Dressing change day!

Wednesday is dressing change day.  Pam, my home care nurse comes every Wednesday to change my PICC dressing.  It is a recurring event on my google calendar.  Gosh, I lead an exciting life.    

My arm starting to heal
(February). 

I first met Pam when she came to set up my zofran pump.  I mentioned this before but she said if all goes well we wouldn't ever see each other again.  Well she was back twice to start peripheral IV's within the next week.  Once I got my PICC line, I knew we'd have a weekly date until it came out.  When I ran into problems with my PICC line (long story short my arm blistered and ozzed under the dressings, generally my skin was mad), Pam was here every day or every other day for over a month.  She works in Waukesha and lives is Dousman and even on the snowiest of days she came in her tiny car to take care of my PICC line.  I am confident that my PICC line is still in and working today because of Pam.  Now even this week I had an issue with some blistering and Pam came out on Monday to check it out.  She of course came again today to ensure things were good.  The PICC has been in for 4 1/2 months and it needs to last 2 more so we are being very careful.  Pam also has a helper depending on the time she comes as Fiona now enjoys standing guard and watching the dressing changes.  She will also bring flushes and alcohol wipes in case Pam needs a few extra. 

Along with the dressing changes Pam takes my vitals and I get to answer the fun questions of how many times did you vomit, how many hours were you nauseated, how bad was the nausea, stuff like that.  I like Pam and appreciate her understanding and compassion.  The best part of her visits is when we listen to baby's heart beat which is reassuring.  It always puts a smile on my face. 

Keeping it in perspective

I have said I am a lucky woman.  I truly believe that.  This experience while not easy is self limiting.  It has been a learning experience and I hope to come out of this a better person.  I am grateful to be surrounded by outstanding support.  There is nothing like a funeral to help me remember all of this.  Yesterday I attended the funeral of a dear friend's father.  It just reminds me how I need to cherish every minute and not wallow in what is not going well.  Don't get me wrong, I still think this vomiting business sucks.  But it just brought to the forefront that this will be over in 10 weeks (I'm personally shooting for 8) and I will end this ordeal with the most precious gift I could ask for.  How many people can say that being sick ends with something so wonderful?  This is the last time I will get to experience being 30 weeks pregnant, so I intend to make the most of it and enjoy what I can.  Those outstanding little kicks, rolls and seemingly dances of joy almost always put a smile on my face (occasionally they lead to vomiting, then I don't smile too much). 

I also want to share that I have been taking the Vitamin B6 since Thursday night.  I have not noticed much if any difference at this point.  The vomiting continues more often than I'd like.  On Friday a couple people told me that I looked a little better.  So its either good for my skin or they are just lying to me!  I will keep up with the B6 and give it a bit more time before I render a verdict. 

A rough patch

In a previous post I mentioned how I had hit a plateau with how I had been feeling.  I would sporadically vomit and even have those glorious days when I didn't at all.  Overall I was getting used to our new normal and getting through daily life.  The past couple weeks things have gotten a bit worse.  The vomiting has increased to about 5-6 times a day and I generally feel like I am exhausted and simply running on empty (essentially a constant state of the flu).  I haven't done anything differently so of course this comes with a good deal of frustration.  At this point my doctor is unsure what to do so she referred me to a specialist. 

This morning I saw a perinatologist (an obstetrician mainly used for patients with high-risk pregnancies).  First I had an ultrasound done as they wanted to ensure the baby is growing appropriately.  Best news of the day is that the baby is great!  Growing like a weed and moving like a crazy person.  S/he is actually on the big side....83rd percentile.  Who would have thought, hey?  So Dr. Worthington (the perinatologist) didn't have too much new insight to add to my current situation but was pleased the baby was doing well.  His only new thought was to add some additional Vitamin B6 to my IV fluids to see if that would help with the vomiting.  The B6 arrived late this afternoon so I will add it to my bag tonight and say a prayer it helps a bit. 

In the mean time I am attempting to come to grips with the fact that the increased vomiting, fatigue and seriously low energy might be the new normal until the baby is born.  This is frustrating as I felt like I was hitting a routine and becoming a bit more independent.  I have now reverted back to relying more on my parents and husband on a daily basis.  I know I've said it before but I don't know how I'd do it without them.  They are the definition of good people.     

Tuesday = Supplies = Fiona Fun!

Every Tuesday my friend the Fed Ex man comes to my house with 2 or 3 large heavy boxes of IV fluids, medications and supplies.  Who cares, right?  Wrong.  When I bring in the boxes (yup I know I shouldn’t because they are pretty heavy but if no one is here I bring them in) Fiona goes crazy.  She claps, squeals and gets down right happy to see the boxes.  I can barely get them open fast enough for her liking.  But once they are open, my work is essentially done. 

I learned months ago that she quite liked to be helpful and was a pretty strong little girl.  So one by one Fiona carries the IV bags (usually there are 21 - I use 3 per day so it lasts a week) and puts them into the bin where they live.  She has learned the best way to carry them and it doesn’t faze her if she drops one she just picks it right back up.  The OCD part of me used to rearrange them to look nice, but then I wondered if I had really lost my mind and left them just the way she puts them because I thought if someone would really care that my IV bags aren’t organized they would just have to leave my house.  The IV bags are by far Fiona’s favorite. 

She does like the other things though too – especially the ice pack that comes with my medication.  She will run around the house with it and I swear nearly get frostbite on her hands before she will give it back.  Alcohol wipes are also a great source of entertainment.  They fit just about anywhere and we find them everywhere (so far the best place was the fridge, which she can’t open herself so she must have snuck that in somehow).  Her preference is to dump them out and put them all back in the bag or if that isn’t as fun, file them in our file drawer.  The latest fascination is with the flushes.  I think it is because they are wrapped in crinkly plastic (picture of her unloading those on the left).  The poor girl is going to be sad when Tuesday is just another day and all of these fun “toys” are gone.  I on the other hand will be one happy lady!   

Why do people stare?

I can really answer my own question, it is human nature and people are curious.  I am guilty of it and I am guessing most people are.  My issue is the long awkward staring that makes the person you are staring at feel bad about something they likely can't do anything about.  I personally have only experienced this for a short time.  I am really having a new sense of what someone who looks different for any reason whether it is their skin color, a physical disabilty or having medical equipment (wheelchair, oxygen etc.) must go through everyday. 

Usually in my errands to the grocery store or Target I don't notice too many of those awkward stares which is nice.  My pet peeve at the grocery store is the people who keep running into my backpack.  What I'd really like to say is yes I know it is big, bulky and in your way but I'm the one stuck with it 24/7 so just deal with it for the minute it bothers you.  Where I seem to find the staring more prominent is at restaurants or other places where it is less hectic (not that I get out much these days).  Ryan and I went to a nice dinner and it was incredible the amount people whose heads nearly spun off to stare at me getting up, putting on my backpack to go use the bathroom.  I felt like I was wearing flashing Christmas lights on my head.  Sometimes I think I should wear a sign on the backpack saying "I'm pregnant.  I vomit.  This helps."  What I would like people to do instead of staring is just ask what it's for.  The families I care for at work most often ask about the backpack.  Many ask immediately but some take a while.  I don't bring it up but I really don't mind people asking, I would rather have them know then just assume who knows what.  I have yet to get a negative response about it, which I know others who get stared at are likely not as lucky. 

I am very blessed to know this will end for me.  It has definitely opened my eyes to how much just a look or too long of a look can make someone feel.  Think about it the next time you see someone who looks different than you.  I sure do. 

Ziploc bags. Don’t leave bed without them.

This lesson I learned when I was pregnant with Fiona and use it too often with this pregnancy.  Ziploc bags make for great vomit receptacles.  Now it did take me a bit and a few embarrassing situations (vomiting in hallways, elevators, parking lots, places no one wants to see) to figure this out but I’m a pretty quick learner and began carrying them with me.  If you see me these days, just ask where my Ziploc bag is.  I have many and they are everywhere.  I currently have one tucked into my waistband as I am wearing pants with no pockets and a T-shirt.  My anxiety level would be greatly increased if I did not have one on me at all times.  I always have a backup and my trusty backpack comes in handy.  Two bags live in there.  There are even some next to my bed as you just never know when you might need one.  Jacket pockets are great as are purses and diaper bags.   


There has to be a lot in the car.  No question.  I learned that lesson in the car after I only had one, had already used it and reopened it.  Bad idea.  When I was in labor with Fiona, Ryan did a smart thing and just took the box with us in the car.  Now some of you might be entirely grossed out by this and I get it.  Then you have my husband who is great about taking my Ziploc bags after I get home from work (often there is vomiting on the way home) and he often comments about it and what I ate that day.  He never ceases to put a smile on my face.  I’ve also learned you don’t want to go cheap, buy the Ziploc brand.  They seal well.  Can’t have the bags coming open, it really defeats the purpose of them in the first place.  If only they made one that wasn't see-through. 

The PICC line I love to hate.

Some more info on the PICC (with some help from Wikipedia).  A peripherally inserted central catheter (PICC line) is a form of intravenous access that can be used for a prolonged period of time.  A PICC is inserted in a peripheral vein, such as the basilic vein (large vein in upper arm) and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava (large vein that carries blood into the heart).  

I love my PICC line, really I do.  The biggest reason is that it has helped me carry the Bitoski until now and that s/he is healthy.  I don't know if I could say that without having the PICC, it is a bit of my lifeline these days.  Hands down, love the PICC line.  It is sturdy where a regular IV just isn't, there is much less worry about pulling it out or getting it kinked.  It lasts for a long time!  I've had it since Nov 19th - almost 4 months now and it still works where normal IV's only last a few days.

I hate my PICC line.  There are a few things that drive me crazy about having a PICC.  It itches.  A lot.  Recently there was an issue when my skin got angry that it's been covered for months and blistered terribly all around my line.  With the help of Pam (my home nurse), some experts at work, and every two day dressing changes things are looking better.  But it still itches like crazy.  Showering is a chore.  The dressing can't get wet, so I use glad press & seal and then handi-wrap to seal my arm before I shower (after I unhook my pumps).  Of course I can't wrap my arm myself so I must rely on Ryan or my mom to wrap my arm.  Let's just say a quick shower just doesn't happen anymore.  I'm hooked up to lines all the time and have to carry a backpack, it just gets old especially when the lines get caught on door knobs or something random and I almost take myself out in the process.  Sleeping is different.  I roll around like a crazy person at night.  I figured out quickly that I had to be careful or I would get tangled and kinked.  Something is always beeping at me.  Some pump wants to be restarted for no reason or is needing batteries or tubing is kinked or thinks it is.  My alarm clock these days is the beeping of my IV pump to tell me the bag is empty.  I look forward to the day when it is a baby crying instead. 

Yes the PICC drives me crazy but in the end I love it more than I hate it. 

How I got to 28 weeks 2 days…..and counting!

I apologize in advance for the lengthy post, but here goes. 

The beginning of our conversation to have another baby was a bit entertaining but I will leave that for another time.  We had always wanted more children and having Fiona has brought such joy to our lives.  We wondered what another pregnancy might entail.  This time we knew it could be more difficult but of course every pregnancy is different so it could be better than the first.  It was a leap of faith we decided to take. 
 

We're pregnant....Fiona is shocked!


On September 25, 2010 I found out I was pregnant with the baby I like to call Bitoski (a story for later).  I hoped and prayed I would feel well and vomiting would not be a part of this pregnancy.  I vomited for the first time on Oct 8th, it was a Friday and I remember it well.  Things spiraled downward quickly but I was smarter now and busted out all the tricks I had learned the first time around, saw my doctor immediately and began on oral zofran.  None of my tricks seemed to be working or even helping for that matter. 

I went to St. Joe's for IV fluids and meds on Oct 20th with minimal relief I was back and went inpatient on the 25th to spend a rather depressing couple days in the hospital.  I was about 8 weeks pregnant, very few people knew and the next 32 weeks looming ahead were frightening and seemingly impossible.  I couldn't even care for myself.  By Nov 8th I was back at the hospital and knew we needed a plan.  A PICC line was discussed but my doctor had what we had hoped was a better idea, a subcutaneous zofran pump (very similar to an insulin pump).  This would give me continuous zofran through a tiny catheter in my stomach.  I was very excited.  That night I was happy to meet Pam, a nurse from Alere (my home care company) who came to set up the pump and get me started.  Pam said if all went well we wouldn't see each other again.  I chuckle at that thought now.  Anyway, the pump provided minimal relief I continued to vomit often, I was still dehydrated and needed IV fluids.  Thankfully now I could get this at home but quickly realized an IV pole and Fiona who was just learning to walk made for a dangerous household.  Having a regular IV was good but they don’t last very long and are fragile.  It was apparent by the next week I needed constant fluids so on Nov 19^th I got a PICC line (peripherally inserted central catheter), which is a type of IV that is inserted in my arm, but the tip lies very close to my heart.  The benefits are it is a stable IV and can last for the duration of the pregnancy.  I have a love/hate relationship with my PICC but that will be a post for another time.  I was able to get rid of the IV pole and transition my fluids to a backpack.  This also allowed me to move the zofran to my PICC and off of my stomach, which was lumpy and sore from the meds. 

Around Thanksgiving I was realizing that fluids were a great trigger for vomiting.  Food was as well at times but drinking was almost a 100% way to induce vomiting.  So I made a decision (but did speak with my doctor about it too) to stop drinking anything.  No sips, no nothing (will save that for another post later and yes my mouth is dry and I do get thirsty).  I finally began making progress with the puking!  My energy level was still non-existent but I knew it would get a little better.  By the end of the year I was starting to plateau and the vomiting was controlled to some extent – it still happened but it was tolerable and I was gaining weight. 

On January 25^th we got the best news – the baby was healthy and growing well!  That is all I truly care about. 

For the past few months my life has become pretty routine, just a little different from the routine we were used to.  Thankfully I was able to return to work. 


There are lots of quarks and random weird and entertaining (well at least to me) things about my daily life I look forward to sharing in future posts.   

My First Pregnancy

Hyperemesis gravidarum (HG) is a severe form of nausea and vomiting in pregnancy. It is generally described as unrelenting, excessive pregnancy-related nausea and/or vomiting that prevents adequate intake of food and fluids.  http://www.helpher.org/ Hyperemesis Education & Research.

On December 5, 2008 I found out I was pregnant with our first child.  What an exciting and scary time!  I felt good for nearly two weeks before I started vomiting in the morning.  It quickly progressed to vomiting everything I ate and vomiting many times per day.  I thought it was severe morning sickness.  I saw my doctor on Dec 29th and I heard for the first time the word hyperemesis.  She sent me immediately to the hospital for fluids and IV medication.  This provided temporary relief but I was back at St. Joe's on Jan 2nd for fluids and meds again.  We met with a dietician who has worked with hyperemesis patients and she provided us with some helpful information.  I was able to better control the vomiting with the help of oral zofran, eating and drinking separately and giving up water for over 6 weeks (yes it wasn't ideal but I was able to keep other fluids down better).  I got on a pretty strict schedule of eating every 2 hours and drinking every 2 hours in between the eating.  Around 17-18 weeks I was able to tolerate some food and small amounts of liquid together.  I also introduced water back into my diet.  I continued to be plagued with nausea but the vomiting was much more sporadic and I even had a few days where I did not vomit!  I figured out pretty quickly that motion (especially the car) and being overtired would exacerbate the vomiting.  This was the plateau things stayed at for the rest of the pregnancy.  Labor was filled with vomiting but I think it helped speed things along and thankfully the nausea and vomiting were gone as soon as I gave birth.  On my due date (August 14, 2009) I had gained 7 pounds and delivered a healthy baby girl weighing in at 7lbs 5oz.   

Fiona's First Photo

My Guardian Angels

I feel compelled to write this entry now but I will soon post some background about my pregnancies and what hyperemesis is. 

I have been asked how I get through the day.  My first thought is what choice do I have but the real answer is I have great people surrounding me and a few people I must thank. 

Let me say that I can't even begin to name and thank all of my family, friends, nurses and doctors who have gotten me to this point.  Many of you have come with food, cleaned my house, watched Fiona, sent cards, said prayers and have done anything I've asked and I thank you from the bottom of my heart.  I have to tell you about a few people who deserve special mention. 

My husband, Ryan.  Now I met him in English class Junior year in high school.  I couldn't quite have imagined the same man I saw then holding my hair back while I vomit at 2am.  His is the most compassionate and remarkable man I know.  Yes, he gets up in the middle of the night to hold my hand or my hair while I vomit.  It sure is nice not to feel alone vomiting at 2am.  He gets up at all hours to change my IV bag and not once complains.  He unconditionally loves me and tells me I am beautiful even thought I know I've looked better.  He thanks me for doing this and in an instant he would do it if he could.  I could go on and on, but I hope you have an insight of what a phenomenal man I have standing by my side. 

My parents, Chuck and Mary.  These are the two most selfless people I know.  They have put their lives on hold to help me since mid October.  For a while I was pretty much unable to care for anyone or do anything.  They would come to my house before Ryan left for work and stay until he got home.  They cooked, cleaned (scrubbed puked in toilets and all), cared and played with Fiona and held my hand while I vomited.  My Dad will be singing Fiona a song one minute and then be snow blowing the driveway the next.  He is incredible, there isn't anything he wouldn't and hasn't done for us.  My Mom would leave after a long day here and come back early the next morning with Fiona safe food (she is allergic to soy), and if you know my mom that means snacks, a full dinner and any groceries we might have needed.  She has come to the hospital with me and held my hand while I wait for my PICC line and she knew her presence was all I needed.  If I can be half the mother she is I think Fiona and her little brother or sister will be two lucky kids.  

Fiona, my little 19 month old cutie.  What is there to say about her.  She never ceases to put a smile on my face.  I look at her and know this is well worth it.  She will come over if I am sick and wave and then bring me a toy or something else she has found laying around.  Thankfully only one toy has landed in the toilet.  She has brought a new meaning of joy to my life. 

So, the next time someone asks me how I get through the day my answer will come easily.  I have guardian angels here on earth. 

The two faces of pregnancy.....

I got the idea to write this blog after I saw two pictures taken today.  First let me say I am by no means a writer so I will apologize in advance.  Both photos are of me, one caught me off guard and one was posed.  I feel as though they tell the story of my pregnancy well.  The first picture (it is a bit blurry) is how I really feel about life these days while the second picture is how I try to act and go about my daily life. 

A bit of background about my pregnancies.  I struggled with hyperemesis when I was pregnant with my daughter Fiona, but not to the extreme it is with this pregnancy.  Yes, we decided to try again and here I am pregnant with our second child (due June 5th) and this pregnancy has given hyperemesis a new meaning in my life.  I have a PICC line (peripherally inserted central catheter) and get continous IV fluids and zofran (an anti-nausea medication).  I don't drink anything as it is a sure fire way to induce vomiting.  Even still I continue to vomit.   

I am hoping this will be a place for me to share my thoughts, feelings and emotions (which seem like a bad roller coaster at times) about my imperfect pregnancy.