Saturday, September 29, 2012

Giving in, not giving up

Last week I felt like the world shoved a dagger in my heart.

 My mom is not a candidate for a transplant.

Through all the testing we discovered that her blood is "sensitized" and there are too many antibodies and antigens in her blood to ever find a donor heart that her body would accept.  The words unfortunately seem more true as I type them out, and it was slowly starting to sink in over the weekend and beginning of the week as I cried numerous times and began to grieve the loss of the hope that I had for my mom to be around for many years to come.  My mom had told me after leaving the hospital that she didn't think she would get a heart and that her time was limited.  Sometimes I want to tell intuition to "suck it".

My mom has not been doing well since leaving rehab, and so on Wednesday night we returned to the hospital for a "tune-up".  I hate hospitals.  I don't really know why I like to work in one.

After being told that the heart transplant was off the table, we started to shift our focus to quality of life, rather than quantity.  We no longer wanted the focus of each week to be doctors apts, but rather what would bring my mom joy.  Unfortunately it was hard to have much joy when she continued to get weaker and puke almost daily.  So after talking with the cardiologist, we made the really hard decision to come back to the place we now wanted to avoid forever.  The assumption was that all the nausea was from the heart failure and the goal was to come down to have a PICC line placed and to be started on IV medications that would help the heart to contract better to improve my mom's quality of life at home.

Nothing ever really goes according to plan.  After the many heart tests, it was determined that it was not from the heart failure and that they do not want her on those meds at this time.  Instead my mom was very dehydrated and needed iv fluids and a blood transfusion.  We had high hopes of going home on Friday after the transfusion, but they started antibiotics for her foot, and unfortunately she was not able to keep them down.  So after being given our discharge instructions and packing up all of our bags, we were told that it would be best to stay at the hospital until they figure out the nausea.

Mentally, I got it.  But emotionally and physically I was wrecked.

Over the past three days we have made some really hard decisions.  We got to speak to the specialists that place the heart pumps, and she was able to decide that it wasn't a good option for her.  Besides a transplant, that was really our only life saving measure on the table, and it really wasn't a good option given her current condition.  So my mom also decided to sign a DNR and to have the defibrillator turned off in her chest.

Please just turn the dagger that was in my chest.  Granted, I fully back and support my mom's decision.  It is the same one I would have made for myself.  But it doesn't make it hurt any less to live in this reality.  It doesn't make me any less furious with God for not taking my mom when she was coding three months ago.  I am so grateful for the conversations we have had since then and the support and love that has been given to my family, yet it has been do incredibly difficult to watch my mom walk this road.  Knowing my mom was fully and comfortably sitting next to her God would have been a much easier pill to swallow.

So this is the new road that we are learning to walk with grace, or cuss words, whichever I may feel like in the moment.  Because as I bring one life that I will surely love and cherish into the world, I am on my way to losing another.  The hardest part is not knowing if we will have weeks or months or years, or what that time will look like.  I hope and pray that my mom has the strength to truly live out the rest of her life, to not have to sit in a bed puking all day, but to be able to come to my delivery, go to a pumpkin farm, and spend time with people that love her.

As I was hugging her goodbye yesterday so that my cousin could stay with her for the night and I could take a shower I had a dejavu moment.  When my mom was sedated and really critical in the ICU, I told her in one of her semi-conscious moments that if it didn't look like she was going to get better, I would make sure they would stop it all.  The machines would be turned off and the tubes would come out.  In that moment my mom let tears fall down her face knowing she wasn't trapped.  It was the same cousin that stood next to me as I whispered those very sacred words to my mom three months ago.

So last night I hugged my mom again and we both cried our eyes out as I again promised to take her home and let her go.  Whatever she wants.  Intervention by intervention we will decide what will provide quality vs take away from it, and we will do our best to give in.  We haven't given up.  I still pray for a miracle, and for time, and for healing.  But I will also give in to the fact that my mom is really sick.  That while all of us have numbered days, I am keenly aware of how numbered hers are.  So I will be ridiculous and inappropriate in the moment.  I will annoy the shit out of doctors that are set on fixing our problems or running one more test.  I will snuggle with and sleep next to my mom with every opportunity I get. I will watch my mom as she sleeps and study her features, so that I don't forget the laugh lines on her face, or the way she would always scratch my back as a kid with her long nails.  I will pray big prayers, little prayers, and swear filled prayers as my heart continues to break and to heal.  We will continue to give in to the love and support and prayers of people around us.

Unfortunately my face looks a bit more freckled today from all the broken blood vessels that have developed through my ugly cries.  I wanted to be that story of victory.  The story where all the prayers were answered and we could look back with awe at where we had come from.  I am going to trust that God is as present in our story now as He would be in a transplant.  For all we know my mom would have never found a match, or would have died in the ICU after having a transplant.  We can't know the future.  So I will trust that this is our story for a reason.  I will run the gauntlet of emotions as we cycle through this crap storm.  I will love my mom to pieces.  And I will continue to freckle my cheeks and eyelids with the ugly cry.  Because that is what I do when my heart breaks.  I cry and say words that I shouldn't type on the internet, but mostly I cry.

Please continue to pray for miracles, but also for healing in the small moments.  Yesterday I sat and prayed over and over again that the nausea would go away.  My mom probably thought I was sleeping as I lay with my eyes closed next to her, but I wasn't.  I tried to conceal the tears as I prayed for God to take away the nausea.  I will continue to pray more and more for the little things, because in the moment, those are the things that matter.  I will pray that God meets my mom in those moments and that in the months to come she experiences a peace, a love, and a comfort that she never has in the past.

Please pray that we will know how to love my mom and that I will be able to integrate such extreme joy and sadness into my life at the same time.

Thank you again for all the prayers, and love, and support.  Hopefully we will have months to years with my mom, and if not, I pray that the moments that we do have are amazing.

Thursday, September 20, 2012


This week has been wonderful, and awful.  My mom has been home since Friday and I cannot explain how much better it is to see her outside of the hospital.  No more hospital meals, late night vital signs, sharing a room, visiting hours, or six am wake up calls.  While a hospital is the place that sick people need to go, "healing environments" is one of the last phrases I would use to describe it's ambiance.  Because of the lovely hospital experience, I have this semi constant dread of when we will have to go back, whether it is for a heart transplant or something else, it scares the crap out of me.  I don't want to do it again, and I know we will have to.

 It was awesome to be able to bring my mom to my house for a day.  I could show her all the progress and the nursery.  I could tuck her in my bed for the many naps she needs to take.  It was hard to remember how sick she is when she started puking, but even she said it is better to puke at home than in the hospital, so we have that going for us.

While it is wonderful to have my mom at home, it is also scary.  I'm afraid we will miss something, I'm scared that the other shoe will drop again. I'm afraid we will never be able to physically return to the mom I once had.  Granted, I am so thankful to still have a mom that is alive, but it is hard to adjust to accepting the level of humanity we need to live in and acknowledge when someone is sick.

 I spend my nights making people feel normal.  Most everyone knows I am a labor and delivery nurse.  Our job is to make the extremely uncomfortable aspects of our job as normal and comfortable for our patients as possible.

Yes friends, it is normal to spread your legs and expose the most private parts of yourself to a room full of people.  I will hold your hand through it.  It is normal to take a crap right in front of those same people.  Or to puke your brains out.  It is normal to be scared and nervous and emotional as you lose control of your body and give into what it needs to do to bring new life into the world.  All night long I try to make people feel like none of this is a big deal, because while we might have learned from our culture and our previous experiences that many of these functions of our body are shameful, they aren't.  We all do it,  we all puke and poop.  We all feel fear and anxiety, and hopefully extreme elation when that new little life takes its first breath.  

But sometimes we forget.  We forget how the same we really all our.  We forget our humanity.  

We're trying to figure out care for my mom.  She doesn't need a nurse, just someone with her at all times to help to get up to get food or go to the bathroom.  And I must admit, it has been hard for me to acknowledge my mom's humanity.  I get scared that other people won't be able to make everything feel normal for my mom like I do, or like I hope I do.  I get scared to ask for help because I don't know who is comfortable holding a puke bucket or emptying a commode.  I don't know who is up for the challenge of embracing the true human needs of my mom, and the last thing I want is for her to feel shame when she needs help. 

In our culture I think we pride ourselves on our strength and our ability to care for myself.  I am learning that it takes significantly more strength to let other people care for us, especially when we do not have the ability to do it ourselves.  Letting people in, and embracing our most basic needs takes strength, and I have been blessed to watch my mom be a strong woman.  I have been blessed to be reminded of our humanity.

The cycle of life is so obvious yet so hard.  At some point we will all die or be in my mom's shoes.  It will happen.  Our bodies will fail us.  Yet so often I am able to live with this powerful denial that it won't ever happen to me.  I want to celebrate the fact that my mom is here and that we get to care for her.  I want to reframe my job as a privlage to be able to care for people in their most vulnerable state and during a life changing moment of their life.  

So here is my big ask.  We need help.  We need help caring for my mom.  You don't need any skills, just some compassion.  We will be putting a schedule together, so if you are able to hang out with my mom for a couple hours, one time, or every other week, we would absolutely love it.  We will also need help occasionally to get her to doctors appointments if you felt comfortable doing that.  Please know that you might have to hold a puke bucket, wipe a tear, or empty a commode.  Send me an email if this is something you are interested in, and thank you in advance.  Thank you for reading and thank you for praying.  Thank you for carrying us this far and for hopefully walking with us until we can get my mom a new heart.  We should know by December if we are able to get in the transplant list.  Until then we are going through the many tests that need to be done and trying to figure out the best way to keep my mom stable until then.

Big ask nĂºmero dos.  We need financial help and would like to set up a fundraiser for my mom to help her obtain a heart and live until then.  This is completely foreign to us and I am open to all advice.  Please email me if you have any ideas or suggestions about the best way to do this.  If you are willing to help at all with your gifts or talents, I would love it.  Hopefully in the next couple of weeks we can have something figured out, but until then, I would love any help, advice or suggestions, to walk this very unfamiliar road.

I want to make up a new word because thank you really never seems to be enough.

Thursday, September 13, 2012

Homeward Bound

My mom is coming home tomorrow.  Really and truly.  I kind of still don't believe it.

Similar to how I still cannot grasp that this is our life.  That my mom is here and alive, but things are so different.

We were driving to see my mom before my baby shower on Saturday and I had a "what the expletive" moment.   Are we seriously driving to see my amputee mother who is most likely going to die without a heart transplant?  My mom who has been admitted to a hospital for almost 90 straight days.  When in the heck did this happen?  Oh, and we are having a baby?  Really, I'm pregnant?  Maybe I should make that announcement again because it surely didn't set in yet.  Can I just gestate like an elephant? Because I am pretty sure I have at least six more months left in me.

I got angry when Jock Jams "Are Your Ready for This" came on the radio.  No longer will I listen to 101.1.  In case you don't know what I am referring to and aren't transported back to the days of Michael Jordan, I added it to my play list for your listening pleasure.  You're welcome.

No, I am not ready for this.  I wasn't ready three months ago and I sure as heck am not ready now. So get your crappy song off the radio and cut a girl some slack.

At least I didn't think I was ready.  While you can never truly prepare to watch a giant male nurse jump on your mom's cracked sternum and begin chest compressions to save her life, you can surround yourself with people who jump in next to you in that moment.  People who love you and challenge you.  People who pray for your and drop expletives along side you as you realize that the pretty picture you once painted of your life may look a little different now.

So while you can never really feel ready, I know I still stand on solid ground.  And I do not stand alone.  I will forever be grateful for the support we have in our lives, for the people that love our family and love my mom.  This has been the hardest three months of my life, but I have had some of the richest moments.

I am petrified and ecstatic of this next step.  My mom just texted me "13 hours".  That is all that remains.  I bet she doesn't sleep tonight because it will be like Christmas morning tomorrow.  I bet I sleep like a freaking rock because I worked last night, got next to no sleep today, and just called in sick because I think I might puke on a patient with this migraine.  Honestly, I am really proud of myself for calling in sick.  I am reminding myself it is OK for me to take care of myself and my unborn babe.  It is much easier for me to take care of everyone else, but at some point, I will burn out.  

So tonight I will rest.  I will rest in the fact that my mom is FINALLY coming home.  I will rest in the fact that I am still pregnant.  I will rest in the fact that I am a child of God and that He has not walked away as my world crumbled around me.  I will rest next to my amazing husband. I would not want to walk this journey hand in hand with anyone else.  Tonight I will rest.  Because tomorrow and the weeks to come will be freaking insane, in a mostly good way.

Please pray for us as we go to follow up appointments, as we continue to pursue her candidacy for a heart.  We still have not been approved for medicaid or disability, and it is an uphill battle.  Please pray that it falls into place.  We will be having a fund raiser to help with some of the medical costs until that comes through, please pray for provision and grace, as asking for help is not my strong suit.  Please just pray, we appreciate every single prayer, big or small, whispered or shouted. One day at a time we will march on, and I cannot wait to march my mom's skinny butt into my front door tomorrow.  I cannot wait to show her our nursery.  I cannot wait to see her on our terms and eat good food.  I seriously cannot wait.

Take that Jock Jams.

Friday, September 7, 2012

Hints from the Universe

You know what you shouldn't do when you are 8.5 months pregnant?  Decide that you are the best person to edge the ceiling of your bedroom.  Now, in our family, Jon is the roller and I am the edger.  We were really lucky and his mom and sister offer to roll the bedroom.  Now being the over zealous person that I am, I said I would still edge.

Because I am a control freak.

Well friends, I was spited.  About 3/4 of the way done with the edging, I had my bigger than normal butt up on the ladder, and the tray part, where the semi full can of paint was sitting, gave out.  It was in freaking slow motion.  I tried to grab for the paint can, but I didn't want to fall off the ladder. (I would really love all the flack I would get at work if I had to come in to be monitored because my stupid self fell off a ladder).  So instead I watched the paint can fall painstakingly to the beautiful wood floor.  The only thing we have invested in since buying the house are our floors.  The house was covered with carpet which we ripped out the night we purchased the home to have the floors underneath refinished.  I love my wood floors.

Topple, topple, turn, splat.  On one of our only worldly prized possessions.

Normally being a hormonal pregnant person, I would sob my face off.  Instead I said a few words I am not super proud of and trashed some our towels for the sake of our floor.

For the most part I got all the paint up, and luckily it happened in the only spot where the bed can go, so even if I didn't, it would never be seen.

So, I get it, I admit defeat.  I will back down and chill out, kinda.  I will at least do my best.

We are still in a holding pattern with my mom.  My shower is tomorrow and I will do my best to keep it together in front of the masses, but I am so sad she won't be there.  I am waiting to hear from the social worker today, but as far as I know, her tentative discharge date is still next Friday.  One week.  Hallelujah.

When she comes home we will need help with 24 hour care, so I will post more info and a schedule and we would completely appreciate any and all help.  It will be a learning experience for all involved to figure out what she has learned to do in rehab and how to translate that into being home.  She had her follow up apt with the surgeon that amputated her foot, and that all looks good.  So we will see him again in a month.  Hopefully I will have more information about what home looks like by the end of the day.  In the mean time, I am going to go refinish a bedroom set Jon and I were gifted with.  I won't climb on a ladder to do it.  Promise.