100 Days Of Happiness

I recently read an update from a friend on Facebook whose husband passed away a few months back after a battle with cancer.  She isn't even 30 yet, with two small girls, and has to be one of the strongest people I've had the honor of knowing.  A month or so ago she started posted about doing a "challenge" called 100 Days of Happiness.  The purpose of this is to find one thing, just one thing, in your life each day that makes you happy and take a picture of it.  Then take that picture and share it in the amazing world of technology.  I'm going to do this on my blog.

Some days I feel so defeated and tired that I forget how many things throughout the day have made me happy.  I want to start having a more positive outlook on life because it's such a wonderful gift.  And I'm going to start by taking one picture at a time for 100 days!

Hmmm...

This morning did not start out well at our house.  One too many pee spots found in our new house put me over the edge.  Finding out that due to those pee spots we may need to get all of our hardwood floors refinished, yep, further over the edge.  

Then this evening I was reading over posts on Facebook and saw one from a mother of four beautiful girls that I had the pleasure of teaching.  She has breast cancer...again.  Not for the second time, but for the third.  I had her two oldest daughters in first grade a few years before I stopped teaching.  I had her second oldest daughter in my class when she found she had cancer the first time.  She was supposed to come volunteer in my room that day and her daughter came to school and told me, "my mom can't come in today, she has cancer."  I can't imagine how she felt all those years ago and I really can't imagine the anger she felt when she found out this news a few days ago.  

Sure made my anger about some pee spots seem very, very petty.  

Turning Over a New Leaf

Almost 3 weeks ago, we moved into our new home.  I love our new house.  It's amazing to me how simply living in a new place can change my thoughts throughout the day.

I loved our old house too.  It was the first home that Art & I lived in together.  It's the home we brought home both of our girls to after they were born.  So many good memories happened in that house.  Painting the half finished walls with Art, decorating our first child's room, countless celebrations, finishing the basement, watching our girls take their first steps.

But there were also many hard memories.  Sometimes I found myself standing in certain spots of that home and replaying events in my mind.  Getting the phone call that my grandmother had passed, the heartbreak of two miscarriages within those walls, coming home to a living room of loved ones after receiving the news of our unborn baby's heart, the spot that a feeding pump and oxygen tank used to sit.  So many spots in that home that were hard to stand in and remember.

The good memories will always be in my mind no matter where we live.  The hard memories will too, but now I don't have a daily reminder of them.  For whatever reason, I've hardly thought about Mia's heart condition lately.  Partially because she is doing fantastic, but I think it also has to do with a change of scenery.  A "new start" if you will.  I don't know if it's the new, literal, view that I have each day now, or if it's a new view that I've taken on within me, but it feels good.

It feels good to have the unknown be a little more controllable and not so scary.  I am a firm believer that everything in life happens for a reason.  The good and the bad.  Those memories will never be forgotten, no matter where we reside.

Here I Sit

As I type this I am, once again, waiting on hold to speak with an insurance company.  Last week, my week was defined by insurance companies.  Without underestimating, I believe I spent a minimum of 5-6 hours on the phone with an insurance company, the state Medicaid office or the county Medicaid office.  I also went to the Larimer county health office downtown and conversed with several people over email.  Long story short.  Mia's health insurance was terminated.  Not good when all of her HUGE hospital bills are coming through.  Her insurance is through the state, thus we cannot also have Medicaid (it's a policy that her insurance company has in our agreement).  Two years ago, I went through the exact same nightmare.  I thought that it was all fixed, turns out a glitch in the state system still listed Mia as having Medicaid.  So I had to work on getting the Medicaid fully taken out of the state system (ha, not an easy task) and get her insurance reinstated.  Keeping in mind that the insurance I was trying to get reinstated is literally going away the 1st of the new year.  Very easy to understand, right?!?  A week later, yesterday, I finally got the confirmation call that it was all taken care of and her insurance was reinstated without a lapse in coverage.

In addition to all of that, we are having to cancel all of our current insurance policies (all meaning, for all 4 of us) because we are switching to a new plan in January.  I have one more company to call and then, knock on wood, I hope to be done waiting on hold for an insurance company for awhile!

A Successful Fontan

After spending 26 nights in the hospital for Mia's Fontan, we have been home almost 2 weeks.  I feel like I can finally breathe a sigh of relief and say that Mia's Fontan was a success.  We expected our hospital stay to be 7-10 days.  It was triple that.  On Monday I took Mia to Denver for her post-op appointment.  We started out with a chest x-ray, followed by a clinic visit.  I was most nervous about the chest x-ray because if any of the fluid we waited nearly 4 weeks to stop draining had re-accumulated, we would've been readmitted to the hospital.  The x-ray was clear of any fluid build up.  Thank goodness.

Mia is amazing.  The things she had to go through during our stay in the hospital are things that most adults never have to experience.  For the first 2 weeks we were there, I really didn't know if I'd see my baby girl smile again.  I didn't know if I'd see her get out of her bed and not scream at the top of her lungs.  Then one day, I don't know how or why, she smiled, got out of bed, and started walking around again.  It was that sudden of a change.

While Mia's torso may still look like a battle field, you'd never know she had open heart surgery and was in the hospital that long by looking at her.  Her lips and feet are more pink that I have ever seen them and she's happy.  Her oxygen sats are in the low 90's (without any oxygen by nose), which I never thought would be a possibility, let alone reality.

I know that along the path of Mia's hospital stay, my husband and I updated on Facebook.  While many of those updates told the highlights of what was happening, it was far from being the entire story.  I kept daily notes of what went on, not only to ensure that Mia was able to collect her Beads of Courage, but also to remember.

One day I would like to write the story of Mia's Fontan from my perspective.  Right now, I'm not ready.  Right now I just want to enjoy being home with all four of us under one roof.  And I want to continue to be amazed by my daughter every single day.

The Time Has Come

In one week, on September 26th, Art & I will be sitting in the Children's Hospital waiting room.  We will be waiting for the updates on Mia as they open her chest, stop her heart, put her on bypass, work their magic, and restart her heart again.  We will be waiting to hear the outcome of the surgery and to see how she begins her recovery.  There are very few people that can understand what this is like.  It's not like taking your child in to get shots or discovering they have an ear infection and need antibiotics.

Mia will need many "shots" and "antibiotics" while she is admitted.  She will also need chest tubes, a breathing tube, an IV, oxygen, pain meds, the list goes on and on.  I'm terrified.

She has no idea what is going to happen, she's too young to understand.  I can't imagine how scary it will be for her waking up from surgery, not knowing where she is, with all kinds of new tubes attached to her body and in pain.

I look at her standing in our living room and it appears as though absolutely nothing is wrong.  She's doing so great.  It's incomprehensible to think that she HAS to have this surgery to survive later in her life.  Yes, to survive.

Art & I follow a few older girls that have HLHS on Facebook.  They're in their early 20's.  They are our inspiration.  That is what I wish for Mia.  I wish for her to get through this surgery with flying colors and live a long life.  I will be there supporting her the entire way.

With tears in my eyes, this will be my last post before Mia's surgery.  It's simply too hard for me to think and type about it more than I already do.  I want to spend the next week with my family, in our own home, healthy and happy.  Art & I will update when we can while we are in Denver.  If you a person that prays,  please pray for our Mia.  And wish all four of us luck as we, once again, embark on the journey of an open heart surgery.  

Crunch Time

17 days from now, Mia's 3rd open heart surgery should be completed.  I believe I have officially entered panic mode.  This week I will be running around like crazy doing all of my errands for our time in Denver.  Starting on Friday (after Izzy is done with school), we will not be leaving our home until pre-op day.  The thought of being stuck in the house for that long makes me cringe, but I know it's for the best.  This morning before taking Izzy to school, her teacher called me to let me know that they've already had 2 kids out sick.  Fantastic.  That's exactly why we won't be sending her after Friday.  We all got our flu shots last week and I can only pray that we stay healthy.  During my trip to the grocery store this morning, I think I sanitized my hands at least 10 times.  I'm paranoid about Mia getting sick and prolonging her stay in the hospital.  I'm scared for surgery day to be here, but I also just want to put it behind us.  I guess, "this too shall pass."