Madison's One-Year Post Transplant Dinner Celebration

ONE YEAR..  WOW..  INCREDIBLE..  AMAZED..  NERVOUS..  BLESSED..  HUMBLED..  SHOCKED..  POWERFUL..  SPEECHLESS..  TEARS..  HAPPY..  SCARED..  OVERJOYED..  LONGING..  LIVING..  SORROW..  HOPEFUL..  BABY..  BLUR..  HEART..  EXCITEMENT..  TERRIFIED..  HOPEFUL..  SAD..  CALM..  CONFUSED..  MILESTONES..  PEACEFUL..  FAMILY..  LIFE..  UNKNOWN..  APPRECIATION..  LOVE..  SERVICE..  TESTIMONY..  GRATITUDE..  THANKFUL.. 

These were a few words that Mark and I could think of to describe this past year for us.  As Madison's one-year post transplant anniversary is coming up, we are quickly reminded of the many blessings we received.  We are so grateful for each of you and the love and support that you have shown our family.  Thank you.

So.. you're invited...
Please come and have dinner with Mark and I as we celebrate Madison's one-year post heart transplant.  A special invitation is being extended to all heart families and heart kiddos, friends, family, doctors (I know you read this blog..), and transplant coordinators (I know you read this blog as well..).  We would love to see everyone there.  
Dinner will be held at GoodWood BBQ in Orem on December 4 at 6:30pm.  This will be a 'no host' dinner. 

Please RSVP in the comment section below, or send me an e-mail.  I'm excited to see each of you there.     

Magnesium Recall

I'm not sure if this will affect any other heart kiddos, but I wanted to let you know just incase.  This morning I received a phone call from our pharmacy (Rock Canyon Pharmacy in Provo...) informing me that Madison's Magnesium has been recalled.  They have advised us to stop using her current med and to pick up a new one.  I'm not sure how many pharmacies this affected... maybe just mine...
I also contacted our Transplant Coordinator (Michelle Cardon).  She was not aware of the recall, but advised us to have Madison's Magnesium levels checked.  hmm..  I never thought that a recall might happen.. Has this happened to anyone else?

One Year : "Holy Cow"

Hello.  It feels so good to finally be writing in Madison's blog.  I seem to be at a place right now where I need to hear from you.  Madison is doing exceptionally well and I continue to stand completely amazed at her progress.  We are trying to slip back into normal life and actually starting to feel like a normal family.  This is a new feeling... I've never felt like a normal family with all the heart stuff going on. lol  We have lived the past 2 years with many restrictions and now we have none.  That is such a weird feeling.   For the first time since Cooper and Madison were born, all four of us now attend all three meetings of church.  This includes Nursery... yikes!  But she loves it... ugh!  Madison continues to have Early Intervention two times per month.  She has graduated from physical thereapy and is currently receiving speech therapy.  She is a little behind compared to a typical 2 1/2 year old due to her old heart.  I have been reassurred over and over again that she is catching up fast and I really don't have anything to worry about.  ( but, how does a heart-mom not worry?  ha ha)
Here's why I need to hear from you... currently our family... ok, maybe just me... have been dwelling in a very surreal environment.  (please tell me this feeling has overcome others)  We are currently sitting in the one-year ago timeframe.  It was one-year ago, October that we were notified that Madison needed to be listed for a Heart Transplant.  And now it is November and November 30 is creeping up on me.  Madison is my miracle baby and she has turned out just fine.  She is absolutely beautiful with a beautiful new heart.  We have been so blessed.  Everything we prayed for and hoped for turned out perfectly, yet I am dealing with the one-year ago emotions.  I just can't believe that we went through a heart transplant.... Holy Cow!  I often want to ask, "are you serious? For real?  ... No Way!"  I think the emotions that I feel today might be because I was so strong during Madison's transplant and now that a year has gone by, I can let me guard down a little, only to find that a flood of emotions appear.  At times it seems so silly to be so emotional.  I remind myself often that Madison is just fine, but then I remember it was a heart transplant... Holy Cow!  We survived and it was so scary, but we did it. 
Below is the beginning of a post that I started to write on October 8... I never finished it  (go figure..)

     Friday, October 8 has come and gone and we didn't receive a phone call from from Dr. Everitt.  We definitely weren't expecting one, BUT then again,  we weren't expecting her phone call last year either.  October 8 marked one year since the phone call that I received from Dr. Everitt where she stated and explained to me in great detail that we needed to list Madison for a Heart Transplant.  It still gives me chills and the tears instantly come as I think about it.  I had never been so terrified in my life.  As I listened to Dr. Everitt, I stood in the hallway of my little home, with tears running down, and starred at Madison as she sat eating breakfast in her highchair.  I remember this day just as it was yesterday and I am still so terrified.  The butterflies of nervousness have never gone away.  Maybe that's just part of being a heart-mom... I don't know.  If nothing else, the terrified feeling is a great reminder of the lessons I have learned throughout this past year.  Two of the lessons include, The importance of life and the meaning of a family.



Cardiology Appointment 27

Madison's journey continues to be successful as she just had cardiology post transplant visit number 27.  (about 41 appointments since birth)  Sometimes I just have to laugh.. that is a lot of appointments!  Holy Cow!  But I am also grateful; there are other heart babies who have had a lot more visits.
Madison's appointment went well.  We were able to meet the new cardiologist.  I can't remember her name.  Has anyone met her yet?  She was nice, but I do miss Dr. Everitt.  I get so attached and don't like change, especially when it comes to doctors. 
Although Maddie's appointment went well, it was during this appointment that I realized... she's officially 2!  If there was a hidden camera in our room, someone was laughing pretty hard at us.  Madison was into everything!  I came prepared for her appointment.. I had a whole bag of toys, books and snacks packed just for her... she didn't want any of it.  Instead she wanted to rearrange all the baby hospital gowns.  Yes, the ones that are sanitized and folded very neatly in the exam table drawers.  Madison is also going through a phase of taking all of her clothes off, including her diaper.  She can undress herself faster than I can blink, so at one point, she was completely naked and rummaging through stuff.  She also wanted all the band aids and binkies.  For an entire hour,  I was guarding the exam table like it was a hot stove, trying to redirect her.  It was exhausting and all could think about was my diet coke sitting in my car.  No laughing.. we ended up coming home with three binkies and a handful of band aids.  I'm not even going to ask if we were charged for them.   
To give Madison some (small) credit.. we did have a 45 minute wait to see the doctor.  And her cardiology appointments are usually about 3 hours long. 
In addition to a busy two year old and a long appointment, the lab messed up on Madison's lab order.  Few things tick me off more than a lab tech that can't read doctors orders.  It was over an hour wait for the IV team, so I took a deep breath and let the lab tech draw Madison's blood work.  I even pointed to the exact vein that Madison prefers.  Again, she didn't cry.  It went well until they called Madison's name over the intercom at the hospital for us to return back to labs.  Upon returning, I was told that they forgot to get her Prograf and Cellcept levels.  What?  Were they kidding?  Those are the two most important levels for a transplant patient.  I explained to them that I already gave her meds to her and so we would need to redo her labs the next day.  And that is what we did.  Dang it.  I was ticked. 
Her labs have lead to more Prograf drama.  Nothing serious, just transplant drama.  Her Prograf level came back quite low.  I've decided that if drugs are a gender, than Prograf is definitely female.  Anyway since increasing her Prograf, she has broken out in a bumpy rash?  Has anyone seen this before?  It looks like goose-bumps.  They are white little bumps; not red, but it is spreading.  It started on her bum cheeks, thighs, stomach, upper and under arms.  Today her ankles were covered and she has a few bumps on her nose.  It's not very noticeable unless rubbing her skin, or looking for them.  Maybe it's eczema??  I did call the transplant coordinators and they said it sounded like something Prograf would do and they did increase her dosage quite a bit.  Maybe?  I hope she's not allergic to Prograf... I really have no idea.  They asked me to watch it and let them know if it gets worse.  We have a pedatrician appointment on Monday, maybe he'll know what it is..  The good news is that it doesn't seem to bother her. 

Let me know if you have any suggestions..

Green Light...

FINALLY... AN UPDATE! 

I know.. I know.  I'm in trouble with many of you for not updating Maddie's blog.  I apologize. I'm loving the blogging world and getting to know other families, but neglecting mine at the same time.  So here it goes.  It has been awhile, so if you will, please travel back to May/June timeframe with me.

I wanted to go back this far because this is when Madison finally hit a huge milestone...about two weeks before she turned two, Madison started walking!  Yeah!  I was so excited!  It completely amazes me how much Madison's broken heart affected her development.  (especially watching her development along side a twin.)  There is a huge difference.  Prior to transplant, her little body was too tired and weak to meet those much needed milestones.  I've learned that those milestones are important and actually must be met throughout development.  Post transplant, Madison has done amazing and is slowly catching up with her brother.  

Fast forward to June 10.  This was Cooper and Madison's birthday.  I was an emotional mess that day.  (since Madison's transplant, I can become an emotional mess at any moment... it's becoming embarrasing..)  Last year at this time, I had no idea just what our little family was heading for.  I had no idea that we were facing a hurricane...head on, BUT we made it!  

I loved Cooper and Madison's birthday.  Although we had a lot to celebrate, I didn't want to have a traditional birthday party this year.  I just wanted to spend the entire day with my little family.  Mark laughed at me as he would catch me tearing up every now and then.  I loved being a mom on that day.  I tried so hard to soak up every minute. 

Cooper and Madison at the Aquarium on their birthday.  June 10. 

Cupcakes! 

(dang, I didn't realize that I can clean highchairs so well.  Those are shiny!)

We do have blinds on our windows,

however Cooper insists that the blinds be raised each morning.

Madison had hearts on her cupcake. 

I am such a heart nerd.  It's embarrassing.  But I hope my nerdy phase never ends.

I'm still laughing... Cooper's cupcake is cute. 

I asked for monkeys on his cupcake.  I think those are monkeys??

I'm in love with this picture.  Madison is so beautiful. 

Dr. Everitt gave us the green light to travel outside of Utah. 

We quickly ran away to my parents cabin near Jackson Hole.  This picture was taken on their back porch.

  It is so beautiful and peaceful there.

I do remember thinking... I wonder where the nearest Cardiologist is?  That part was a little scary for me.   

My Big Boy.  He is absolutely adorable. 

For the most part, his personality is quiet and gentle.  Although his recent actions are beginning to create some stories.

Cooper knows every body part, including eye lashes and eye brows.

Madison is playing at the splash pad at Thanksgiving Point. 

At age two, she is modeling her 12-18 month swimming suit. 

 (Our heart babies are so small...)

Swimming Lessons! 

Cooper and Madison attended 4 weeks of 1-1 swimming lessons everyday.  I'm exhausted thinking about those 4 weeks, BUT I really feel like it helped with Madison's development.  I highly recommend this to parents.  (Cooper and Madison are the first two babies.. I mean toddlers.. nope babies sounds better.)

Madison is diving (sort of).  Once Madison hits the water, the instructor lets go of her.  Madison knows to roll on her back, put her hands behind her head, and float to the top.  This took awhile to learn, but she can do it now.

Captain Madison.

Fireworks on July 24.

8:00pm meds post transplant.  December 2009.

Can you believe this?  When Madison came home from transplant, she took 13 meds.  I administered (such a big word for a mom) meds every 2 hours from 8:00am-8:00pm. Madison would then have a break until her midnight dosage.  And then the game would start again the next morning. 

Madison's current 8:00pm meds.  July 2010.

Madison no longer takes meds every 2 hours.  In fact, after her 10:00am meds,she doens't have any until 4:00pm.  That big gap of time feels so weird.  I keep thinking that I'm forgetting something.  Madison currently takes 7 meds 6 times per day.  Piece of cake.

Not only has Madison's meds tappered off, but so have her Cardiology appointments.  Post transplant, Madison had Cardiology appointments two times per week.  As of our last appointment on July 8, Madison does not have to return for 6 weeks.  This is the longest timeframe between appointments that Madison has ever gone in her life.  So good...

more to come... 

Update in Progress...

Hi there...

I feel terrible (as I should) for waiting so long to update Maddie's blog.  But wait no more, an update is on its way.  I'm in the middle of a post and plan to finish it tomorrow...

(I just wanted to say hello..  I miss everyone) 

An Honorable Night (and an update)...

Tonight I find myself once again emotional as I'm completely amazed at how well Madison is doing.  I'm grateful and I'm humble.  I fall in love with her and Cooper more and more each day.  There are times, my love for them is so deep that I can taste it.  (I think every mom experiences that..)  I absolutely love being a mom.  They complete me.  And because of them.. because of my journey with Madison.. I'm beginning to understand the purpose of life a little more.  I'm thankful for that.

We finally had a Cardiology appointment today.  Because Madison's biopsy counted as 'seeing the doctor', we have not been to an actual clinic visit for 6 weeks.  Ahhh!  It has felt SO weird!  But.. we went today and now my life seems back to normal.  :)  Madison's appointment went well. 

Good News:  This afternoon I received a phone call from our Transplant Coordinator informing me that...For the first time EVER, Madison's Prograf level was perfect!  Timeout:  Remember how Madison switched from the generic form of Prograf (Tacrolimus) to the real stuff?  That did help and the switch was needed.  But her levels are always a little low.  Therefore, with each blood draw, we have had to continually increase her Prograf.  BUT NOT TODAY!!  This also means that Madison does not need any blood draws until our next appointment in 3 weeks.  Madison has had her blood taken every week since November 30.  That is a lot of pokes for my little girl!  And now she gets to go 3 weeks without any pokes!  HOO-RAH!
_______________________

An Honorable Night:

A couple months ago, I received a phone call from the American Heart Association.  They were wondering if I would be willing to speak at the American Heart Association Heart Ball.  The event was scheduled for Saturday, May 15.  As I said yes, the butterflies of being nervous began to arrive, along with heightened anticipation, combined with adrenalin.  Needless to say, I was very nervous.  

The sole purpose of the event was to raise money for the American Heart Association.  And with my permission, they incorporated Madison in every part of the evening in hopes that her heart story would entice people to donate.  They showed a video and then I spoke for about 10 minutes.  I simply told Madison's heart story and then introduced her (over the podium) to 350 people.  

Little did I know that it would be such an honorable night.  After I spoke, all 350 people wanted to see her.  Because they knew she was a transplant baby, they were polite in keeping their distance and not touching her too much.  As people walked past us, I could hear them say, "there's the miracle baby."  I loved that evening.  And it was fun. 

One of the attendees to the event was Elder Russell M. Nelson.  He was honored that night for his development of the Heart / Lung Machine ( or Bypass Machine).  A patient is put on the Heart / Lung Machine when undergoing extensive surgery (i.e. open heart surgery, transplants).  We were able to speak with him for a few minutes.  Speaking with him was the highlight of the night for me.  Spiritually and intellectually, he completely understood everything that Madison has been through.  It was such a privilege to speak with him.

Below are some pictures from the event.  We were so involved with everyone that evening that we forgot to take pictures.  And I was nervous.. a camera was the last thing on my mind.  :)  I'll post more pictures as I snag them from relatives who were also at the event.

Enjoy. 

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