September 14

Lesson number one. Do not post pictures of your new nephew on Facebook without clarifying that said child does not belong to you.  Whoops.  Can we just say pregnancy brain?  He is cute none the less.  Hello little, pensive Jude.

I, however, am still pregnant, fortunately.  

We have a date.  A very tentative, could change at any time date.  But I will take it and love it regardless.  Friday September 14 is the day my mom is tentatively going to be discharged from the hospital. 

Cue the "Hallelujah" chorus.

I cannot wait to see my mom in a setting other than a hospital room. Like literally, could pee my pants if it could happen tomorrow.  In the same breath, I am petrified as to what it looks like for our family to figure out how to care for her at this stage.  She will need someone in the house around the clock in the beginning.  

Because of the condition of her heart they only want her walking a max of 50 feet.  No extra walks, jaunts, or outings, which is kind of hard to swallow when I think about my mom before the heart attack.  Life is different.  Not bad, not worse, just different.  These are the cards that have been dealt, and I can figure out a good poker face and strategy or I can let myself be eaten by the card shark.  It's my choice.  So I will sing Lady GaGa's poker face at the top of my lungs and choose to focus on the good.  

I will choose to celebrate that my mom will leave the hospital.

I will choose to celebrate that my mom will be able to see the birth of my child, even if she can't come to my shower.

I will choose to celebrate that my babe will have four grandparents, and not three.  

I will choose to celebrate the fact that I am still pregnant and healthy.

I will choose to celebrate my husband who has stood firmly by my side for significantly more than he realized he signed on for.

I will choose to celebrate my family and friends who have rallied around us during this time.

I will choose to celebrate love and life, for we have both. 

There will be more good days and there will be more bad days.  

It was hard to see my mom today.  She feels like crap.  She is super nauseous and because of the nausea, they have decreased her pain medications, so she has a lot of pain too.  So we cried and snuggled a bit.  But overall, I am hopeful.  While she feels like crap, she was able to walk today.  She is making strides.  Her body is tired and it is learning to readjust. Endurance is not built in a day. So instead of being overwhelmed by her bad day, I am going to choose for me to be OK so that I can continue to support her and love her.  

Today for me was a really good day, because we got a date.

Yesterday

Yesterday my mom was supposed to be transferred back to rehab. She was also originally supposed to be transferred back last Wednesday, Thursday, and Friday.  They are promising today.  We have learned to count on nothing.

Yesterday it has been two straight months since my mom was readmitted to the hospital. Two months since I watched her code. Two months since I thought she was ready to walk through heaven's doors. It has been two months where the only setting I have seen my mom in is a hospital bed or chair, and it has been two months since my mom has had any control over what her day looks like or what she would like to do or eat.  She is at the mercy of people caring for her, friends willing to come visit, and suckers willing to get the woman some food that is better than hospital food.

Want to know a weird secret?  Two months ago was easier for me than today is.  It is easier for me to function in a crisis.  It is easier for me to cry when I can justify my tears and tell myself they are appropriate.  It was appropriate to cry when my mom was dying.  It was quite inconvenient to cry as it dawned on me on my way to work Saturday night that rehab is usually two weeks.  That my mom needs two or more weeks to learn to walk again, both from being extremely deconditioned and from the amputation. And you know what is in less than two weeks? My shower. The shower we moved back, because for sure my mom would be out of the hospital by September 8.

Seriously?

I want to scream and cry and pitch a fit.  So I did.  And then I had to pull it together and go work puffy eyes and all.  I also proceeded to ugly cry it up on Sunday with my husband, because apparently I wasn't over it all from Saturday.

I am scared of the road that lies ahead.  I am scared of coordinating finances and rides for outpatient visits.  I am scared she will never get out of the freaking hospital.  I might reach a breaking point and jail bust her out. Please forgive me when I resort to such things.

I am scared my mom won't be approved for a heart and this will be what the end of her life looks like.

Dear God,
If I haven't made it clear yet, I don't want this crap no more.  I want it to go away.  I want my young and vibrant 54 year old mother back.  I want her to grow me vegetables and be able babysit my baby.  I want her to come to my freaking baby shower.  I want her to have 10 toes and to not live in pain.  I want to see her in a setting other than a hospital bed.  I want my mom to live more than 5 years, and I want the last years of her life to be deep and meaningful and rich.  God, I don't want to have to count on people.  I don't want to ask for help, but heaven help us, we can not do this alone. I want to kick and scream and cry like a two year old.  And if she does not go to rehab today, I just might, so get prepared.    Love, Jaci

Not only will my mom have good and bad days, but we all will too.  I'm telling myself it is better to be honest about them, better to let it flow and make friends with the floor I may throw myself on.  Because I think it is only through expressing my gut level honesty at the suck level of this situation that I can continually try to let go and let live.  My normal reaction is to make the situation little.  To tell myself that my mom didn't die, and that she isn't a child living with cancer.  We don't live in extreme poverty.  People all around us have it so much worse.  I should be grateful.  If I make this little it won't hurt so bad.

Screw that.  This hurts and it hurts a lot.  I can rattle off the facts of her medical history like it is nothing.  I can talk about her amputation like it was just the next step needed to get a heart.  And really these things are all true, but rarely do I rattle of my level of fear, sadness, and anger.  So I will try to be more conscious and sit in the suckiness.

Because in the suck (a very technical term), have been such rich and deep moments.  Sometimes it is hard to hold onto those.  Because even when they are good, they can still hurt.  I am sure I am not the only person to physically feel my emotions in my chest.  That burning behind your sternum both when something is so great that you don't want it to end, and also when something breaks you to your core.  Sometimes it is difficult to distinguish the difference.

So please continue to love me and my family.  Please continue to ask me out to coffee.  Please ask me how I am doing if you are up to some tears, and if not, run for the hills, friends, run for the hills.  Because I need to let the tears come and it would be better if I stopped bottling them up until I end up on the floor.  I want to run away, I want to be alone, because it is an old habit and old habits die hard, but really I want to know that we are going to be OK and that people will help us get there.

I guess I have to keep learning that life's battles are not meant to be fought alone, and that I can trust people willing to step up next to me.  I have a thick skull.  Things take a while to set in.

Please pray that my mom can go to rehab today.  I desperately want to see her start to improve and get stronger.  We need some movement in a good direction.  Please pray that she come come to my baby shower.  Please pray that she has better pain control after the amputation.  It will be hard to learn how to walk again if we can't do a bit more for the pain.  Please just continue to cover us in prayer.

I am not alone.

There will be bad days

It just stinks knowing that there will be bad days.  Regardless of how awesome the good days are, there will come many more times where we start to feel defeated and where the tears will flow.

This has been a rough week.  While I want to say I am grateful that my mom's amputation is over, it was a crappy day and didn't go very smoothly.  Luckily she remembers nothing from the actual surgery, but the many hours leading up to it were rough.  Half of her foot was amputated.  I think there was part of me that wanted them to say we had time to wait to save it, but unfortunately, we don't have time on our side.  To move forward with the transplant evaluation, she can have no other outstanding health issues. The risk of infection as we wait for the foot to grow new tissue is just too high.  So we march on, or hop on as she now tries to do.  Hopefully she can start learning to walk again once she can bear weight on her foot on Sunday.

Before the surgery I stole my husband's tactful joke and told my mom she is now officially a "no toe.".  My last name is Noto.  She responded and told me she is only half of a Noto because she is still holding onto those other five toes.  I'm glad we can still laugh in the middle of our crap.

Since the surgery we were told we would move to rehab when there is a bed, but have taken a few steps back, so the soonest we will go is Monday.  First we need to figure out why my mom is so nauseous and why her blood pressures were low again.  We are guessing it is from all the pain medicine, which it makes it tricky to pick your poison.  Please pray for pain relief as we start to move forward with rehab and life.

We are incredibly grateful that the same rehab is taking my mom back as a patient, and it was so hard to hear it get pushed back until Monday.  I want my mom to be close again.  I want more people to be able to visit her.  And I want her to take steps to come home.  I want to see her somewhere other than a hospital bed.

So she will have another right cardiac cath today to be able to measure the pressures in her heart and make sure the meds for her heart failure are on the right track.

Mentally we are hitting the end of our rope this week.  She doesn't want to go back to the cath lab.  I don't blame her.  I think it will be different once she is home and can build up her reserves and those tests are only one day outpatient events where she then gets to return to her own bed.

In the mean time I'm trying to hold onto the humor.  To hold onto the belly rubs.  To hold onto the times I get to snuggle in my mom's bed with her.

This week I'm trying to celebrate our sweet babe to be.  Pregnancy has definitely not been on the forefront of my mind.  I had a great plan to go two weeks past my due date, because at this point, it just seemed better for baby to be in, than out.  Well we had to take that plan off the table this week and I will get to see my Dr. a bit more often than I had hoped.  Good thing I really like him. It has been the biggest blessing to work with the people that will bring your child into this world, and for them to all know what is happening in the rest of your life.  Everything is fine with the babe, just needing to watch a bit closer.

Really it is probably for the best.  It is a good thing for me to focus on.  It is a good thing for me to start coming to grips with the fact that regardless of what is going on with my mom, I will still be bringing a new babe into the world.

Jon and I have always been creeped out by the 4D ultrasound images and videos.  I am totally OK with having no clue as to what my child will look like until I see them for the first time.  At the follow up ultrasound they try to get you a 4D image, because they are nice like that.  I didn't really care if we got one or not.  Ironic that our peanut cooperated so well.

We were so blessed at our shower on Sunday.  As soon as I get the pictures I will post more.  Thank you in advance for all who came and all who loved on our unborn. In times like these we are incredibly grateful to have such supportive family and friends.

Sacred Moments Written 8/18

Last night was a sacred moment.

It was not how I was expecting it, it was not how I planned it.

For those that know me, you know I am a planner.  Her birthday was officially the two mark month since the original heart attack and hospital admission.  So it has officially been two months since I have had to give up my comforting illusion of control.  Granted, I know we all have significantly less control than we like to imagine, that has just become a very real fact for my family in the past two months.  When we finally felt like my mom would actually live, I had a grand plan.  She was going to get better, come home, and if she wanted she could be baptized at our really awesome service in Lake Michigan.  What a great story and testament to hope and faith.  We could all come and sob our faces off and celebrate the life we thought would end too soon.  Too bad I am not the ultimate story writer.

As you know, the story unfolded differently.  Home has not yet been our destination and it may not be.  Truth be told, that story was way more about me than my mom.  I wanted her to live and to walk in that water.  My mom hates sand and being in front of any large group of people. I just wanted to cling to any story of victory.

So last night we celebrated my mom's birthday, and even bigger than that, we celebrated her baptism.  It was not sandy or lofty, but it was sacred.  We crowded in that itty-bitty hospital room.  Her oxygen bubbler set the mood and her IV pump kept beeping.  But regardless of these things, my mom closed her eyes and let the tears fall as she was baptized.  The tears fell as she was reminded of God's great love for her, as she was reminded of the God that will not abandon her or leave her alone.  She was reminded of the promises she has known for a long time, but needed to hear and remember more now than ever.

My mom looked so beautiful, with her now staple headband braid and all.

My mom was only able to make it through my cousin's letter and asked if we could read ours at a different time.  I get it, we were all getting a bit dehydrated.  My favorite part of my cousin's letter was the part thanking my mom for closing her eyes every time she hugs her son, like she wants the moment to last forever.  I wanted to do that last night.  I wanted to hold onto every last tear and every hug with my mom.  I want to cherish these moments that are not a guarantee.  I want to revel in the fact that my illusion of control has been ripped to shreds and truly live like every day matters.  While I might think I am capable of writing a freaking awesome story, I want to rest in the peace that it is not my job. It is my job to live this story to the fullest.  It is my job to cry hard and then laugh hard as the emotions wash over us.  It is my job to celebrate the time we have been given and to grieve the time we lose.  It is my job to love and to live.

So that I shall do.  I shall lift up my shirt and let me sisters feel my baby move, even when I feel silly.  I will go to the baby showers that make me so nervous, and I will let people celebrate me and my unborn babe.  I will cry when people ask me about my mom, because I have decided there is not an inappropriate time to cry any more.  All times are now considered appropriate in my book.  Maybe I should wear a shirt with a warning related to that decision.  FYI this chick will sob her face off.  If you ask a question you better want a real answer.

While I will still fail many times, I will take small steps to live this out of control life with grace, hope, and peace.

We have our "amp" surgery on Monday.  This is the residents cool way of saying amputation. It is a scary and necessary next step.  My mom will lose half of her foot, but should still be able to walk.  Please pray for peace as they have not yet decided what type of anesthesia to use.  She waffles back and forth between the fear of hearing the bone saw and the fear of intubation/extubation.  We have also started the testing process for the heart transplant evaluation.  Please pray for no hiccups and that we do not discover anything else going on that we didn't know about.

Thank you for your love and prayers.  She has the photo albums at her bedside along with the notes that she goes through as she can.  There cannot be a doubt in her mind that she is loved.


***Update: Yesterday was a long, hard day.  The surgery that was scheduled for 1 pm didn't happen until 8 or 9 at night.  Please pray for healing today, and not just for her body.  Will update more after connecting with specialty physicians and knowing next steps in our plan of care.***

Happy Birthday Mom-You are loved.

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 :)

Bartlett, IL

 Milwaukee, WI

 Clinton, WI

 Chicago, IL

 Haiti

 Gurnee, IL

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