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. 

/

Heart Biopsy Results: Perfect

I'm pleased to announce that Madison's Biopsy went well. She continues to amaze me everyday! I have a permanent smile on my face and quite often... tears of happiness. It's been quite an emotional day as I've thought about her perfect, perfect journey...


We had the opportunity to visit with Dr. Gray as the anesthesiologist was preparing the Cath Lab for Madison. Dr. Gray was thorough as he went over exactly what the Biopsy would entail and other things he would be looking for. One thing that is looked at are the pressures in her heart. This can (sort of) be compared to an exact, pin-pointed blood pressure. Knowing the pressures within her heart can also determine whether or not rejection is taking place. Just like a typical blood pressure, one wouldn't want the pressures to be too high, or too low.

Once the Cath Lab was ready, I had the opportunity to carry Madison in and be with her until she fell asleep. Thank you to our anesthesiologist for allowing me to do this.

Following her procedure, Dr. Gray was again thorough in explaining the results. Madison's pressures within her heart were high. This could mean that rejection is beginning to take place, OR it's a new heart in a new environment and simply needs more time to relax and settle. So... only knowing this much information, Mark and I continued on with the day. Dr. Gray wouldn't know anymore information until the Biopsy results came back.

As soon as Maddie could drink and felt well enough, we headed to the Cardiology Department for an echo and then to X-Ray for a chest x-ray. This was all routine and part of having a Biopsy or Cath Lab visit. It was a very long day and I was exhausted when we got home.


Last night, we received a phone call from Emily, our transplant coordinator informing us that Madison's Biopsy came back without any rejection! Mark and I were thrilled. Her little heart just needs more time to relax and settle in. So... it's ok that her pressures were high (this time).

This afternoon, I received another phone call from Emily informing us that Madison's labs came back absolutely perfect. Emily then discontinued 3 medications! Madison came home from transplant on 13 medications and now only takes 7. We are very happy and pleased with all results. One of the medications that was discontinued was her steriods. This means that we were given the green light to participate in life again. Yeah! No more lock down! WE ARE FREE!

For those who don't know, Madison does continue to take immunosuppressant medications. Prograf is one of them. She will take these medications for life. She will always be more susceptible to getting sick compared to a typical child. I will always be the paranoid mom who carries sanitizer everywhere I go. However, with this in mind... life goes on and we just be extra careful. And I'm grateful for this.

With all of this good news, Mark and I had to celebrate! We gathered our small family.. this time, Madison included and went to Red Robin for milk shakes. And I proudly walked into the restaurant with my Clorox Wipes, hand sanitizer, and high chair cover in hand.


From here, Madison continues with routine Cardiology appointments every two weeks and labs every week. Her next Biopsy will be in 6 months. After that, she will have a Biopsy every year for life.

Thank you to our friends and family for your prayers and support. Thank you to our donor family. We love you.

Heart Biopsy

I keep forgetting to post that Miss Madison has her FIRST HEART BIOPSY this Tuesday... April 13.  Yes, I'm fulfilling my roll of the typical nervous mom!  I don't like these procedures...I don't think anyone does.  The anticipation and the 'what if's' drive me crazy.  We have requested that Dr. Gray do the procedure.  We absolutely love Dr. Gray.  He is brilliant and one of the best doctor's in the Cardiology Department.

Heart Biopsy Education:
For those who don't know, a Heart Biopsy is completely normal and simply part of her transplant journey.  I think that if everything looks good, she will have a biopsy on a yearly basis.  But I'm not sure, I'll have to ask. 

The main purpose of the procedure is to check for any rejection.  I'm assuming that the doctor's will do an overall check of things as well.  To my knowledge, Madison hasn't had any signs of rejection.  Signs of rejection would include some of the same symptoms of Heart Failure (throwing up, lethargic, sweating, low energy, no appetite).  If rejection was occurring, her heart may sound different as well.  We listen to Madison heart everyday and it sounds the same each time.  One could also be experiencing rejection, but not show outward symptoms and that is one of the reasons why biopsies are done. 

The procedure is done in the Cath Lab.  (Madison has been to the Cath Lab one other time)  She will be put completely under and the doctor's will access her heart through her two main arteries.  This is called a Catherization.  One arterial location is in her neck and the other is upper thigh (groin area).  The procedure usually lasts about an hour and then we get to hang out in Out Patient Recovery for about four hours.

Don't worry.. I have the new jammies purchased.  Madison always gets new jammies, or comfy outfit for any surgical procedure.  And as her biggest supporter, Cooper gets a new pair of jammies as well.      

Cardiology Appointment OR Play Group

(yeah.. the picutres worked.  I'm so excited)
Madison continues to do absolutely AMAZING!  I stand in awe at her recovery every single day.  She is a completely different baby since receiving her new heart, full of energy and busy... very, very busy.  She even says, "busy, busy, busy."  I tell everyone that one of the happiest days was telling Cooper "no-no" to playing in the garbage can, only to find that it was Madison making the mess. 

Below are some pictures of our medical team in action.  I'm missing some medical staff, but I'll grab them for another post.  For the ones listed below, I just want to say thank you!  You always go the extra mile for Madison and I appreciate it.  Thank you for making our transplant journey enjoyable, or as enjoyable as it can be.  Madison absolutely loves coming to her appointments; she loves seeing everyone... unless you're running late and her nap time is interrupted.  Madison loves you.  Because of that.. I love having you as part of our "hospital family".  Thank you.

Just arrived at the hospital

Madison is watching Mickey Mouse and waiting patiently for Shawn.

Yeah, Shawn is working today!  This is Shawn and he is part of the IV Team.  If available, he always does Maddie's labs. 

Madison has never cried when Shawn draws her labs.

My Big Girl.  No tears..

She does look a little worried. 

 I think it's because I was playing photographer and not standing next to her.

Madison then demands that all pagers be handed over. 

It doesn't matter how many toys and books I bring for her,

by the end of her appointment she has demanded everyone's pager.

Next, Madison has her weight taken.  She now weighs 20 lbs. 12 oz.

Then she practices some yoga while having her echo.

This is my favorite picture.  After her echo is snack time. 

Doesn't it look like she is thinking, "Has anyone seen Dr. Everitt?"

This is Emily, Madison's Transplant Coordinator.  Madison loves Emily.  At each appointment, the two of them compare outfits.  They ooh and aah at each other.  This particular appointment, Madison did not approve of Emily's shirt and made her cover it up with her blanket.  I'm still laughing.  It was hillarious! 

Some Thoughts...

Does anyone else become highly emotional every time they post?  I'm beginning to think that blogging has become my therapy.  The minute I begin to write a post, the tears start coming and I cry through the entire post.  Please tell me that this happens to other moms... (if not, just say it does.. then I'll feel better.)

During one of Madison's clinic appointments a couple weeks ago, I was visiting with another heart mom who mentioned that she feels as though she's going through some kind of Post Traumatic Stress.  Now that the war, OR Heart Transplant is over, the stress begins to release and your guard let's down.  And as this happens, the floods of emotion begin to come.  As a mom, one cannot believe what they themselves and their child have just gone through.  Sometimes, I even ask myself... "did we just go through a real heart transplant?" 

Because of the hussle and bussle of Cardiology Appointments, I didn't get a chance to thank this mom for talking with me.  It was so nice to hear that another mom was feeling the same way as me.  (yeah!  I'm not going crazy..it must be normal..)  The words this mom said to me, were the exact words that I needed to hear.  Thank you.

This "Heart Transplant Journey" has been quite the journey.  I definitely have learned more about life, the purpose of life, and the Power of our Heavenly Father in the past year than any lesson has ever taught me.  This has definitely been a life changing experience.  I'm so grateful for the moms and kiddos whom I've met; they have changed my life.  They are Heros in my book. 

Of course, it's not over, but I do feel as though I'm at a Pit Stop.  I have time to stop and breath as things have slowed down a bit.  Thanks to Prograf levels, Madison's appointments are now every two weeks with blood draws every week.  That's not too bad... 

Below are some pictures of Madison at a couple appointments.  Her personality cracks me up.  I swear she thinks we are there for Social Hour, or better yet... Play Group.  Ugh!  I can't get the pictures to work.  I'll post again tomorrow, I promise.

An Easter Miracle for Mason

Happy Easter to everyone.  

My heart is full and it's hard to control the emotions that I feel at this time.  A while ago, I posted  about a little heart kiddo who has become my Heart Hero.  His name is Mason and he is only a couple months older than Madison.  He has already endured quite a tough journey with his heart.  But he is a tough kid and today Mason is receiving a NEW HEART.  An Easter miracle is taking place for him and his family.  

Please keep Mason and his family in your prayers as he will be in surgery all day today.  This is so hard for a family to go through.  Mason's family will be updating his progress throughout the day on his blog.  You are welcome to click on his name (Miracle Mason) and read more about this cute little guy.     

Also, will you please keep the donor family in your thoughts and prayers today.  As a parent, I can't comprehend what a mom goes through as their baby passes away.  But because of this family's choice, a miracle is taking place today.


(I promise to give a Madison update later today..)

Brand Name... All the Way!

Some girls simply prefer...

GUESS
NIKE
Armani
GAP
Baby GAP
Calvin Klein
Nordstrom's
Gucci
J. Crew
Banana Republic
DKNY
Lucky
Prada
Ralph Lauren

... PROGRAF ! (the real stuff..)

Dear Insurance Company,
I know Prograf is expensive, BUT please continue to cover it.  
I'll send cookies. 
Sincerely, a desperate Heart Mom.

I wanted to wait and have Madison's Prograf levels checked a couple times before updating her blog.  With that in mind... her levels look good so far.  We are all relieved.  We have sent letters to our insurance company, updated the pharmacy, and officially changed to Prograf.  After all of this effort and the price of Prograf, one would think the bottle would be gold, OR at least have a big, gold bow on top.  But it doesn't. 

Good news:  (so much good news...)
1. Because Madison's Prograf level is stable, we are now at once a week appointments. 
2. Last week was the first week, since November 30 that Madison only had one blood draw.  My poor little girl has been poked at least twice a week since November 30.  AND she still never cries during a poke!  She watches intently and just as she's about to get poked, we simply say, "owie" together and then she is fine. 
3. Madison's medications are slowly decreasing (this is so exciting to watch..)  She now takes only 10 medications throughout the day. 

We are so proud of our little girl.  I can't believe what she's been through and she's just fine.  It's a miracle and gives me goose bumps every time I look at her.  She is doing so well.  She's beautiful and absolutely perfect with an absolutely perfect heart. 

Prograf Drama

Since my last post, Madison has had 2 more cardiology appointments. Dr. Everitt continues to deliver perfect news each time. And I continue to leave each appointment with the hugest smile on my face! Our only small, very small hiccup is Prograf!

For those who don't know... Prograf is an immunosuppressant medication. By suppressing Madison's immune system then her body is less likely to reject her new heart. It is because of medications such as Prograf that can allow Madison to get sick easily (because her immune system is weakened) and that is one reason why we stay home ALL THE TIME..

Thanks to Prograf, we still have appointments twice a week. We have never been able to get her levels to the correct level that they need to be.

Wait, Timeout, Back-up... One mistake that her medical team and I have discovered is that Madison has been taking the generic form of Prograf. It's called Tacrolimus. Mark and I don't remember anyone telling us, or reading any material that said not to take the generic form. We had no idea! ggrrr! (Please tell me that this has happened to somene else..) I remember our pharmacist asking if we would like generic or brand name. I wasn't thinking insurance or cost or anything. I simply said, 'generic please' cause that's what I always say. I didn't even think of asking Emily or Dr. Everitt. Apparently the generic form doesn't absorb well. There are a couple other meds that Madison takes in a generic form and those are fine. It's just the darn Prograf!

So, beginning tomorrow... we are switching to the real Prograf. This is going to be a little tricky as Madison is on a high dosage of Tacrolimus and probably doesn't need that much of the real stuff. She will probably have blood draws every couple days unil we get her level where we need it. Dang it!

In regards to Madison's mood change that I had mentioned in the previous post... she's teething! Note to self: No need to chase daughter around the house with a stethoscope when teething.. it only make matters worse. Lesson learned.

Again, thank you to all of our friends and family for your prayers and support. We love you.

Valentine Pictures

This is Mark, Madison's dad. Michelle wanted me to post her valentine card. We were originally going to have family pictures taken the first week in December for our Christmas cards, but that didn't work out as planned. So, here is the Valentine card as well as a few other pictures.

Happy Valentine's Day!

I did it again.. I accidently went too long between postings. I apologize, especially to Madison And promise to do better! (and now I have way too much to say..)

Happy Valentine's Day to everyone!

Isn't this so fun!? There are hearts everywhere! I love it! I love that the entire world is celebrating this holiday with the symbol of a heart. I can't help, but think that we as heart moms and heart families might feel this holiday at a deeper level. Today has actually been a little emotional for me. I keep telling myself.. this is silly, it's only Valentine's Day. But, I will never take the meaning of a heart for granted.

** I wanted to post our Valentine Card that we sent out, but I seem to be having trouble. (ggrr!) I'll recruit some help and add it tomorrow. (gee whiz!) If I have your address, yours is coming in the mail.

Today was also fun as we delivered Valentine cookies and chocolates to our friends. Valentine's Day has definitely become my new favorite holiday!


Here is a little update on Maddie: Madison has continued to do absolutely amazing! At her last appointment (appointment #12), Dr. Everitt kept watching her. As she was watching her, I could tell that she was thinking about something. After a few seconds, Dr. Everitt started laughing and said, "I don't mean to stare. It's just that Madison is doing so well and everything has turned out so perfect. It reminds me of why I do what I do everyday." She was right. Everything has turned out so perfect with Madison. We are so blessed and so happy! She has also continued to gain weight. Maddie now weighs 19lbs. 3 oz. and Dr. Everitt DC'd one med. We are down to 12 meds per day.
(I'm sure our pharamacist will be bummed that his work load is decreasing.. )

So here are some things that we are struggling with.. (and I'm trying not to worry). About three days after this appontment, Madison's mood has changed. She has become whiny and extremely needy. She wants to be held all of the time, but doesn't seem comfortable when I am holding her. She doesn't have any symptoms that she might be getting sick. This behavior isn't like her at all. It does worry me because this can be a 'heart failure' symptom, BUT she has a perfect heart. So, I should be able to check heart failure off my list and move on. But I can't. Mark and I go through our 'possible rejection' checklist numberous times each day. It's driving me crazy! This past week, I have spent all day with a stethoscope around my neck.

A couple days ago, I did call Emily (our transplant coordinator) and explained Madison's symptoms to her. Emily was a little concerned. She gave me a couple other symptoms to watch for and asked that I keep in touch with her. I hope that this is just a phase that Maddie is going through. Heck, maybe she is teething?? Something so simple that doesn't cross the mind of a heart mom.. instead we chase our babies around with stethoscopes. Our poor kiddos.

To make things worse, today is Sunday and Emily called me. What? Who gets a random phone call from their doctor on a Sunday? I don't think Primary Children's should be making phone calls on Sunday's... (isn't that a rule somewhere..) It only worries the parents! Anyway... Emily was calling because Dr. Everitt would like to see Madison on Tuesday morning. (Because of the holiday tomorrow, Madison was going to go 10 days between appointments.) I think because of my phone call to Emily then Dr. Everitt wants to see her sooner. Also, Madison's Prograf level is still not at the correct level. We have increased it at every appointment. Anyone else have Prograf level issues? Should I be concerned?

Take Care. I will post pictures tomorrow.

Cardiology Appointments 9 and 10..

Just wanted to give a quick little update. Madison continues to do absolutely fabulous! (I keep my fingers and toes crossed at all times..) My heart is definitely full with gratitude. As of appointment #9, we have graduated to once a week appointments. Madison's medications are still the same, little fluctuations have occurred, but still 13 meds a day.

Appointment #9 was a lot of fun! Hillary, it was so nice to bump into you. I'm so glad that Daxton and Madison shared their appointment. It was funny to hear the reaction from the techs and Dr. Everitt when they heard we were sitting in the same exam room. We should plan more "play dates" like that one. Anyone else want to join?

I was wondering if any of the heart moms would like to meet for lunch? I love the support that we provide for each other and it would be nice to relax and chat. Because our kiddos are sensitive to germs and such, maybe we could meet on a Saturday when the dads might be available to babysit for a little bit. Let me know.

On a more serious note.. through blogging, we have had the opportunity to meet some amazing, strong families. There is one particular family that could use your help. Would each of you please keep Mason and his family in your thoughts and prayers? He is only a couple months older than Madison. He is a heart kiddo who has become my Heart Hero. He is such a tough little guy. His family is in the midst of having to make some tough decisions and could use some "behind the scenes" help. You are welcome to click on his name (Miracle Mason) and read more about this cute little boy. We love you Mason and your mamma is amazing!

Cardiology Appointments 6, 7, AND 8

Finally an update...

Madison continues to do well and puts us in awe everyday. Her accomplishments amaze me! She amazes me!

In regards to her Cardiology appointments, visit #6 didn't go so well. BUT, luckily visit #7 and #8 made up for it. During Madison's visit #6, she lost some weight. Sitting very happily on the scale, Miss Madison weighed in at 17 lbs. 4 oz. Seeing her numbers pop up on the scale, I immediately gasp out loud. The tech said, "what? Is that good, or bad?" I simply picked Maddie up from the scale and asked if we could weigh her again. I was so bummed. I didn't realize just how excited and relieved I had become over her finally reaching 18 lbs. Had she really lost a whole pound in two days? Yes. Not only had she lost a pound, but her blood pressure was high, and Dr. Everitt wasn't loving the sight of fluid around her heart.

The fluid around her heart caught me off guard as well. I assumed the fluid was gone, or at least something that we didn't need to worry about. ggrrr! But, Dr. Everitt explained that she has always had a little bit a fluid lingering around her heart. She was hoping that it would be gone by now, but it's not. She's just going to watch it and treat it as we go. And she would like us to meet with the dietician at our next visit. Dr. Everitt also increased her Enalapril (blood pressure med.) and her lasix (used to eliminate water in the body).

I continued to be an emotional mess for the entire day. I was bummed, worried, and wondering why I was still playing the "Heart Failure Game.." Madison has a brand new, perfect heart. I didn't understand.

Appointments # 7 and #8 helped me to understand that although Madison does have a new heart and it is perfect; she still has a heart condition. Just a different kind of heart condition. She will always see a cardiologist and she will always be on a lot of medication (I knew that), but for other reasons than treatment of heart failure. Dr. Everitt explained that at this time, Maddie is very dependent on her medication. She probably outgrew her Enalapril dosage, which caused her weight loss and blood pressure increase.

So.. once again, I'm happy to announce that at appointment #7, Madison weighed 18 lbs. 3 oz. And at appointment #8, she weighed 18 lbs. 6 oz. We met with the dietician and she is not worried about Madison at all. She did encourage us to continue adding extra fat to her food until she becomes very chunky. And I feel much better. As for the fluid, it's still there. It hasn't changed, so we are just watching it.

Thanks for your thoughts and prayers. We (I) appreciate them so much.

Goodnight.

Cardiology Appointment #5

I am happy to announce to the world that Miss Madison is finally 18 POUNDS! Holy Cow, she made it! Our little girl has been 17 lbs. since JUNE. Now we will always remember.. 18 lbs. at 18 months old. Since receiving her new heart, Maddie is eating great. And has an appetite.. imagine that. She had gained 6 oz. in 2 days resulting in 18 lbs. 1oz. at the time of her appointment.

K- No laughing at the pictures below.. May I remind you that I'm a Social Worker, not a Photographer. (ha ha) I had brought our actual camera, in hopes that Maddie would be 18 lbs. during this visit and I could take picutes of her on the scale, BUT forgot the camera in the car. So, I relied on my trusty camera phone and couldn't seem to get the perfect picture that I was after. But here ya go.. Miss Madison, 18 lbs.

The rest of Maddie's appointment went perfect.

I've had a couple people ask how Madison is doing in taking her medication and she is doing really well. Thanks for asking. She takes them a lot better for Mark than for me. I don't know why. She hasn't thrown up any of her meds (or anything) since coming home. She still takes a lot of medication - 13 to be exact. We switched her meds from Primary Children's to our pharmacist in Provo. I love our pharmacist! I've decided that when you take a lot of meds, you need to love your pharmacist. (ha ha) This was a great choice on our part! They have been so accommodating and they truely care about Maddie. They always ask about her. I love that safe, secure feeling. I felt as though Primary Children's pharmacy was too busy. (I don't know..) I'm laughing right now because we also ordered 200 syringes. Yep, 200. I'll let you know when we order more. :)

6:30am: On our way to Madison's Cardiology appointment. I always try to dress Maddie really cute since she doesn't go anywhere else..

Love, Mommy and Maddie

(Madison's dad forgot to take pictures of her gold shoes. That's ok. We'll remind him next time.)