type so the image was terrible.  We saw a faint heartbeat, but everyone tells me that this is no reliable indication of a singleton pregnancy at all.  
So I wanted to have some conclusion on at least some of that.  I know there is some of that he cannot help me with ... but I had hopes that something would be addressed.


I was offered no other anti-nausea meds and he never even addressed it.  Told me to take Tums or Prevacid for the reflux and see if that helps.  When I detailed how awful the IV attempts have been he interrupted me to say "I will not order a PICC line if that is what you are hoping for."  Um, who hopes for a PICC?!  I never said anything about one, I was concerned that is where we are heading because several nurses have commented about it.  Perhaps this has come up in reports or something because he was awfully vehement but not explanatory at all.  He said he only does PICCs in cases of parental nutrition, and I am not sick enough for that.  Um, yay?  So what does that mean.  "Let the nurses keep digging."  Uh, you offering your arm up for that?!  I cannot describe how unpleasant that is.

With the twin thing he only put the doppler do-dad on my abdomen for like 10 to 15 seconds so long enough to hit a heartbeat, but no attempt to listen for two, no uterine measurements to see if I am measuring around gestational age ... nothing.  Just commented that I have "at least one in there."  Har har, you funny Doc.

But by far the best part, that made me want to peel my ass off that paper covered exam table I was having so much fun balancing on was when he suggested I eat crackers and cereal.

Oh no he di-in't!

Then he added to that suggestion, which meandered its way into this post as shit to NOT say already, that I sip my drinks all day.

Oh so you mean I shouldn't shotgun them?  WTF! *slaps forehead* why hasn't someone told me this already?!

I actually thought of this scene while in the doctor's office.

I do sip.  It is how I force down my 30 ounces of fluids I am so proud of a day.  I also tried crackers, like 14 weeks ago.  Funny thing, when your throat is raw you start thinking about your consumption in terms of regurgitation.  Crackers hurt coming back up.  Mashed potatoes do not.  At least not as badly.  I will stick with my effing potatoes, thanks.  Blood coming up with the puke and bile is just not my idea of fun.

Ultimately, I am trying to just calm down and figure out what I want to do next.  I am writing this more to vent than anything.  HG is hard enough without having to fight for medical care that is helpful.  My doctor was super helpful and awesome before today.  Then today happened.

I want to spoil myself and wallow in my misery but other than lay here and keep trying to *ahem* sip my Sprite (the only liquid I can drink) I can't exactly do much.

Friday, October 3, 2014

Nine Circles of Pathetic

Ever heard of the Nine Circles of Hell?  I loved Dante when we read it my senior year, I am weird, I know.

This is like that. If your rolling your eyes and thinking "Lawd, I hope this isn't anther depressing HG post" ... well, sorry. Come back in like a year, I might be done by then. Right now it's rather consuming. 

I'm presently waiting for doctor authorization and insurance approval for another round of continual IVs and a new medication for my pump.  I feel like I got run over by a semi and have not kept food or liquid down with much success for .... a while.  Time is a blurry thing.   And I am bored.

So without further adieu:

First Circle: Fantasizing about the food I will eat when I can, simultaneously gagging at the thought of the food I cannot possibly eat now. 

Here your punishment is dreaming about all the stuff you want to eat.  You can't do this all of the time, but when the waves of nausea abate enough that you find yourself with the energy and ability to dream of "normal" you let your mind wander to all the stuff you will binge on once you won't automatically vomit at the site of food.  Of course, these fantasies make you puke ... and the cycle continues...

Second Circle: Sobbing over anything because I'm pregnant and that happens, then sobbing because tears are a huge waste of hydration.

Hormones tearing through you at nine thousand miles an hour, you find yourself moved to "ugly cry" over a video your perpetually single facebook friend shared of her cat.  You hate her cat, but suddenly it is the most breathtakingly adorable thing ever and you find yourself weeping with the sheer overwhelming flood of emotions Mr. Twinkie buries you in.  Then you realize that you are weeping out the shit that is probably dripping into your arm via IV because you haven't been able to drink in ... a while.  So you cry over the senseless waste.  Spilling more tears.  And that cycle continues too.

Third Circle: Philosophizing about which is better -- dry heaving or actually puking.

Its a toss up sometimes.  The dry heaves are violent, because your body is as determined as a three year old in a tantrum to complete the job.  But for whatever reason, you can't *ahem* get it up.  Irony, no?  Anyway, puking sucks.  Dry heaves suck too.  When you do both so often that you find yourself critically analyzing which is harder on you, you really have hit a new level of pathetic.

Fourth Circle: I watched Dora, Team Umizoomi, and Paw Patrol with the kid not in the room because the remote was too far away and energy is a precious commodity.

Seriously, that is an hour and a half of my life I will never have back.

Fifth Circle: I am like a dog ... I just want to take a ride in the car. 

Sun light.  Fresh air.  I miss anything that isn't this house.  I just want a ride in the car, but it might make me puke ...

Sixth Circle: When you can eat, you consider regurgitated texture as equal in importance to taste.  

If I am going to eat, then odds are it might not all stay down.  Why try something like bread or crackers when something like oatmeal or even baby food is the same regardless of if it is heading up or down?  Oddly this makes it feel a little more tolerable and like less work.

Seventh Circle: Mumus.  I am considering them.  

My weight keeps dropping, but my tummy keeps swelling.  I don't think my uterus is this big at nearly 16 weeks pregoo, so I am blaming the bloat from the side effects of Zofran (like constipation that could kill and elephant).  If this wasn't enough misery, it means that my normal clothes are less than comfy, so maternity clothes are the option.  Except they cover your tummy.  They actually touch your belly.  You know, the tummy that is sore as a mofo because of the icky infusion sit reactions I keep having.  Bleh.  So when you are too fat for normal clothes and too sore for maternity clothes ... mumus.  God help me.

Eighth Circle: Peed my pants while vomiting.

Yup.  More than once.  I may even admit to this being a reoccurring problem if I was an honest person.

Ninth Circle: Peed my pants while vomiting but wish I had pooped myself because at least that means I can go. 

When you are actually at a point where you are wishing you would just crap your pants ... you know its bad.  Need I say more?

I didn't think so.  

Thursday, October 2, 2014

I am BatWonderWoman!

Attitude is everything. Sometimes I agree with that, sometimes I want to punt the people who say that squarely in the groin. Today, I'm going with it.

Home healthcare came out on Friday night. {It takes forever to edit and complete a post these days so they are up about a week after I write them.  This was Friday, September 26th in case you are trying to keep up.} We determined it will cost more than our mortgage per month (that was with the waver they offered, it would have been three times that) but it's not like I have all those OTHER options. Violently ill and wasting away was the only other "choice."  So "second mortgage" it is.  

So she came and I was in far worse shape than I thought I was. I thought I was maybe a bit dehydrated because I had a really good few days about three days ago where I was eating and drinking. I figured that had caught me up, and honestly I have been a LOT worse than I was at that moment so I wasn't too worried.  So when she was like "here pee on this so we can see how bad your ketones are" I was more concerned that she would think I had overreacted.

I scored the highest possible, four pluses, but this is like golf I guess and high scores make your nurse make faces at you and crank your IV up muttering things like "bolus" and "alarming."

Anyhoo, it's not such a bad process, the pump or the IV. I'm fairly confident I can handle both for now. Knock on wood.  Once the IV is done I will be more mobile and that will be nice. The IV cart they gave me is "disposable" in that I won't have to give it back. Translation: this thing could have been made stronger had it been built by second graders with Popsicle sticks and glue. 

My pump site is sore already, which stinks but isn't alarming. I may have to change it twice a day if it's a problem, which I'm not thrilled about but it's not unbearable by any means. Fingers crossed I just get used to it and the soreness fades.  Comparatively I feel great, I haven't vomited or dry heaved since the pump and IV were hooked up!  Knock on wood, again!  Nauseous, but not getting sick. Hopefully, with bated breath, my fingers are crossed. 

I will do way more detail later with pictures because I know I would have loved an explanatory blog post before I had this all done. For now, I leave you with just a couple pictures. First, my Pump itself, which I have named Robin. Because what else would you call a trusty, dependable, sidekick?

If that sucker is Robin that would make me Batman, right?

Kinda. Hee hee, I just thought it was fun to say.  In keeping with the superhero theme, which we are mildly obsessed with in this house, I couldn't help but notice that my IV bandaging looks a little like a critical accessory for another superhero...

If you squint just so, and really try hard to keep focusing on the positives it kinda sorta may look like Wonder Woman and her awesome Bracelets of Submission, no?

No?  Well I am running with it!

So Robin and Wonder Woman will be back for more later. For now I'm just going to hold still so I don't snag any tubes and enjoy not seeing bile first hand. 

Wednesday, October 1, 2014

if you know what you're doing ...

Sooo this was supposed to be the pregnancy announcement post.  Ha.  Life had other plans as I only just finished editing it because shortly after I started writing it I was crippled by the endless pukefest that is HG. Anyway, for continuity's sake and to address the reason I went from "I don't want to be pregnant" ... long posting gap ... to "pregnant and miserable!" in the space of three posts.  


It is never lost on me, in fact it rather haunts me honestly. 

Lately has been no exception.

So I have (again) sucked with the posting.  Sigh.  I am really terrible at consistency with pretty much anything in my life, so the blog isn't the only thing I am horrible at maintaining.  I am pretty sure this is why my houseplants always die ... come to think of it my kids and pets are pretty freaking lucky. 

Anyway -- irony.

When last I left off posting I was bemoaning the perils of a threenager and karma as well as saying farewell to Gargamel, twice.  I said specifically, and I quote ya here, while referencing our plan to try NFP:
I may blog about them some more as I go on, but may not.  I sincerely hope that the blog will not start with two pink lines, because if you know what you are doing you shouldn't get pregnant at all.
Did you catch it?  Those fateful words ... if you know what you are doing ... when do I ever know what I am doing?!

Now, in all seriousness, we kinda sorta knew what we were doing.  I do owe NFP (Natural Family Planning) a post of its own to explain why we felt moved to do it because there was a little more to it than Gargamel.  At any rate, I had it down.  I was charting and temping, and I totally knew when I was ovulating and when I wasn't. 

We discussed maybe trying in a few months.

Then something really stressful happened, a family issue that is neither fun to discuss and completely outside Bunyan's and my control.  Stress does funny things to a woman.  Like mess up her usually reliable as clockwork ovulation schedule.  Days, people.  Messed me up by three days.  And BAM!

The thing about NFP is that the point is you are supposed to be open to the possibility of a pregnancy at any time.  Even if you weren't planning it exactly at that moment. 

So even though we weren't exactly planning it, and even though I strongly maintain that NFP works beautifully (I don't think we gave it enough time to really really figure out what happens to my cycle under various circumstances) we are very excited to announce that we are expecting the unexpected.

I have another ultrasound in the first week of September and will feel a lot better after that one.  We have a loss-history so the first trimester is a terrifying time for us.  For now I am taking some solace in how miserable I feel, because I never felt sick during the pregnancies that did not make it.  The doctor did see a little flashing heartbeat, so fingers crossed we should have another little goofball in March of 2015.