The other side of the cot

In the past two years, Ive had quite a bit of experience being on the other side of the cot.  Instead of being the nurse, Ive been the one needing a nurse.  Its provided a unique perspective.

I went in yesterday for a cardiac stress test.  When I had my tilt table test, my EKG showed that my heart is not getting enough oxygen when it is working hard.  The point of the stress test was to see how significant this ischemia, or lack of blood flow, was.  The doctor wanted me to have it done in Cleveland when I was there last summer, but I needed to get home to my kids.  I assumed, that based on the Cleveland doctors recommendation, I would have no issues doing this very routine test locally.  Boy, was I wrong.  My cardiologist here has been less then supportive or helpful.  My primary agreed to order but then the insurance wouldnt cover.  Long story short, Ive fought for 11 months to get this test ordered and covered by insurance.  Meanwhile, Ive spent every day dealing with chest pain and not knowing the significance of the pain.  So, when we finally got the OK to proceed with the test, I was elated.  This test was going to provide the information for us to know how to proceed.

I spent the day before the test fasting from all of my favorite things…coffee, chocolate, wine…I was to stop eating altogether after 12am.  I arrived to my 9am appointment hungry, foggy and a little weak from not eating, but so excited to get it over with.  “This is gong to give us so much closure.” I told my husband on the walk in.  We waited for about 45 minutes before they called my name to go back.  They wouldnt let Darren go with me.  I can handle myself.  Im the nurse.  But, he is my protector.  I always struggle leaving him in the waiting room.  After yesterday, Im sorry that I did.

The nurse who came for me seemed kind, though quiet.  Before she introduced herself, she ushered me into a bathroom where I was told to leave a urine specimen for a pregnancy test.  “Well, how do you do” I thought to myself.  Pregnancy test is standard procedure but you could at least say hello before you ask me to leave you my bodily fluids.  Whatever, must be a busy day, I rationalized.

After leaving my “deposit”, we rushed into another room.  At this point the nurse introduced herself and made some small talk.  I was beginning to relax now.

“I’ll need to place and IV and inject you with this radioactive isotope called cardiolite”

“Im sorry, what?  I called ahead and got a list of medications that were to be used so I could clear them with my lactation consultant.  This med as not discussed.”

“Oh well, its the med we are going to use.  You are nursing?”

“Yes, Im nursing.  We ordered this test, specifically,  because its supposed to be compatible for nursing.”

“Oh, well, I need to give you this cardiolite and you will have to pump and dump for 48 hours.”

“Well, I need this test, so I suppose we will go ahead and I will just figure it out.”

The nurse injected the medication and ushered me to the locker room.  There, she instructed me to change and put on a gown.  I asked if I could keep my bra.  She said no, it would interfere with the EKG leads.  I explained how I had chosen a bra that fit so that the leads would not be affected and asked her to look.  She said the bra had to go.  “But, Im nursing”, I tried to explain.  “It will be painful and not to mention messy, to run on a treadmill with no bra”.  She asserted again that the bra had to go.  “Once you are dressed, go across the hall to the waiting room.  I’ll meet you there”.  I did as I was told and put on the gown.  It was about 13 sizes too big and even when tied, didnt cover much.  I searched the locker room cabinets for a blanket or another gown to be used as a robe, but came up short.  I was freezing, hands and feet turning purple from the cold.

I covered myself as best as I could and headed across the hall to the waiting room.  I was shocked and embarrassed to see the waiting room was co-ed.  A bare chested man looked up as I entered the room trying my best to conceal the naked under my gown.  I sat in that waiting room shivering for over an hour.  The man next to me tried to make small talk.  I think he knew I was uncomfortable.  “What do you think of our new President” he asked.  I tried my best to answer his questions and smile, but inside, the cold was beginning to hurt.  People with POTS struggle to normalize and maintain their body temperature.  The more I shivered, the more I hurt.  A migraine set in.  Black spots and flashing lights clouding my vision.  I felt a drip on my belly and realized, I was now leaking milk.  It had already been six hours since I had been with my baby.  My body was reminding me.  I shifted in my chair trying to keep my chest covered.  “You are awful young to have heart trouble arent you?” The man next to me asserted.  I smiled and sighed.  “Yes, I sure am.”

Finally, after an hour the nurse came to get me.  “Come this way please.”  So we walked briskly down the hall, with me fighting the gown and trying to discretely hold my breasts the entire way.  How awkward.  I gave up my dignity in hospitals a long time ago, but there is no reason to completely reject modesty!

“You will lay here.” The nurse said.  Now, Im familiar enough with how stress tests work, that I could guess that we were here to get resting images before the exercise portion of the test.  But I was really looking for some explanation.  I tried asking a few questions, both for my understanding and so I could also understand better for future patients.  The nurse answered my questions, but with brief remarks.  I climbed up onto the Gamma camera table and laid down as I was instructed.  No further instructions were given.  The camera closed in around me, so that I really couldnt see any of the room.  I wondered if the nurse was still there or if I had been left alone?  I laid on the table for close to 15 minutes.  Then a man stepped into my peripheral vision and said the scan was over and he would be taking me for my next step of the test.  “Oh!” he remarked as the table slid out from under the machine.  “You are very young!  We dont often get young people here.”  “I am young.”  I said back.  I wish people understood how deep that comment cuts.  Thank you for reminding me how young and also broken I am.

He took me down the hall and left me in a room.  I was told a nurse would be there soon.  The room was empty.  No magazines, no TV, no window.  Just me and my thoughts.  I wasnt excited about the prospect of staring at a blank wall, but I was happy to be in a room alone.  Finally I could curl up in a ball and try to get warm without worrying about flashing the world.  “Im so, so cold.” was the only thought I could muster.

The next face that I saw, introduced herself as Jennifer.  Right away, I knew she was a good one.  “Hello, my name is—Oh my girlfriend, you look like you are freezing!  Im going to get warm blankets be right back.” Not a minute later she came back to the room with three warm blankets.  She wrapped me up tighter than a new born baby.  I could feel my heart rate calm.  The pain in my head subsiding.  Relief.

Jennifer took a moment and explained the next steps of the procedure to me.  She checked my arm band.  She asked about my medical history.  She started hooking me up to the EKG leads while simultaneously maintaining eye contact as I spoke and working to keep me as covered as possible.  She was calm.  She moved quickly, but did not seem rushed.  She was empathetic and warm.  I felt so at ease.

Suddenly, just as she placed the last EKG lead, we were interrupted by the male nurse who had brought me to Jennifer.  He barged into the room without knocking.  Make that person number 392 who have seen my breasts today.  “STOP!  STOP WHAT YOU ARE DOING!  WE CANT PROCEED!”  Jennifer and I looked at him confused.  He went on to explain, that because I am nursing, the isotope they gave took up in my breast tissue and the heart couldnt be visualized.  The images we had taken before were “non diagnostic” and we could not proceed with the test.

I stood there shocked and confused.  I began to tear up.  I looked at the male nurse and I said “Ive waited a year for this test.  Is there something else we can do?”  The male nurse explained this and that…all things I know are hogwash we nurses tell patients when we know we have screwed up and want to blame the situation on some sort of red tape over sight.  His lips were moving but I wasnt listening.  I could already see I had lost this battle.  He wasnt going to advocate for me.  “Ill call the doctor and see what we can do”  he said.  Before I could even process, there I was again, alone in that room.  No clock, no window.  I wondered what time it was.  I wanted to ask them to call my husband and update him, but i realized I had no call light.  I had noticed on my way down the hall that there was no nursing station in sight.  The halls were oddly empty and quiet.  I decided to settle back into my chair and just wait.

As I had a moment to reflect, the tears started falling.  The test I had fought so hard for, the test that was supposed to tell me if my heart was in danger, would not be happening.  My baby is home, sick, and I know he will want to nurse when he sees me.  I cant.  Im literally radioactive.  The thought of him screaming for me and not being able to meet his needs made my stomach churn.  I felt alone, I felt discouraged, I felt betrayed.

Then I heard it.  Male nurse is on the phone assumingly talking with the doctor.  I hear him.  He is laughing.  He is making light of my situation.  Telling the doctor “its no big deal, we can just schedule her another day for another test”.  I hear him, on his way back down the hall discussing his lunch plans with another co-worker.  Its been 13 hours since my last meal.  My misfortune is his early and extended lunch period.  The nurses are all crowded outside my door now  They are discussing “what to do with me”.  I hear the male nurse says something along the lines of “I dont want to deal with her.  She’s crying”.  Another nurse says she doesnt want to be involved.  “I dont want to tell her”.

When the door opens, its a new face.  I knew right away, what this face meant.  Defeat.  This person explained that “because I was lactating”.  She explained it like this whole fiasco was my fault.  She explained how the isotope is actually used in breast imaging so its not surprise that we couldnt see the heart because of the breast tissue.  All of what she told me was very true, but she explained it in a manner that made it seem to be my fault.  She told me that the test would not be done, and that I would have to go home.  The way she spoke to me was in such a way that I felt that they thought I was going to make some kind of a scene.   She talked to me as if I was a threat.  Like I might shoot the place up if I didnt get my way.  I was so confused as to why I was being treated like this.  I had not said three words all day.  I had not been cross.  I had not done anything.  I felt violated.  I was angry  But still, I said nothing.  I asked for my husband to be called so he knew why I was taking so long.  So I could tell him what happened.  They refused to call him.  They left alone again int he room with no windows or clock.

The tears were flowing freely now.  All i could think about what how I had failed.  I should have done more research.  I should have known.  I shouldnt have allowed them to inject me.  Ive failed my baby.  How will I ever find out if my heart is ok?!  How do I even start to get answers??? I started worrying about the day of work that Darren missed and how he would have to miss more days so I could see the doctor to get a new plan and hopefully schedule new tests.  I was worried about the bills that would follow for the tests that werent done.  I was worried about how missed days of work would effect our finances.

Jennifer came back into the room.  She was quiet this time.  Her eyes were understanding.  She acknowledged my frustration.  She took the EKG pads off, little burn marks left behind from my tape allergy.  She retied my gown.  The patient advocate lady was in the doorway now rushing her to get done with me.  “I know its against protocol but just take her IV out here so we can get her going”  She said.  Jennifer was quiet and dilligent.  I could tell she felt like she was between a rock and a hard place.  No more words were spoken.  She took the IV out and handed it to the patient advocate for proper disposal.  It was made clear, through the yellings down the hall, that “That thing is radioactive and needs to go in the lead sharps”.  I know they were right, but yelling about it down the hall made me feel dirty and unclean.  I wanted to say it out loud, but I refrained. “Just shut up and do the task, we dont need a play by play.”

Jennifer escorted me back to the locker room.  She told me to get dressed and “have a good day”.   Thats a funny joke, huh.  Me, Im going home to my sick baby that I cant hold or nurse and Im going to listen to him scream at me while my husband tries to get him to sleep and the other children run wild through the house.  Sounds fun doesnt it??  I put my clothes back on and opened the locker room door.  I wanted to just leave so bad.  But there I was again, alone in the hallway, uncertain of which way was out.  After wandering for a few minutes I found a nurse and asked which way to go.  She never looked up from her computer, just pointed to the door.  The tears started falling again as I pushed open that door.

When you are in the moment, you dont realize you are being bullied.  You are just trying to survive.  The scenes are overwhelming.  The information, the papers to sign, the feelings of vulnerability…even for a seasoned nurse, like myself, being on the other side of the cot is overwhelming.  There isnt a feeling quite like being 100% at someone elses direction and mercy.  You dont have rights.  You do what you are told and how you are told to do it.  You trust the medical staff to have your best interest and safety in mind.  You rely on them to be your advocate.

24 hours have passed now, and Ive done quite a bit of reflecting on yesterdays events.  No one checked my arm band.  I could have been anyone.  I could have been completely in the wrong place.  No one asked for a medical history.  No one took vitals.  No one checked my arm band before delivering radioactive materials into my body.  The nurse who administered the medication obviously did not know that it is also used for breast imaging and that it would not be an appropriate drug for a lactating mother, or she would have never administered the drug.  The test would have been stopped or altered before the patient was unnecessarily radiated.  The nurse could have advocated for me to keep my bra and not only made me more comfortable, but also would have more appropriately met my biological needs.  The nurse could have offered a warm blanket.  The nurse could have instructed me how to call her for help if needed.  The nurse could have explained the procedure to me and told me what to expect. So many very small changed could have altered the experience completely.

Nurses, I know you are busy, understaffed, overworked, tired, haggard.  I know you probably havent peed since your shift started.  I know.  Im one of you.  I give a whole lot of grace because I know how it is.  But being on the other side, I see now, how crucial it is, to take the moments.  Tell your patient your name.  This simple process of introducing yourself and explaining to the patient what cares you will be offering can literally make or break the encounter.  Be mindful of your words.  I know that a twisted sense of humor is what gets you through the day.  This job is hard and laughter is crucial to survival.  Listen, you want to make jokes, I give you that permission.  But for gracious sakes, dont do it outside of my door!  Take it to the freaking break room!  Nurses,  you are the font lines.  If you dont advocate for your patients, no one will.  You have the power to change situations.  You have the power to get things accomplished.  Speak up.  Tell that doctor what you need and how you would like to accomplish it.  You are not the doctors slave.  You are an educated individual with first degree knowledge of a patients situational needs.  ADVOCATE.  Yes, it takes more time and more effort.  Yes, you may get shot down or yelled at.  But I can tell you, form both sides of that cot.  The moment you affect change, everyone wins.  Nurses, those pesky protocols that we get so frustrated at because they eat up our time, they are in place for a reason.  Asking me my name and date of birth 8 times a day, every time you pass pills, seems silly, but you know what?  It keeps both the patient and the nurse accountable.  Please, please, please follow protocol.  Check arm bands.  Know about every med you are administering.

Yesterday was pretty awful.  The good news is, the nurse gave incorrect lactation information and it was safe to nurse my baby after 6 hours.  I had to call the lactation staff at another hospital to verify that information after doing a lengthy review of the literature myself.  So, I was able to come home and nurse my sick baby.  By the time I was able to get to a restaurant for food and water  I was almost too weak to walk in myself.  If the nurses yesterday had known about POTS, they would have know that fasting from water that long was dangerous.  I still dont know if my heart is ok.  I have no idea what my next step will be to figure that out.  What I do know, I I will be following up with the managers and Sisters about my treatment yesterday.  Not because I want to get people in trouble or want revenge, but because what I experienced was medical bullying.  I will be the voice of change and the advocate for all of those to come after me.  I hear you patients, I hear you and I stand with you, from both sides of the cot.

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Here we go again…

God doesnt always choose to speak in a thundering voice, but when He does, you can be sure that it is to prepare you for what is to come.

These past three years have been filled with struggle, but God have been undeniably present.  He has chosen to speak to me in His thundering voice many times.  And every time, it has been followed by a command to take a step of faith.

Last year, after a year of being too ill to work for over a year, Darren and I were staring financial ruin in the face.  It was obvious that I had to find a job, but I felt so called to stay home with my kids.  We prayed for God to provide a solution that made His will clear.  He did.  I was given a job that I have no memory of applying for, that allows me to work from home and make a very decent amount of money.  Darren also took a step of faith starting a new career and also taking a sizable pay cut to do so.  This week when Darren and I received our W-2 statements, we were speechless to see, that in 6 months, we made more income then we did the entire previous year!  This extra income has allowed us to pay down almost all of our very sizable medical debt.  6 very large hospital bills paid off.  Just one more to go and we are on track to have that paid off very soon.

Earlier this week, I shared how God had used a verse in scripture that spoke directly to my need.  After a month of frequent passing out and awful air hunger, I read:

“They will walk and not faint”

I knew, because I had heard Gods voice so clearly, that a call to faith was coming.

Earlier this month I had some lab work done in preparation to see a new doctor.  This doctor has POTS herself, and says she has found remission.  I decided to see her in hope that she may have something different to offer.  I looked up the lab work results online.

I have Lyme Disease.

This is really good news and its also the absolute last thing I wanted to hear.  I devoted the last two years of my life to figuring out why I was so sick.  I researched hours and hours at a time.  I lost myself in the work.  The quest owned me in many ways.  But, I figured it out and I sought out doctors who could help and they confirmed the diagnosis. I cant even explain the peace I felt as that Cleveland Clinic doctor typed POTS and EDS 3 in my chart making it official.  After two years, I had answers.  Closure.

Getting officially diagnosed allowed me the ability to stop searching and focus on wellness.  I had accepted my normal and was actively finding ways to live fully despite the many limitations.

But now, now there is a new diagnosis.  The good news is, there are treatment possibilities.  The bad news is, they are poorly studied and not often covered by insurance.  Mainstream medicine does not recognize chronic Lyme even though we can test for it and easily see that it exists.

Ive really been struggling with this information for a few days.  I am gearing up for battle.  I know I will again need to become an expert in my own health.  A researcher.  But, I do not want to loose myself in the task.  Ive worked so hard to find myself these last few months and Ive been good, so good.  My marriage is good, my self worth is growing, our finances are stable, Im so much more calm.  Wellness is an investment.  I know that I want to be well, but I also dont want to send my family back into financial insecurity to achieve it.  There must be balance.

“They will walk and not faint”

Perhaps this phrase wasnt given to me just as a sign of hope.  Perhaps, its a prophesy for my life.  Maybe, God is telling me what I have to look forward to?  Perhaps, God is calling me to see, that He has been orchestrating this all along.  He knows our needs before we do.  He knew we needed new jobs, not only to survive, but to survive what was coming.  He knew I needed a time of recuperation before I could be ready to handle another diagnosis.  God is orchestrating all of this and simply asking me to trust Him.

I’ll admit, the last three days I have felt fear and doubt and emotions I dont even have a name for.  I dont want to fight any more.  I am so weary of this fight.  But I am promised renewed strength in exchange for my faith.

So, Im choosing to trust.  Will you pray for me?  Not just for wellness, but for balance.  To know when to research and when to take a break.  To know how to financially invest and when to say no.   There is a good chance that I may get sick again as we work to kill the lyme.  There is a good chance I may get very sick.  But it will be temporary.  Will you pray for strength for me and for my family?  There is a possibility that I have passed this infection to Levi and that may be a very big piece of his puzzle as well.  So I have to go through this to know what will work for him.  Im praying hard that this new information is what we have been missing.  Im also afraid to let myself dream of a day when I am well.  I feel very pulled in every direction and its so hard to process a coherent thought.  Please pray for clarity.

My appointment with the new doctor is Feb 16.  At this appointment we will discuss the labs in detail and begin to put together a plan for what treatment will look like.  This will not be a quick thing.  Its a process, to say the least.  Thankfully, I had considered the possibility of chronic lyme in the past and already have a pretty good understanding of the condition.  Between now and February, Im going to do nothing but continue to be committed to taking good care of myself.  The best way to prepare for battle is to go into it as a strong soldier.

Here we go again…

Lukie Turns One

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Tomorrow, my baby turns one.  I cant really wrap my head around that, because, it seems, that he was just born.  I know thats something everyone says, but its exceptionally true this time.   I feel like Im just coming out from under that new baby fog and now he’s so grown!

I love watching him grow.  Every day there is something new that we make him do over and over a hundred times, because we all just think this baby hung the moon.  But, with every new milestone met, there is a hint of sadness, knowing that its the last first, for this family.

I have 4 beautiful children.  They are my world.  Thats the problem.  I have no idea how to be without a baby on my hip.  For as long as I can remember, there was always a baby.  It started when my youngest brother was born.  I was 9, almost 10, and he was mine.  I know now, how crazy I drove my mother trying to be his mama, because I now have a little mama of my own.  As he grew, there were church kids and neighbor kids to fill my arms.  And then there was our Eva.  If I could go back in time, I would go back to when she was tiny and I would relive every one of those moments and commit them to memory much better than I managed to.  I would tell myself to go ahead and feel how good motherhood felt, even though it seemed my world was crashing around me.  My parents divorce, trying to figure out married life, trying to get careers started, buying and renovating a house.  We had so much on our plates.  By the time Levi came, we were established.  Motherhood seemed second nature.  Transition was easy.  But, as we dealt with his health issues, he developed a big resentment towards me.  “Mama makes hurts” he would say.  Now things with Emma were all around easy.  She was a delightful baby.  Always happy as long as she could cuddle.  Darren and I were both working and working too much.  Adjusting to three kids was intense.  By the time she was 4 months old, I knew I wanted to be home with her, with all of the kids.  I felt like, I got it right with her.  Things were so fluid.  I nursed her until she was almost 2.  We co-slept.  So in tune.  We were a unit.  And then back surgery and POTS threatened to take away my mobility.  I spend a good portion of her second year on the couch.

You could say, that there are things I wish I could change about each childs first year.  You cant go back in time, you can only move forward.

And then the miscarriages.  I knew that if there were another child, I knew, I wanted things to be so different.  I wanted life to be slower, more intentional.  I wanted to sink into the sweet newborn smell and really take it all in. I wanted to be so present in every moment.  Loss has a way of changing you completely so that you understand, so well, the things that actually matter.

When I found out I was pregnant with Lukas, I was so afraid.  I was afraid to get attached.  Afraid to plan.  Afraid to feel really.  I was in a sort of denial for most of the pregnancy.  I was just not sure my heart could handle losing him.  I wanted to embrace the pregnancy.  I wanted to  experience it all fully, but I just couldnt let myself.  I had hoped, through his birth, that I could find healing of sorts.  I wanted an all natural, empowering birth.  Nothing about it went as I had envisioned it.  That first look and first latch, I had dreampt of it for months.  I dreamed about how I would hold him and just love him so big because he was here.  Instead, I shook, too weak to hold him myself for some time.  Then there were after birth complications and pain.  And the babymoon I had dreamed of, coming home, well, that never happened either.  Instead, we were thrust into life as a family of 6, with a dad that wasnt present because when harvest comes, the farmer must go, ready or not.  None of it, none of it went like i had planned.

And through it I learned, that thats life.  I learned that being able to roll with the ups and downs of life was crucial to being able to actually enjoy it.  I realized that I had a choice to be miserable because nothing was going my way, or to make the best out of what I had. I had a perfect example of how to do that in my Lukas.  Ive never seen a baby as relaxed as he was.  Content to go here or there any time.  Content to be handled by this sibling and lugged around by that one. Content to just be held and be.

He and I, we quickly molded.  Our connection is strong.  Its so good.  He has healed my soul in ways I cant even put into words.  He has shown me, that I am enough.  Im not a perfect mother, but I am perfect for him.  To see those eyes look into mine, and feel his soft hands running up and down my arms while he nurses.  Its simply what feels like home.  Its not that I love him more than the other kids.  Of course I love them all so completely.  Its just that, I love him so much deeper than I knew how to love before.  Realizing that I couldnt take the gift of a child for granted, realizing that every pregnancy wasnt promised, realizing that my health wasnt guaranteed, all of these things have given me a new appreciation and understanding of just how precious his little life is.

I know, that Lukas will be the last child.  Its not what I want.  I want to continue living on this baby high.  I want to continue to have somewhere and someone else to put my focus on.  I want to continue to exist in this identity, the identity of a baby mom.  I have no idea how to function without a baby.  I want to continue to sit on this baby induced high.  I want another chance to perfect this thing called motherhood.  The days ahead are uncharted.  Its frightening.  Frightening, because I have no idea what Im doing.  Ive had 4 chances at being a baby mama, and I finally feel like I have it sort of figured out.

What it basically boils down to, is that im feeling like a child being pulled out a a candy store.  I know whats here is good.  I finally even know what candy I like best, and I dont want to leave!  But its time, its time to leave.  Change is frightening, because its unknown.  Its so easy to remain in your comfort zone, but remaining there, doesnt allow for growth.

So here is to the next stage.  The days of nursing and baby wearing and co sleeping and sloppy kisses and kissing boo boo’s, they arent gone, but they are numbered.  The days of being needed to tie shoes and button shirts are counted.  The last Ulrich is entering toddlerhood.  He’s growing up, whether his mama likes it or not.  And as he grows, Ill have to grow too and we will discover this new stage together.  ❤

Happy birthday, Lukas Abram Ulrich.  You complete us with your laid back personality and love to cuddle; with your ability to make us all laugh and your ornery attitude.  We love you so much!

Thy Will

I’m so confused
I know I heard you loud and clear
So, I followed through
Somehow I ended up here
I don’t wanna think
I may never understand
That my broken heart is a part of your plan
When I try to pray
All I’ve got is hurt and these four words

Thy will be done

I know you’re good
But this don’t feel good right now
And I know you think
Of things I could never think about
It’s hard to count it all joy
Distracted by the noise
Just trying to make sense
Of all your promises
Sometimes I gotta stop
Remember that you’re God
And I am not
So

Thy will be done
Like a child on my knees all that comes to me is
Thy will be done

I know you see me
I know you hear me, Lord
Your plans are for me
Goodness you have in store
I know you hear me
I know you see me, Lord
Your plans are for me
Good news you have in store

So, thy will be done

Like a child on my knees all that comes to me is
Thy will be done

I know you see me
I know you hear me, Lord

Have you ever had a song that just pinged your soul? Stops you in your tracks, takes your breath away kind of moment?  Hillary Scott wrote it about a miscarriage she experienced.  Having experienced that myself, the first time I heard the song, I listened through sweet tears of agreement.  It sums up how I feel and felt so perfectly.  Ive enjoyed hearing it every time, like a new layer of healing is peeled away.

These last two years have been so intense.  Hard and beautiful and blessed and horrible all at once.  Its been so much to process and think through and attempt to understand and learn how to embrace.  Its been mountain tops of goodness and valleys of pain. There have been so many times where I have found myself on my knees giving back my desire for complete control to the Lord.  But, like any human, there are those corners of my heart that I dont give up so easily.

Since he first became sick at 12 months, Levi has been a very special burden.  I have known since that first fever, there was something just not quite normal about this child.  Doctors repeatedly tell us he is “fine”.  He is just a little outside of normal in many areas.  Ive always known they were missing something.  On the outside, he is a vibrant and healthy child.  He runs and plays in the mud like any other 5 year old boy.  On the outside, he looks fine.  But, if you know him well, you know there are many subtle things, like his inability to fight off a common childhood sickness without medical intervention,  or urinary incontinence, or the frequent unexplained ulcers on his face, that make him complicated.  Having the Ehlers Danlos diagnosis helps explain so much of these abnormalities, maybe even all of them.  But, without an Ehlers literate pediatric doctor, the detective work has been completely up to myself.  Always reading and researching and fighting to connect the dots.  Im exhausted.  Many days I feel like I cant take one more step on this journey.  We have made some huge strides in the last six months with diet and supplements and tongue tie revision.  Huge steps.  I rejoice in every win.  But still, there are big issues, like the incontinence, that simply cant be ignored any longer.

After seeing the new urologist last week, I was so excited to have a doctor that I feel will listen and fight with me.  Hallelujah!!!  But then, not having insurance for another month means waiting even longer for answers.  That means more medical bills on our already taxed budget.  Im afraid of what those answers may be.  There will very likely be some form of surgery, either to remove whatever is blocking the bladder from emptying or, on the spine or brain, if the problem is neurological, like we fear.  My heart breaks over needing to put my little Levi through anything else.  He’s done enough!  He’s been through enough!  I just cant.  Cant feel it, cant think about it.  Cant go on.  But, thats not an option is it?  I have to go on.  Go on pushing and fighting for answers and direction.  Go on driving to doctors here and there and running tests on this and that.  I have to push on until there are solid and clear answers.  I want to be able to hold my boy and not worry and fret and wonder.  I want to be able to rejoice in him playing and laughing and not wonder about what is going on in his body.    I need to allow myself to look past the problem, and see the boy.  Relinquishing that control completely, is a daily battle I fight with the Lord.  I want to hand him over and to understand that Levi is God’s son, not mine.  God has a plan for him.  He is not mine to control.  I try.  I speak the words and I try to own them.  I know the truth in my heart.  My human nature still fights for control, despite.

We were driving to Bloomington for what seems the 30th time in the last week, and I was thinking and mulling over everything as I drove. This song came on the radio.  At first I became teary eyed thinking about Hillary and her love for her unborn and understanding exactly how she felt.  And I listened, for probably the first time, to the words entirely. I was thinking to myself how well this could apply to other areas of my life.  My mind turned to Levi.  And then, from the back seat, I hear my Levi belting out the words with all of his might.  Singing, in that hoarse and raspy voice:

“Thy will be done.  They will be done.”

I had to pull the van over.  I sat there, on the side of the road, sobbing as he sang.  I cant tell you in words what happened exactly.  I felt a lightning bolt in my soul.  I couldnt breathe.  The tears flowed from a spot in my heart, so deep.  The Lord used that moment to break me.  Break me right in half.  Its as if this song is exactly my prayer for Levi and he used my sweet boy to answer me so clearly.  His plans are for him.  Goodness he has in store.  Ok Lord, I hear you.  Thy will, not mine.

I know you’re good
But this don’t feel good right now
And I know you think
Of things I could never think about
It’s hard to count it all joy
Distracted by the noise
Just trying to make sense
Of all your promises
Sometimes I gotta stop
Remember that you’re God
And I am not
So

Thy will be done
Like a child on my knees all that comes to me is
Thy will be done

I wish I had the satisfaction of knowing that there is a happily ever after coming.  I wish I knew that all will be resolved and well in just a short time.  I wish I knew that the resolution wasnt major surgery.  I dont know that.  All I know, is that I have to keep pressing forward and remembering that even though I cant understand why I, and Levi, need to be broken for the fulfillment of Gods perfect plan, His plan is bigger than I can see. His plan is good.  He loves Levi more than I can.  He loves him eternally.  No matter the outcome, it is good.  I choose to have faith  in that.

Thank you Lord, for using a simple song to speak to me so clearly.  I hear you.  Thy will be done.

Two steps forward, three steps back

The stress lately…its eating me alive.  Being at work two days a week seems trivial, but when you have been home for the last year, its a difficult adjustment.  Going to work this time of year, makes it exceptionally hard.  The garden is overflowing and needs weeding and picking and the food I pick cant actually sit on the counter forever.  The corn needs to be picked and cleaned and put away for the year.  The applesauce to be made.  Then peaches and green beans.  The kids want to go to the pool and to the park and I need to catch up on adult things.  I want to spend every minute of the last of our summer soaking them up.  Finding balance is difficult.  Im so glad this is short term.

Monday, I was working hard to get caught up on all of the adult things I had been putting off, like paying bills and making phone calls.  It was about 11am and I was still in my nightgown.  The dog was being needy.  Whenever I dont feel well or he doesnt, he sits on my feet.  He attempts to have a seat even when Im trying to walk.  He had been doing this all morning.  I was feeling a bit under the weather so I figured that was the reason.  He kept going to the door and whining.  I thought he needed to go out.  I told Eva to open the door for him and let him out and I would get my shoes and go out with him.  As soon as she opened the door, he took off.  Down the street and into the corn field.  Gus is a runner.  He runs often and has a history of running far.  He always comes home.  It was hot, I knew he wouldnt be gone long.  I started walking down the road after him calling.  No sign of him.  I was in my jammies, so I decided to get dressed before looking further.  I noticed on my walk back that the cat was in the tree, where she often goes when scared, but didnt think much of it at the time.  I went in the house, threw on some clothes and got in the van and drove to the neighbors looking for the dog.  Again, no sign of him.  I couldnt really leave the kids alone, so I drove back down the road and parked the van, knowing he would come back eventually.  By the time I was in the door, he was back.  We opened the front door to let him in and I heard Eva gasp.  “He’s bleeding!!”  Now, Eva has a long history of being ridiculously dramatic.  I was expecting a small scratch.  My jaw hit the floor when I saw gaping holes.

I brought him in and put him in the tub to rinse him off.  The bleeding basically stopped.  I saw at least three puncture wounds and they were deep.  I knew the fact that they werent bleeding was not a good thing.  I called my brother in law and asked him to come over to help with the kids so I could better assess the damage.  Gus started hyperventilating.  The more I tried to rinse and see where he was hurt, the more worked up he got.  I knew if i persisted he was going to pass out.  I decided to take him to the vet.  I knew he was hurt worse than I could see, when he couldnt jump into the van to leave.  He loves van rides.  Normally, as soon as I get to Bloomington city limits, he is going nuts.  Whining and barking and trying to see.  This time, silence.  I kept talking to the back of the van wondering if he was still alive.  I was so relieved when we got to the vet that he lifted his head to greet me.  But no barking, no vigorous pulling or frantic sniffing.  he just laid there limp in my arms.  I knew it was bad.  The vet whisked him away immediately and told me to go home, he would call when he could sedate him and assess the full damage.

At 5pm, we went back to pick him up.   Now, I love Gus, he was my first pet and has always been my baby, but Im not one to get overly sensitive about pets.  He’s “just a dog” but when they brought him out to me on that stretcher and I saw how hurt he really was, I turned to a ball of blubbering mush.  Three bites, six areas of wounds, each area with several open puncture wounds.  Most of his coat was shaved to reveal over 40 staples, 6 drains, too many stitches to count.  He literally was lucky to be alive.

As I recounted the happenings of the day, I started putting pieces together.  Last week something tried to get a chicken.  Chicken made it, but she’s mostly naked.  Feathers all over the yard.  The cat has been very edgy and skittish the last few days.  Gus hasnt run away in months.  That day, he gave no regard to my calls and took off with intention.  He knew something was out there and he went after it.  He was sitting on my feet to protect me!  Cue the guilt.  I had been so mad at him for running and interrupting my day.  I didnt really need him, my little 30 lb puggle, to take on the coyote hidden in the corn, but he did.  Dogs can really teach us big lessons.  No matter how I ignore him or get frustrated with him, he is loyal to a fault.  So many big lessons there.  He’s just a dumb dog, but he loves me and us, despite anything.  So much so, that he will stupidly try to pick a fight he wont win.

Bringing puppy home was an ordeal.  The kids were so upset by looking at his wounds.  He was still very groggy from anesthesia and nippy and growly.  I discussed with the kids that the meds may make him very grumpy and to just let him be this evening.  When we got home, he was all nuzzled under the back seat of the van.  I couldnt wake him enough to get him out.  So, we sat in the van with him for 30 minutes waiting for Darren to get home.  He couldnt come at him from behind because he would bite and there was no great way to grab him without causing pain.  He couldnt get to him from the front without taking out all 4 car seats and moving the seats all over the van.  What an ordeal!  We carried him in the house and put him in his bed in the kitchen.  He laid there limp and groggy all night.  The next morning, I had to go to work, so left the kids and the dog with my grandma.  I had no idea how ruffled the kids were by the  whole ordeal until I got home.  Grandma said the kids were afraid of Gus being anywhere near them.  Afraid to get bit.  Afraid to hurt him.  Afraid of him in his cone.  Afraid he would get blood on them.  She pretty much held the kids all day.  Poor Grandma.  Im sure she was more than ready to go home!

Things have calmed down a bit now, except with Emma.  Poor girl is simply terrified of everything now.  Every noise and shadow has her on high alert.  Gus went back tot he vet since he hasnt eaten since Monday.  We had to be gone several hours today, so thought it best to leave him in the care of the vet so he could get his pain medicine on time and they could monitor his need for hydration.  Tomorrow he will go back to surgery to remove the drain and close those holes.  Im so happy for this.  The purpose of the drains is to keep the wound bleeding and healing appropriately.  But keeping the dog off of my carpet isnt an easy feat!

In the midst of all of this, we learned that due to Darren’s job change, our medical insurance ran out.  We had been attempting to sort this all out since he quit his job, but have been getting the run around.  We have the option of COBRA, but its very very expensive.  Levi was supposed to see urology at Lurie’s Childrens Hospital today.  We have waited months to get a referral and an appointment.  So we went and we paid for the visit out of pocket…all $320 of it.  OUCH.  But it was worth it.

The doctor took a very good history of the incontinence issues that have been developing over the last two years.  He was very concerned at the lack of work up our previous urologist did.  He was concerned specifically that he had been potty trained and has lost ability over time.  He noted some abnormalities on the VCUG from 4 years ago that the previous uro had thought was not significant.  He disagrees, and actually feels its a very significant finding and likely related to the Ehlers Danlos diagnosis.  We know, based on his physical exam and the “pee log” we kept over the last week, that he isnt emptying his bladder.  So, the objective is to determine if this is because something is blocking the urine from leaving the bladder or if there is a neurological issue.  It seems most prudent to move from a least invasive procedure to most invasive if needed.  So he ordered some simple non invasive tests to rule out obstruction.  But, here we are without insurance.  UGH.  So, do we purchase COBRA and do the tests now, with our previous policy where the deductible is met, or do we wait until September when the new insurance with the high deductible starts.  Either scenario leaves us with a huge out of pocket expense.  I also havent done the stress test or brain MRI I need.  So, the total cost is something to consider.

Just this morning, I was working on writing us a new budget, now that Darren and I have started our new jobs.  I had a plan to have us debt free in a year.  Key point there is HAD.  The amount of money we have paid out in medical bills in the last 5 years is astronomical.  Im very thankful for insurance.  Very.  But, I wish it truly made medical care affordable.  So, in the last week, my dog has had very expensive emergency surgery.  We have self paid a specialist and the eye doctor for three of us.  I paid off one medical bill and im fixing to acquire several more.   Im trying not to complain and be thankful that we do have access to care and well paying jobs.  I fully understand these are “first world” problems.  I know there are many, many with more financial barriers than what we have.  But, Im frustrated.  I want to get answers for Levi and for myself.  I want to get past all of this.  I want to be able to move on.  I want to find financial stability.  Seems you can have one or the other.  Answers or income.  Not both.

Sometimes you just have days when the weight of the world gets heavy and you just need to vent.  I need a minute to breathe and regroup and refocus and those moments are few and far between in a mom’s world.  Hence, why Im typing this at 1am instead of sleeping.  I know all of this will work out in time.  I know me worrying wont help a bit of it.  I know.  I know. Being patient has never been something I was good at.  I suppose God will keep giving me opportunities until I figure it out.

Isaiah 40:31 But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

 

To the working and pumping mom, I salute you!

I made it through the first two days.  **giant sigh of relief**

Monday, I was up at 4:30am.  I do much better with a 4:30am bedtime instead of wake time.  Ive grown a whole new respect for my husband who does this every day.  Mornings are not for the weak.  I probably sounds ridiculous, its not the first time I have ever gotten up early, but its the first time Ive done it since the POTS became so severe.  I was really worried that I wouldnt be able to do it.  The showering and rushing.  Showering is the hardest thing most POTsies do.  But I did it.  And by nothing short of answered prayers and the grace of God, I managed to keep my heart rate under 150 and did not pass out!  Other than being long and painstakingly boring, Monday was uneventful.  Lukas took less milk than he probably should have, but he took the bottle and also ate some food!!  He really hasnt shown much interest in solids at all up tot his point, so I was excited to hear this.  I was so worried he wouldnt take the bottle well, since He’s never really used one.  I came home, helped cook dinner, worked in the garden, made birthday brownies and celebrated my big boys birthday, put the kids to bed, did my other motherly duties and crashed.  HARD.

Tuesday morning was a bit rougher.  Thankfully, I didnt have to get up quite so early.  Lukas woke when I got up, so I had to get ready with a baby in tow.  You know you are winning mother-ship when you can nurse and blow dry your hair at the same time. Or put on mascara with a grabby 9 month old on your hip.  As soon as Lukas saw grandma come in the house, he knew mom was leaving and he started screaming.  Screaming like I have never heard him scream before.  I grabbed my stuff and ran out the door as fast as I could before he got too upset.  I could still hear him screaming, from outside, as I got in the car to leave.  I realized, later that morning when I went to pump, that in my haste I had only grabbed my pump, but no parts.  Cool.

So, Its my first day at a brand new department.  I have no pump.  Im wearing an unlined, underwire bra.  All I can say is THANK JESUS, I had a jacket to cover up my unfortunate lumpy and  drippy chest.  I spent my entire day silently praying that no babies would cry within a 5 mile radius of me. I knew the waterworks would certainly ensue.  I made it though the day, uncomfortable, but dicreet…at least I hope no one realized how ridiculously tight my shirt was when I left…until I came home and saw my baby and immediately leaked about 100 ounces all over everything and everyone.   I spent last night with my baby and my heat pack fighting off a clogged duct.  Why do I even own an underwire bra?!  Cursed thing.

Im sure about half the people reading this are wondering why in the world I would share these details with anyone.  Welp, this is real life.  This is what its like to be a working, pumping mother.  A mother does not stop being mom just because she leaves her children in someone else’s care.  She just adds another hat onto her already full hat rack.  Ive been a working mom and Ive been a stay at home mom, and both are very differently so hard and both definitely have their own set of perks. But perhaps, the most challenging of both, for me, has been being a working and pumping mom.

In theory, working and pumping is no big deal.  Every few hours, you sneak away for a quiet 15 minutes alone, pump a little while you peruse Facebook and then carry on with your day.  Some days, its exactly like that.  But many days, Its worrying when you can take a break, trying to type over your flanges while you pump, coming back to 15 voicemails that accumulated while you were away.  Its forgetting pump parts at home and dealing with leaks and clogs.  Its forgetting that the dress you wore today offers no access except to take it off, so you sit in that freezing office in just your underpants, hoping and praying no one walks in.  Its worrying you wont make enough or scrambling to find something to store the milk in when you pump too much.  Its scheduling and planning every pump and feed to maintain that perfect balance between your baby needs and your body’s needs and your jobs needs.

Im no stranger to pumping at work.  Ive done it through three kids already.  One might say Im an old pro!  But, truth is, even though Im experienced, its still hard.  When I get home after a long day, I dont want to wash bottles and pump parts.  I dont want to take inventory to make sure all I need is in the bag.  I dont want to get up 30 minutes early to get in a pump before I leave.  I get tired of counting ounces in the freezer and calculating how much milk baby needs for the day.  Im lucky that all of my kids have adjusted flawlessly from breast to bottle.  Many moms dont have that luxury and deal with bottle preference and nursing aversions.  Truth is, pumping goes smoothly for me compared to so many.  Im able to pump enough, Im able to feed without difficulty when I get home.  I know so many work so hard and struggle so hard to make sure their babies are nourished while they are away.

This is all short term for me.  In a few short weeks, Ill pack that darn pump up once again, hopeful to never see it again!  But, to all of you long term working and pumping moms, I salute you!  I want you to know that your sacrifice is amazing!  Juggling babys needs, your own and your jobs needs deserves promotion to super hero status.  I resonate with you, in the dog days of pumping, when you are sitting naked in the office, cold and teary eyed because you are missing your sweet little ones first coos or first steps.  Ive felt that feeling of accomplishment when you pump six extra ounces for the day and Ive felt that feeling of panic when you come up six ounces short.  When your co workers snarl at you because you get six “leisurely”  breaks a day, you smile back with pride, knowing you are doing what is best for your baby.  When your boss asks for the 100th time if you are close to weaning, I hope you feel strong and empowered to tell him just how it will be.  When you are walking around work with that wet stain on your chest, or spill spot on your pants, I salute you.  Every pumping mom takes that walk of shame at some point.  When you spend your entire lunch break pumping only to spill it, my heart goes out to you.  When you forget your pump bag in the car Friday night and find a whole days work spoiled on Monday, I cry with you.  I rejoice with you, at the end of the day, coming home and throwing that soggy, milk stained bra on the floor.  There truly is no better feeling!!

No matter what your pumping journey looks like, you, my fellow pumping mama, are awesome.  Whether its half and ounce or twenty ounces, you made that for your baby and that is an accomplishment.  Here is my salute to you.  May your pumping days be productive, your milk never spilled, your pump bag fully stocked and your shirt always dry!  Pump on, my fellow milk making, working mama’s!

 

All The Feels

All the feels are getting to me today.  This has been a big month.  Im on overload.

Darren started his new job and its been great.  But its also required quite a bit of change here at home for things to run as smoothly as possible.  Being responsible for cooking dinner while managing 4 littles is a tad chaotic….ok, its borderline insanity.  Eva turned 7.  Seven!!!  How in the world is she 7?!  She is basically grown.  I kid, but really, she is so self sufficient.  She really is a tiny grown up in so many ways.  Levi is turning 5.  He’s no longer a toddler.  He is a little man.  He is testing those independence waters a little more every day.  I love to watch him.  I worried a long time he would never be independent.  But there he goes!  Lukas turned 9 months.  On my 29th birthday.  Very close to when our first angel baby would have been celebrating their first birthday.  For some reason, this all just felt so significant and beautiful and somber.  Lukie has healed my heart in ways I dont even have words to begin to explain.

Tomorrow I start my new job.  Getting through this hiring process has been a bit of a disorganized nightmare.  Very disorganized.  I had to call them, twice, to find out if I was even hired.  I accepted the job before I knew how much it paid, because no one seemed to have that information.  Then, I have had to make several calls to get requirements for orientation nailed down.  Finally, last Friday, I called again.  I was told to be at hospital orientation on Monday and to come Tuesday to the home health office for unit orientation.  They were to call me if there was any additional time needed.  Ok,cool.  Two days.  Two days away from the kids.  I can do that.  I started pumping ferociously to stock up enough milk for Lukas while Im away.  Any other time, that wouldnt be such a huge deal, but he’s been sick, and therefore, nursing constantly.  So sneaking in a productive pump has been a delicate balancing act.  I worked for months to decrease my supply to a manageable level.  Pumping now, and risking a possible increase seems like a scary prospect.  Monday night I get a call from the manager.  They are now requesting that I come to the Home Health office in Peoria 5 days a week from 8am to 430pm for a month.  EVERY DAY FOR A MONTH!!!  Uh…nope.  Cue full on anxiety attack.  No childcare, no milk, not ready, ahhhhhh!!!  So, once I regained composure, I called them back and advised them, that because I was not made aware of this requirement until 7 days before hand, even though I accepted the job in May, I would not be able to accommodate that.  Thankfully, they understood and we compromised on two days a week for a month.  Whew.

So, that should be all fine and dandy.  But, its not.  Emotionally, needing to be away two days a week is taking its toll.  Thats two days a week of my summer with Eva Im going to miss out on.  Thats two days a week that Im going to need to be away from Lukas.  It sounds so trivial when I type it out, but for reasons I cant fully explain, my heart feels its anything but trivial.  Lukas is my last baby.  I have been so blessed to be able to be the constant in his life.  our days arent rushed.  There is no required schedule.  Its just us, fluidly doing life as a connected pair.  This is a luxury I didnt have with the other kids.  I wasnt emotionally prepared to have to sacrifice a second of us.  You get to be “us” with your baby for such a very short time.  In the grand scheme of things its no big deal.  It truly isnt.  Thats eight days.  Eight days I get to go and do grown up things while my babies are cared for by loving family members.  Its all going to be fine; probably good for all of us.  But at the same time, its just not fine.  I wish I would have known in May.  I would have had time to adjust to the idea.  But who am I kidding, it probably wouldnt have made a difference.

Monday is also Levi’s 5th birthday.  I promised myself I wasnt going to miss any more birthdays.  I hate that I cant be with him on his birthday.  He wont care, he will be with grandma and she will make him pancakes and all will be well in his world.  Pancakes and grandma are two of his favorite things.  But, my heart is breaking over it.  *I* want to make him pancakes.  I want to celebrate his day with him.  I want to bear hug him when he wakes up and sing happy birthday. Me.  The whole purpose of a work at home job is to not have to miss out.  I promised myself I wouldn’t miss any more birthdays.

The kids are anxious.  They hate the idea of me going back to work.  They dont understand that this wont require me to leave them after this month.  All they know is they want me here.  I never thought working weekends was an issue for them.  I was here all week and they had daddy all weekend.  But, when I told Eva I took another job, before I could even explain what that entailed, she was in tears.  “I dont want you to have to work, Mama.  I want you home.  Please dont go.”  The little ones act like once I leave, Im never coming back.  All the memories of all the mornings I peeled clingy babies off to go to work against my will come flooding back.  I promised myself those days were over.  Knowing Lukas has been sick makes leaving even harder.

I realize that you cant just start a job.  There has to be some training.  I knew there would be some time away needed.  My brain gets it.  Its my heart that cant get with the program.  I realize that this job is going to be a tremendous help to my husband and our family.  I know this is a necessary step to a better future.  I know.  Im glad to do it.  Im even excited to do it.  I miss being a nurse terribly.  But, at the same time, Im selfishly grieving going back to work.  Even if the going is only for a very, very short time.  After this month, Ill be working from home and I will be here…and probably wishing I could go in the office for some peace and quiet!

Change is hard.  Even when change is good and necessary.

We are going to celebrate Levi’s birthday today.  Lukie is doing quite a bit better with the breathing treatments.  I have pumped enough milk to cover these first two days.  Its all going to be ok.  But I still may shed a few tears between now and tomorrow night.  I just love my babies so much it hurts sometimes.

Isnt motherhood the most conflicting state?  You beg and beg for a second to yourself and then when the times comes, you grieve the second lost.  Its no wonder we moms are half nuts.  Our hearts and our brains have no idea how to communicate!

So if you think of me tomorrow…blubbering in a pumping room missing my babies…say a quick prayer for me to get my act together!