Praying for Nancy-Happy Birthday Mom

prayingfornancy[at]gmail[dot]com

Please continue to send pictures as you pray.  

Celebrating my mom's birthday and baptism today.  Hoping for 54 to be the best year yet. Thank you for all the love and support. For those that want to see the best birthday card I have ever bought and aren't offended by our dark sense of humor, scroll to the bottom :)

Hoffman Estates, IL

 Clinton, WI

Buffalo Grove, IL

 Willow Northshore

 Willow Northshore

 PA and NJ

 Taiwan

 Boulder, CO

Chicago, IL

 Elk Grove Village

Aurora, IL

 From Elgin to Arlington Heights

Elk Grove, IL

 Elk Grove, IL

 Canadian Rockies

 Lake Zurich, IL

 Evanston, IL

 Glenview, IL

 Deerfield, IL

 Sox Game

 Statesboro, GA

 Alexian Friends

 On the beach

 Deerfield, IL

 Ft Myers, FL

 Atlanta, GA

 Glenview, IL

 Milwaukee, WI

 Deerfield, IL

 Rockport, TX

 Viera, FL

 Schaumburg, IL

 In the crapper.

In the sunshine

 Indianapolis, IN

 Crazy Town :)

 Elk Grove Village, IL

 Elk Grove Village, IL

 Evanston, IL

 Hoffman Estates, IL

 Hoffman Estates, IL

 Hollywood Hills, CA

 Pittsburgh, PA

 Skokie, IL

Elk Grove, IL

 Barrington IL

 Bartlett, IL

 Champaign, IL

 Elgin, IL

 Palatine, IL

 Schaumburg, IL

Barrington, Il

 Elk Grove Village, IL

 Elk Grove Village, IL

 Elk Grove Village, IL

Arlington Heights, IL

 Des Plaines, IL

 Pismo Beach, CA

 Statesbora, GA

 Plainfield, IL

 Roselle, IL

 Roselle, IL

Alexian Brothers Medical Center L&D

 Alexian Brothers Medical Center L&D

 Philadelphia

 Carmel, Indiana

 Mundelein, IL

 Alexian Brothers Medical Center L&D

 Northbrook, IL

 Wood Dale, IL

Alexian Brothers Medical Center L&D

 Barrington IL

 Barrington IL

 Barrington IL

 Barrington IL

 Buffalo Grove, IL

 Evanston, IL

 Evanston, IL

 Des Plaines, IL

 Des Plaines, IL

 Evanston IL

 Elk Grove Village, IL

 Elk Grove Village, IL

 Evanston, IL

 Galyon Family

 Glen Ellyn, IL

 Glen Ellyn, IL

 Evanston, IL

 Melbourne, FL

 Minnesota

 Evanston, IL

 San Francisco, CA

 Evanston, IL

 Elk Grove, IL

 Evanston, IL

Arlington Heights, IL

 Disney World

 Gurnee, IL

Everywhere

 Gurnee, IL

 Schaumburg, IL

Alexian Brothers Medical Center

 Bar Harbor, Maine

 Baudette, Minnesota

 The Bodie Family, Florida

 Champaign, Illinois

 Chicago, Illinois

 Disney World, my mom's favorite place

 Elk Grove Village, IL

 Elk Grove Village, IL

 Elk Grove Village, IL

 Oswego, IL

 Northbrook, IL

 Northbrook, IL

 Des Plaines, IL

 Hanover Park, IL

 Elk Grove Village, IL

 Niles, IL

 Elgin, IL

 Traverse City, MI

 The Maloney Family

 Itasca, IL

 Elk Grove Village, IL

 Hanover Park, IL

 Park Ridge, IL

Happy Birthday sweet momma.  So thankful for the opportunity to celebrate.
prayingfornancy[at]gmail[dot]com

Next Step

Thank you from the bottom of my heart for all that are praying for my mom.  While originally I wanted to surprise my mom with everything, our plans have changed, and I think she needs to know now how covered in prayer she truly is. I still want to celebrate her birthday, but more than that I want to love her through each difficult day ahead. If you have a moment please snap a picture with your phone and let her know you are praying.  It is so good to match faces with places and know that we are so covered in love and provision.  Thank you for your help, your love, and your support.  Please continue to email photos to prayingfornancy[at]gmail[dot]com.  We are truly eternally grateful.

That being said, we are at a new crossroads.  Yesterday we were told that my mom had weeks to months to live without a ventricular assist device or a heart transplant.  We were told that all options at this hospital have been exhausted and that she needs to be transferred to a university hospital.  We were also denied a transport to Loyola because she is still "medcaid pending."  It is so hard to know what is God's plan and what you need to fight for.   After many prayers we were accepted at University of Chicago and are going to be transferred there as soon as a bed is available, hopefully today.  

My mom is scared.  The day has been filled with panic attacks and ugly tears.  Even when you know this is what needs to happen, it is scary to go to a new place, with all new doctors, all new nurses, and no family down the street.  All she has known for the past two months is this place, and these people.  We have come to trust and love people and it is hard to give that up.  But at the same time, we are extremely grateful for the approval of transfer to this new hospital, even while all the paperwork is still in process.  We are choosing to trust that this is where God wants her to be.  

Depending on what the new doctors determine, we will make new plans and say new prayers.  She cannot be put on a transplant list until medicaid goes through, so please continue to pray for that specifically.  Please pray for the transfer to go smoothly.  Pray for good communication between doctors and nurses as so much has happened over the past two months and I am scared something will slip through the cracks.  Please pray for the people that have cared for my mom to be blessed.  Please pray that we can be a blessing in their life in some way.  Please pray that our decisions will be clear cut, that if we are not meant to move forward with these really big and scary procedures, that we will know and will have peace.  I will give a better update in the next couple of days when we know more of what our plan is.

I really wish I had words other than "thank you."  Thank you does not seem big enough right now, nor does it cover how I truly feel.  

But since I have no other words, I will continue to repeat "thank you."  Thank you God for this sweet moment. Thank you for giving me another chance to climb in my mom's bed.  Thank you for the baby in my belly that kicked her in the butt.  Thank you that we were accepted at a hospital.  Thank you for holding us close through the ups and downs and the very real conversations we have had about what my mom would like to happen before she dies.  Thank you for all the moments we will have, whether it is just a couple more, or a couple years.

I will upload any and all pictures to my blog for my mom to see in those moments of panic and I will still put them all together in a book for her next week.  Thank you again in advance.  One moment at a time we will march forward, and I am again so grateful to not have to walk this journey alone.

Honestly, and a Secret.

Honestly, I don't feel up to making it through today.  Maybe because I have felt like having a mental break down since last night and tried to sleep it off.  I want to go sit in the shower and cry for the day, but really that wouldn't change anything or help me at all.  So instead I'm going to write it all down and try to word vomit out the stress, anxiety, and sadness.

My mom had a another heart attack.  Technically, the stent failed.  Regardless, heart damage is heart damage and it blows.  So after our unproductive week in rehab, we ended up in another angiogram where they were unable to remove the blockage and unable to do much more at this time.

Due to this heart attack she is also in a more severe state of heart failure, so the plan is to try and manage her heart failure with different and stronger medications to try and figure out what the plan will be in the future.

Being back in the hospital instead of rehab feels like we were just kicked in the chest.  Wrong direction, friends.  Granted, it was obviously what needed to happen and where she needed to be, but it feels so defeating.  I was getting ready for my mom to come home and now we don't know when that will be.

Her future ranges from being able to
A: Live in congestive heart failure
B: Having another angioplasty down the line where they try to remove the clot from a different direction
C: Having another open heart where they remove all the scar tissue from heart attack numero uno, and at the same time graft the R coronary artery which is currently closed
D: Possibly a ventricular assist device to hold her over until a heart transplant
E: Going home to heaven.

That last one holds a sting.  I know I proclaim my beliefs of quality over quantity, and I stand fully behind them, and I stand fully behind my mom's decisions about her care.  I am ready for my mom to no longer suffer.  I am not ready to lose my mom.  Who is?  It might be this month, five years, or twenty.  We have not been given a time frame, just the plan to wait and see.

This plan pushes me to my limits.

Welcome to limbo land.  This is where we shall continue to sit.  Maybe we will make it to rehab, maybe not.  Maybe we will make it home, maybe not. Maybe my mom will meet my babe, maybe not.

I hate limbo land.

There are so many things that I don't know right now, but there are a couple things that I do know.  My mom has a 54th birthday on August 17th.  Since having a massive party is a little bit out of the question, I figured we could rock her socks, or sock in another way.

Birthdays have never been a huge deal in my family, but when you realize you might not get as many more as you were once expecting, I have a new found desire to make this the most amazing day of my mom's life.  Whether she has many more years to live, or we won't make it through this one, I want her to know the impact she has made through her life, her kids, her family, her love, and her God.  I want her to know how God used her in this world.  I want her to know if she made an impact in your life.  I want to see the impact of community and living this thing we call life, together.

If you didn't know my mom but have heard of our story, I would like her to have some idea of how incredibly covered in prayer and love our whole family has been.  I don't think she has any clue of the magnitude. I want her to know her impact; how much she matters. I don't think she realizes how many other people have been willing to pray for miracles on our behalf when we feel at the end of our rope.

My mother and my family are far from perfect, but we have been given the gift of a second chance, at least in this moment.  And I don't want to waste it.  I don't want to stop praying for the miraculous story of love and healing, but at the same time, I don't want to live in denial about the severity of our current situation.  I can write a beautiful eulogy for my mother, but I am blessed with the chance to tell it all to her face.  I have the opportunity to say every last thought and prayer that I have ever held back.  My mom will not die without knowing my heart, and I knowing hers.

I need your help.

My family has a slightly twisted sense of humor and I would like to name this little project: "Rock Nancy's Sock Off."  You know, since she can only wear one right now.  Maybe that is a little too twisted for you, in which case, you can call it "Operation Birthday".  Either way, I would like it to be a SECRET.  I would like to make two books for my mom.

For the first book I would like to include letters from everyone willing to write them about how she has impacted your life or what she means to you.  Go ahead, make her cry.

For the other book, I would like to be a photo album where I can include pictures of everyone near and far that has been praying for her.  In the picture can you make a small sign saying "Praying for Nancy, from ______", and then fill in your location.  It can be a picture of you, your church, something pretty. Whatever floats your boat.

And then finally, on her birthday I would like for her close family and friends to come read their letters to her.  We will do the ugly cry together and she will kill us for certain, but I don't care.  I refuse to give up this opportunity because of how much it will hurt to sit in that much love.   As awesome as that moment will be, I also know there is a cap to how much and how long she will be able to sit through it.  If you are interested in option three please contact me and I will do my best to piece together as many people as can share in an hour on her birthday.  Please don't be upset if I am not able to have everyone come.  The hospital room is only so big and her very damaged heart can only handle so many minutes of the ugly cry.  

So with all that being said, I look forward to seeing the power of community.  I look forward to sobbing my face off, some more.  I look forward to my mom being able to die now, or years from now knowing that her life mattered.  I look forward to the miraculous story of healing and hope, or the peace that will eventually come for my mom.

If you are able to write a letter or take a picture please send it to :  prayingfornancy[at]gmail[dot]com
To be able to make it into the book I need to have everything by noon on August 15th.

If you are able to share this story, please do.  Please  keep it off of Facebook, if you are friends with her, as she sometimes checks in on there when she is feeling OK.

Thank you.  Thank you for reading my lengthy word vomit.  Thank you for drying my tears.  Thank you for loving my family and my mom.  Thank you for your prayers.  Thank you for the big prayers that sometimes felt impossible for us to pray.  Thank you.

If you need to know the beginning of this story, you can start here: Nancy's Story
It has been quite the ride, but I have never felt more covered in love in my life.  Regardless of the outcome, I hope our story matters.  I hope we can walk this road with grace and peace.

I hope that love wins.

** Here are some picture examples.  Thank you to those who have already sent some.  Feeling very blessed**

Wednesdays and a Thank You.

Wednesdays are apparently the days for drastic change for my mom.  We were admitted to the hospital on a Wednesday, and exactly 4 weeks later is when we were transferred to rehab.  We are happy, and scared, and excited, and petrified for this next step.  I think a lot of the fear comes from the unknown.  Not knowing how she will do, not knowing how she will heal, not knowing when she will feel like herself again. I cannot believe it has been 4 weeks.  It has felt like both the longest and the shortest for weeks of my life.  The me who woke up that Wednesday before everything transpired seems so far away.  Replaced with a little girl who cries a bit easier and who is desperately awaiting the return of normal.  This is the new normal friend, time to get on board.

My mom is still really sick and because of the different meds, she spends much of her time itching and nauseous, and we are now having difficulty keeping her blood pressure high enough to get out of bed.  It's frustrating because we want her to be able to take as much away from rehab as possible, and when you are puking you are not able to learn how to walk again.  I want to see her get better.  Now.

Hopefully I will soon acquire more patience.

Just some medical updates for those that are following and praying.
She will forever live with congestive heart failure, though we hope as she continues to improve she will only need the support of meds.
Her kidneys are still recovering, but the permanent dialysis line was removed.
She chose to have a PICC line put in.  Not sure how long it will stay, but IV starts and blood draws were getting traumatic and taking at least 6 tries every time.  She needed them daily.  With the PICC line they can draw blood and give IV meds whenever needed.
They stopped her IV antibiotics yesterday.  I'm hoping this helps with the itching.  I'm nervous that she might develop an infection without them, however this is not something we want constantly pumped into her system.
We are going to continue to wait on the foot.  Not sure what will happen there, but the last time I saw it the top knuckles of her toes had started to turn pink.  We are cautiously optimistic.  Most likely something will have to be amputated, but we will wait until there is a need and give her tissue a chance to regrow.
There is something going on with her liver.  We will follow up outpatient.
She has an internal defibrillator/pacemaker.  We are hoping it never has to be used, but it is there if she needs it since she went into a fatal arrhythmia in the hospital that they were not able to change through less invasive measures.
She needs to eat more, but struggles with the nausea and the fact that she eats three bites of food and calls it a meal for the past month.  She has lost probably 20 lbs in the past month.  She has a few meal requests if people are willing to cook small quantities :)
She is now doing physical therapy, occupational therapy, and speech therapy while in Rehab.
Rehab will most likely be 2 weeks. So possible discharge next week.  That is exciting and scary. We will need help.  She will hopefully be able to learn to walk with a walker but she will need someone around often.  Visitors and rides to the doctors will be much needed and appreciated.  Let us know if you are at all able to help :)


One glimmering awesome moment: my mom was able to shower yesterday for the first time in a month.  Granted she almost passed out trying to make it back to the bed, but she showered none the less. We will take little awesome moments all day long.

On a completely different note, I want to cry my eyes out and say thank you for everyone who has helped us.

Thank you for the meals that were brought.
Thank you for the ceilings and walls that were painted.
Thank you for the plants that were dug up.
Thank you for the horrendous wall paper that was ripped down.
Thank you for the gifts you have bought for us.
Thank you for the cards that were sent to my mom.
Thank you for the help moving all of my moms earthly possessions into my garage and basement.
Thank you for the prayers.
Thank you for the encouragement.
Thank you for holding onto hope when we couldn't.
Thank you for not expecting us to walk around happy.
Thank you for holding me when I cried.
Thank you for the offer of rides down the line.
Thank you for loving me, my family, and my unborn babe.

I don't think we can say thank you enough.  This is a crappy road to walk and I cannot imagine how it must feel for those who have to walk it alone. I am learning more and more that life is meant to be lived within a community. We are so grateful to have the love and support of our family, friends, and community.  People who have known us for a long time, and people who are just hearing our story now.  Thank you for coming along side us.  We have a lot more walking to do, but I would rather have a long walk together than a short one all alone.  God is still good.  My mom is still here.  And we will chose to keep putting one foot in front of the other.

Last tangent.  We were supposed to have our annual Goat Fest on August 4th but it has been cancelled.  We would love to just postpone it and do it in the fall, but we are not sure what that looks like with the impending birth of our child in October.  So for right now it is on hold, and we will hopefully be able to throw a rocking party next year.

Waiting

Part of me wanted to wait to write anything until I had some really awesome, good news.  So instead I just haven't written anything, honestly because I just don't know what to say.  Waiting is hard.  Living day by day is hard.  I am a die hard planner, and I can't tell you what is going to happen tomorrow.  Living in this limbo land is taking a toll on all of us, including my mom.

I wish we could all stomp our feet and take a break.  Make this go away for just a little bit.  Give her a different view besides the parking lot for an hour.  In the beginning we were just grateful for her to be alive, and now we are starting to grieve the life we won't necessarily get back.  This life may be more rich, more meaningful and better, but it is unknown, hard, and scary.  So we will keep marching, and learn to figure how to play these cards we were dealt.

We are waiting still to make a plan on her foot.  There was a chance nothing would happen during this hospitalization, but I'm starting to wonder if they will move forward before she goes to rehab.  In the meantime we are trying to get her cleared for rehab to start early next week.  She has not needed dialysis in the past 6 days, so we are hoping they can remove that line before she goes as well.  Good little steps, but not the big leaps and bounds that fuel you to keep running.  Running is so much more fulfilling than this steady pace jog.

Just a side funny note that I want to make sure I don't forget.  My mom's main cardiologist we lovingly have referred to as Dr. "Carefree."  Nothing ever seemed like a big deal, until he was all frazzeled before she tanked.  He was also pretty socially stone cold as well.  Whatever, if you are smart and can take good care of my mom I don't really care how awkward you are.  Well once my mom learned a little bit of what happened to her, she reached for his hands and genuinely thanked him for saving her life the next time she saw him.  He squirmed with the physical contact and I about died laughing on the inside and then on the outside when he walked out and she let me in on the fact that she just liked messing with him.  Well wouldn't you know, he reached for her hands the next day he saw her.

My mom is constantly waffling between the up and down.  And I do my best to not try to cheer her up and fix it.  She is entitled to her bad days, and her tears.  And really, I can't fix it.  I can just be there and cry with her when she needs someone else to sit in the shit with her.

So today I will bring her the back scratcher I bought so that she can relinquish the butter knife she kept from her breakfast yesterday.  I will wash her hair because it is about 20 minutes worth of heaven in her eyes.  I will put lotion on her skinny little Joannie chicken legs that she now rocks.  And I will cry again with her if that is what she needs.

At the risk of being stalked, I would love it if we could overwhelm my mom with cards of love, funny stories, and honest encouragement.  The situation does suck a bit, but it sucks a little less when you know you are not fighting alone.  I will deliver all of them to her.  Promise.

244 N Hamlin Ave.
Park Ridge, IL 60068

Would you keep praying?  Pray for her foot, that the best decision would be made and that we would all have peace about it.  Pray for her spirit and for God to be even more present.  Pray for her itching, as it is driving her insane.  Pray that we would financially know how to manage this and be able to take care of her.  Pray for God's provision, because right now I cannot see a good solution to many of the things we will face.  Pray that all of us would be able to take care of ourselves while we care for her.  Pray for fuel and energy, as we all hit our different walls.  God is big enough, so I will trust in that.