Miss Madison

MAKE A WISH

2011-04-16T08:22:00.000-07:00

A couple months ago, I received a phone call from Primary Children's. As any heart mom would tell you, we usually don't love these phone calls. As I just starred at their name on my caller ID, I froze and started to panic. I wasn't expecting any phone call and instantly wondered if everything was ok. ... Nonetheless, this was a fun phone call! I was being notified that Madison had been chosen to receive a wish from MAKE A WISH. The purpose of their phone call was to get my permission for Madison to receive any wish of her choice. And of course, I said, "YES!"

Following my phone call from Primary Children's, I received a phone call from Make A Wish. It was our first Wish Granter's (Paul and Sarah), calling to introduce themselves and schedule a time to come meet Maddie and Cooper. I remember this phone call because I couldn't talk. I was just having one of those mommy moments where I found myself overcome with emotion and so grateful for this opportunity. (those moments seem to happen so frequently...) Paul and Sarah came to our home and spent an evening playing with Maddie and Cooper. We had a great time! The purpose of their visit was to try and figure out what Maddie might wish for...

A few weeks went by, Paul and Sarah moved away and we met our second Wish Granter (Coral). Coral invited us to come to the Wishing Place in Salt Lake. At the Wishing Place, Maddie would be able to go to the Wishing Room and make her wish. A key to the Wishing Room was mailed to Madison.

Madison holding her key.
(only those with keys can enter the Wishing Room)

The entire Wishing Place was decorated just for her.

After much discussion and excitement, Madison made her wish. We helped her write it on a piece of paper and then sealed it tight in a capsule. Everyone then followed Madison into the Wishing Room.

Wishing Room

The wishing room was magical and sparkled with many colors. There was beautiful music playing inside. It's hard to see in the picture, but that's a water fall behind the cylinder. While in the wishing room, we all took the time to read our wishes to Madison. At this point everyone was pretty emotional. This wasn't the time to wish for fun stuff; it was a time to reflect on what Madison has been through and what we wished for her future to hold.

When it was time, Madison took the top off the cylinder and placed her heavy capsule inside. Then we put the lid back on the cylinder. Her wish was immediately sent to the Wishing Wizard. We waited for only a few seconds for a response from the Wishing Wizard. The room then became really bright, shiny and sparkly. This meant that her wish was granted...

Sometime around June 1, this will be arriving at our house...

So... if you think I'm naughty at Christmas time, then I was naughty here too. I marched myself over to Backyard Adventures to see exactly what this looks like. IT IS HUGE! Mark measured and this new toy will take up our entire backyard. We are so excited, especially Cooper and Maddie.

When I titled Maddie's blog, "They Journey of My Heart Transplant", I never thought I would be blogging about the overwhelming, life - changing experiences that we would have the opportunity to go through. I have witnessed so much good and met so many good people as I've traveled through this journey with Maddie. Often the feelings of gratitude are so overwhelming; it's hard to find the perfect words to explain our perfect journey thus far.

A very special thank you to our medical team and Make A Wish. We appreciate you! We love you, Madison loves you!

_________

Yesterday (Friday, April 15) I was notified that a sweet, sweet 12 year old girl also named Maddy has chosen to sponsor Madison's wish. Maddy is having a bake sale TODAY from 2-4pm at the Lone Peak Park (10140 S. 700 E.) in Sandy. All proceeds will go to Make A Wish for Madison Hiles' wish. Thank you Maddy! We're coming by to meet you...

SURVIVING RSV...

2011-02-07T00:11:00.000-08:00

I know, I know.. I went way too long between blog updates AGAIN.   aah!   I really wish that I would update more often, but life seems to get so busy and blogging is easily put on the back burner.  I have thoroughy missed hearing from everyone as I find it therapeutic to write and exhale those feelings that come with being a heart mom. Your comments always give me the added energy that I seem to need. I absolutely love hearing from everyone.

How about this... I'll start with an update and then promise (to whomever is reading this - or just promise to myself) to write a blog entry everyday this week and then I should be caught up by the end of the week. And at the end of this entry, I'll give you a heads up of what to expect later this week.

So here it goes... my biggest fear (aside from heart failure and transplant) came true. Madison was diagnosed with RSV on Friday, January 28. Is there another word for terrified? Cause I have been absolutely terrified of her getting sick. I think it's because of the unknown.  I had no idea how any sickness would affect her, or what I would do if she got sick. I just wish that I could bubble-wrap her beautiful heart in an effort to keep it safe and then double bubble-wrap Madison. Dang it... sometimes it is so hard and so stressful to be a mom to a heart kiddo!

Little did I know... my mama instincts would kick in and I would know exactly what to do when she got sick. During our visit with her pediatrician on Friday, I was warned that her RSV would probably worsen, especially since she was immune-suppressed. I discussed a plan of action with her pedicatrician and returned home with breathing treatments and an antibiotic for her ear infection. (oh, Cooper also had 2 ear infections, but tested negative for RSV) We returned for a follow up visit on Monday, which Madison actually looked better. I'm still laughing cause she managed to look better only for her appointment. By the time we got home, she wasn't looking so good anymore.

On Tuesday, February 1, Madison was admitted to Primary Children's for RSV and an extremely high Prograf level. Prograf is one of Madison's heart medications. It is an extremely sensitive drug that can easily fluctuate. Dramatic fluctations in Prograf can cause a person to have severe headaches, lethargic, stomach aches and even cause rejection. Upon being admitted, Madison was pale and lethargic. Looking at her reminded me of heart failure again. I found myself being so scared again. She needed some oxygen and fluids.  I wasn't prepared for her needing oxgyen as her sats have always been perfect. (even through heart failure) The entire time that I sat in the ER at Primary's I was shaking. I was so scared and wanted someone to reassure me that her heart was ok. I didn't tell anyone how scared I was, but inside I was begging for someone to tell me that her heart was ok. After her chest x-ray, a resident doctor came in her room just to tell me... "mom, her heart looks just fine.  It's handling the sickness very well. Now we can focus and treat the RSV." I was so relieved... But how did he know that I was so concerned? I never said anything to him about me being scared and nervous. hmmm.. just another answer to a small prayer. (it happens to me all the time..)

Madison was released on Friday and was so excited to see her brother again.  She is still sick and probably will still have RSV for the next couple weeks. She doesn't need oxygen anymore, but we have continued with the breathing treatments twice per day. Because her Prograf level was such a mess, she will have a two blood draws this week. And then once a week until her level comes back to normal.

This is Madison's first sickness since transplant and I can't believe how much does affect her heart..
1. Dehydration: increases heart rate.
2. Low electrolytes: increases heart rate.
3. Breathing Treatments: increases heart rate.
4. Low electrolytes: increase Prograf
5. Any change in electrolytes: affects Prograf
6. Any change in Prograf: affects the heart.
7. Increased Prograf: affects the kidneys.
8. Her heart can become enlarged due to the stress of being sick.
This is enough to make a heart mama go crazy!

"Some people make a list of goals and accomplishments; I seem to have a list of fears. However, once I have conquered a fear.. it feels greater than any goal that I have ever accomplished." Me

More to come...
1. One Year Post Transplant Dinner Celebration.
2. Madison's annual Heart Biopsy. (Cath Lab)
3. Registering for Preschool.
4. A letter.

Madison's One-Year Post Transplant Dinner Celebration

2010-11-21T22:11:00.000-08:00

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

2010-11-08T22:14:00.000-08:00

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"

2010-11-07T23:46:00.000-08:00

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

2010-08-28T21:21:00.000-07:00

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...

2010-07-29T00:43:00.000-07:00

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...

2010-07-25T22:43:00.000-07:00

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)...

2010-05-26T21:47:00.000-07:00

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

2010-04-14T23:50:00.000-07:00

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

2010-04-11T11:50:00.000-07:00

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

2010-04-09T01:00:00.000-07:00

(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...

2010-04-08T01:15:00.000-07:00

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

2010-04-04T11:14:00.000-07:00

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!

2010-03-11T22:45:00.000-08:00

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

2010-02-22T22:04:00.000-08:00

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

2010-02-18T09:00:00.000-08:00

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!

2010-02-14T22:47:00.000-08:00

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..

2010-01-26T23:00:00.000-08:00

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

2010-01-11T21:09:00.000-08:00

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

2010-01-03T18:13:00.000-08:00

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.)

Cardiology Appointment #4

2009-12-29T22:03:00.000-08:00

I decided to number our cardiology appointments. Just for fun, no other reason. (don't laugh too loud) It'll be interesting to see how many appointments Maddie has. I've started counting after transplant simply because it was her transplant that I began blogging. We have a ton of appointments ahead of us, so it will also help readers to follow where we are. :)

In regards to Madison's new heart, her appointment on Monday (December 28) went perfectly. Her heart is beautiful and beats without any error. I am laughing as I write this because her personality has changed so much since transplant. She is still a happy baby; no longer the constant fussiness that we had grown accustomed to. BUT she is beginning to act more and more like a typical 1.5 year old. I love it, but she was a little stinker at her appointment. She screamed through her entire echo, which was only about 15 minutes. I had her purse full of toys and her favorite food, but nothing was working. She even spit out her meds right in front of our transplant coordinator (Emily). She refused to wear her mask, even though I told her how pretty she looked. And then she had a little temper tantrum while trying to get dressed. In case you are wondering... she's feeling just fine! (and I love it..)

As this month is coming to an end, I'm beginning to be an emotional mess. I can't believe what all we've done this month. I should make a checklist just to have fun checking things off. Who would've thought?? I'm also in awe at the number of blessings and miracles we have witnessed. We are so lucky to have great friends and family and to have received the overwhelming support that we did. Again, thank you to everyone.

Speaking of blessings.. on December 24, our family received another blessing. We got a knock on our door at 11:30pm Christmas Eve. I thought I was fast in opening the door, but when I opened the door.. nobody was there. Instead, sitting on our doorstep was an entire ham, the book Christmas Jars (has anybody read it?), and a jar full of money. To whomever you are.. thank you. Mark and I spent the rest of the night in awe. We couldn't talk because our hearts were so full; instead we would look at each other and begin to cry.

We have learned more about people and the pure love of Christ, in the last 25 days than we have ever known. For that, I am thankful and humbled. I will never forget it. It has changed me. It has changed our family..

********************
Of course, without disclosing any confidential information, Michelle (our other transplant coordinator) informed me that there will be some FUN families at our Wednesday appointment. And that I knew them. hmm.. We'll keep a look-out for whomever you are. See you tomorrow morning!

(pictures are coming..)

Doing very well!

2009-12-23T23:01:00.000-08:00

I have a permanent smile on my face. I am so happy and grateful for how things have turned out with Madison. I feel like shouting for joy, laughing, and crying at the same time. I've mentioned this to a few friends, but this experience has been the most spiritual experience for Mark and I. Never before have we felt so close to our Heavenly Father and His direct plan for Madison and our family. Going through this has raised us to a whole new level. We will never take life for granted.

Update on Madison: Maddie is continuing to do amazingly well. Today we had our 3rd cardiology appointment since coming home. Madison has cardiology appointments twice a week (Monday and Thursday) At each appointment, Madison has blood work, an echo, EKG, meet with one of the Transplant Coordinators (Michelle or Emily), and then our appointment with Dr. Everitt. Each appointment has looked better and better. I still love watching her echos. There is such a dramatic difference between her old and new heart. Her new heart is absolutely perfect and beautiful.

Yesterday, I had the opportunity of finishing the letter to our donor family. Mark and I think about our donor family all day, every day. We are overcome by their love and willingness to donate. We love them. As this Christmas time is going to be difficult for them, Mark and I felt that it was important to have them receive our letter before Christmas. By the power of 'e-mail', our donor family should receive their letter tomorrow. Writing the letter was one of the toughest and humbling things I have ever done. I'm grateful for the opportunity I had to write this letter. It's another moment I wish others could experience; the deep feeling of gratitude, saddness, pure happiness, and peace of mind. It took 1/2 box of tissues and a husband checking in to offer some counsel. I hope that I will hear back from this family; the family that allowed us to witness a miracle. Through this Christmas season, will you please keep our donor family in your prayers? I can't imagine enduring what they have been through, especially during the holidays. I am so sorry for them.

I would like to share a line from my letter to our donor family:
"In the same country, with only a couple states seperating us, one family endured a tragedy while another embraced a miracle. From deep within my soul, I thank you for allowing your baby to donate."

Goodnight.

We are Home!

2009-12-19T22:16:00.000-08:00

We have been home for 3 days now. Yeah!. Can you believe it? Another miracle! Madison's chest tube came out and instead of a 24 hour observation, we had a 3 hour observation. Dr. Everitt released us on Wednesday afternoon. It is amazing..

Since we have been home, we have had a few of adjustments. I wish you could be a fly on the wall in our house, especially with the meds. It can be pretty hilarious. Madison came home on 13 meds. You should have seen the look on people's faces when we picked up our order from the pharmacy. (I should have taken a picture of everyone starring at us..) I wanted to share some of the instructions we have to follow when giving Maddie her meds.. (I hope you find this kind of humorous..)
1. Take with Food.
2. Take on empty stomach.
3. Do not take with milk products.
4. Refrigerate.
5. Keep out of light.
6. Avoid contact with other people.
7. Do not refrigerate.
8. Drink plenty of water.
9. Do not eat grapefruit while taking this drug.
10. Chew tablet before swallowing.
11. Swish in mouth for as long as possible before swallowing.
12. Avoid prolonged exposure to sun.
13. Take Monday, Wednesday, Friday only.
14. Take 4x daily.
15. Take 3x daily.
16. Take 2x daily.
17. Take once a day.

I'm happy to report that Madison is doing very well at taking her meds. I found my solution; it was simple. Flavor the meds. Duh! The hospital doesn't flavor meds when you are an inpatient. (Can you only imagine what that order to the pharmacy would entail?) I had questioned her nurse a couple times about flavoring, but never seemed to find a solution. Her meds were absolutely, crawl out of your skin, awful ... but much, much better now.

In regards to everything else, Madison continues to soar. She looks so good.. she glows! I didn't realize how sick she actually looked before. Her decrease in heart funtion was so gradual, which made it difficult to see her little body getting sicker. A once fussy baby is now the happiest person in our home. She is crawling around the house, pulling herself up on things, and simply enjoying life as a toddler. Madison is also eating extremely well. She now eats double what her brother eats. It is cute to see her excited for food rather than me begging her to eat. Dr. Everitt reminded me that some of Maddie's meds could make her really hungry and thirsty ... or she could just feel better. I'm going with the 2nd guess. I love that she feels good and is healthy. I love that she is happier. I love that she has more energy and is interactive. I love that she is more of who she is. I love that I have my baby girl back.

Again, thank you for your prayers, thoughts, and support. We love you.

(I have a couple more hospital entries that I want to post.. stay tuned.)

She Did It!

2009-12-15T22:43:00.000-08:00

I can't help but hold my little girl and whisper to her... you did it! As our time here at Primary Children's is winding down, floods of emotion are upon me. It's definitely a Bitter-Sweet feeling. I can't seem to look at or talk to anyone without crying. Although I'm a mess, I don't think I need therapy (ha ha) .. I'm simply so thankful and humbled by this experience we've had. I can not believe what all we've accomplished this last 2.5 weeks - and none of it was planned. I have witnessed so many miracles and I'm so thankful for each one of them. I truely Stand All Amazed.

While there is much I want to write about ... I'm exhausted and will save them for another entry. :)

Madison has continued to do remarkably well through everything. Her last chest tube should be coming out tomorrow morning. Her medical team would like to observe her for at least 24 hours and then we will be going home. Wow... yes, another miracle will happen tomorrow.

Here is our busy schedule for tomorrow: (just incase anyone is curious what we do all day :) )
5:00am: X-rays
6:00am: Labs
7:00am: Order breakfast
8:00am... Meds begin (Madison takes 10 medications at this time. It will take us 2 hours to eat breakfast and take meds .. and not throw up. While we have had many close calls, Maddie hasn't thrown up her meds in 3 days!!)
8:30am: Doctor's rounds.
10:00am: More Meds arrive (Madison has 3 more medications to take..)
10:00 am: Echo
** Sometime in the morning... chest tube comes out.
12:00pm: More meds arrive
Nap tme? (at least for me.. please?)
Snack
More meds
Play time
Dinner
More meds
Time for bed..

**Seriously, if anyone has any suggestions for taking / giving meds - I'll take them. Maddie is doing really well... right now. But, I'm not sure how long it will last.

Thank you and goodnight.

(Shauntelle... I need to call you. I keep forgetting and now we are going home. I would really like to get together. I will call you tomorrow. Will you please call me, if I forget? (801) 649-9551. Thank you.)

Madison's Biggest Supporter

2009-12-13T23:52:00.000-08:00

It is my turn to stay the night up at the hospital with Madison so I decided that I would write a quick post while she sleeps. I wanted to share a few stories about Cooper, Madison's twin brother. Cooper really has been cute through all of this.

On Thursday December 3 Michelle, Cooper and I took a quick break from the hospital to get pictures in front of Madison's tree at that festival of trees. We wanted to walk through the festival but only had time to get a few pictures and then had to head back to the hospital before the nurses shift change ended. After snapping this family picture Cooper got off my lap and snuck under the chains that were protecting the trees. He did not care about all the shinny ornaments or the bears under the tree but instead picked up the picture of his sister and took it back to show his Mom. He was so proud as he held her picture. Little moments like this show how much he loves his sister.

Cooper and Madison have not spent a day apart since they came home from the hospital so this has turned his world upside down. Cooper has done really well with this so far and thanks to some help from his grandma and aunt he has been well taken care of. Michelle and I look forward to all being home together this week if all goes well.

It is crazy to think that these pictures were taken only 45 minutes before we found out Madison's new heart was coming. The call came as we were driving back to the hospital from the Festival of Trees.

Saturday Cooper was able to see his sister for the first time since her surgery. Madison Lit up like a light bulb when Cooper came in the room, she really adores her brother. Cooper on the other hand was too distracted by all the new and exciting things including the bubbling from Madison's chest tube to pay much attention to his sister. After Cooper had a moment to explore the room he turned his attention to his sister and they spent some time together.

I won't leave you hanging so here is a quick update on Madison. I'll let Michelle give you all the details because she is better at it then me. Madison is continuing to do great. This morning her labs came back and her white blood count is back down. We hate to see the PICC line go but I guess it better that then an infection. Madison continues to eat better and better everyday. We are still on track to be home this week. I can't wait to get back home but am sure we will have many challenges along the way.

It is getting late so I am off to get some sleep before our early morning of x-rays, blood work and echo.

Continuing to do well..

2009-12-13T00:38:00.000-08:00

Hello from our room with a view..

Madison has continued to recover beautifully and is doing well. I am completely amazed at our miraculous journey thus far. Everyday, I witness miracle after miracle after miracle with our little girl. And everyday, I find myself so humbled and thankful for the way things have turned out.

She is my tough little girl. I find myself falling in love with her more and more each day. I always tell her that I'm so sorry for all that she has to go through. Her poor little legs and arms are black and blue from being poked. She is officially scared of anyone who walks in her room. From the beginning of our doctor's appointments, I chose to always be honest with Madison. I tell her either 'owie or no owies.' She completely understands and I feel as though it better prepares her for when the owies do occur.

It has been 8 days since her transplant. I am completely amazed at her fast recovery. Here is a little update:
1. Madison has only one chest tube left. (1 of 4) It is still draining quite a bit, so they plan on leaving it in for the next couple days.

2. She is doing much better in taking her meds. Some of her meds taste absolutely awful! Together with her nurses, we have been getting creative in trying to make this somewhat of a positive experience. There are times when her meds go smoothly and other times when they make her throw up. Today was a throw up day. At one point, I was covered from shoulders to ankles... nothing on her, just mom.

3. Madison WBC (white blood count) doubled yesterday and again today, indicating an infection. The infection was found in her PICC Line. She is now on antibiotics (this makes 17 total meds..). The PICC Line has been removed and the sad times begin. Because Maddie doesn't have a PICC Line, she had to get another IV, and she will have to be poked every morning for labs. (they take a lot of blood, too) She is such a hard poke and bruises so easily. Dang it! The IV team has been great in working with her. I always ask for the IV team! It's simply not worth anyone else trying.

4. Food: Due to heart failure, Madison hasn't ever been a great eater. (unless it has 0 calories... cucumbers, green beans, and pickles are her favorite) Now, her meds are causing her to not eat so well. I'm hoping that once we get home, things will change.

Madison's new heart continues to be perfect in every way. It is absolutely perfect for her. I love starring at it on the monitor as it is so comforting. She has been given a perfect organ. Thank you to our donor family. We love you.

(we might be going home on Thursday. I'm so excited!)

Little update..

2009-12-10T23:07:00.000-08:00

Just wanted to send a quick update. Madison continues to be doing really well. This afternoon, she was moved to the floor (just 6 days after surgery..). The floor has been a little adjustment for both her and I. I miss our 1:1 nurse and knowing that was 100% ok, if I left. Today I was gone for about 20-30 minutes; when I came back, she was crying in her crib and nobody was around. I felt terrible. But as the night has continued, things are slowly getting better.

Madison is taking all of her meds by mouth. (Holy Cow... LOTS OF MEDS..) She now takes 15 medications. Last night and tonight, she threw up after her last one. I plan on talking to the pharmacist tomorrow in regards to the side affects (I just want another print out. I know there are 100's of side affects..) and any suggestions. Meds just might be our biggest challenge when we get home.

I'm exhausted. Maddie and I are off to bed. Good night.

Maddie's old heart..

2009-12-08T18:48:00.000-08:00

Following Maddie's surgery, Dr. AK came to talk with us. It was so good to see him. I have much respect for him; he is such a humble man. I wish everyone could meet him.

The first thing that Dr. AK said was, "I opened up her chest and just starred." "I couldn't believe what her heart was doing." "It wasn't even beating!" Her little heart was simply rocking from back and forth. The blood inside of her heart was sloshing around. He couldn't believe she didn't have any other cardiac issues. The human body is amazing as it automatically molds and adapts to try and correct what isn't working. Dr. AK explained that when an major organ, such as a heart, is in distress, other organs will compensate in order to save it. That is exactly what her little body was doing.

Her old heart was 4x the size it should have been; the same size of a 14 year old's heart. It was about the same size as my fist. (your heart is about the size as your own fist..) There wasn't any room in her tiny body for such a large organ. Her left lung was completely collapsed as her heart was squishing it and all of her organs had been pushed to the side. Because her heart wasn't beating correctly, within a couple days Maddie became lethargic, throwing up, no appetite, pale and sort of a dusk color.

Madison's new heart is the size of a walnut. Dr. AK said that it was the perfect size for such a sweet girl. In looking at the pictures below; looking down at her heart, it should be about the same size as his watch.

(I didn't realize these pictures are hard to see. We are meeting with the pathologist in a couple days. I plan on taking more detailed pics at that time..)

The white lining on the inside of her heart is the diseased part (her Hypertrophic Cardiomyopathy) Also, the lining of her heart was rough. It should have been smooth and clean.

Back to the Operating Room..

2009-12-08T14:00:00.000-08:00

Madison continues to be improving more and more each day. Her doctors and nurses are very impressed with her speedy recovery. They did another echo this morning and her heart looks perfect; everything about her heart is absolutely perfect. I love it.

In regards to the extra space in her chest and the fluid...it's still there. I don't think it's getting worse, but it doesn't seem to be going away either. Madison's cardiologist (Dr. Everitt) and Dr. AK would simply feel better with it drained out. With that decision, we are next in line for the Operating Room. The plan is to put another chest tube in, which will drain the fluid. And then we should be good to go.

Although Maddie is off to the OR again, she did have quite the productive morning..
1. Atrial lines out. (that means I got to hold her. yeah!)
2. External pacemaker turned off. (her heart is beating perfectly on it's own)
3. 1 of 3 (soon to be 4) chest tubes removed.
4. Daily chest x-ray.
5. Daily labs.

My heart is full of gratitude for everyone's concern for our little girl. Thank you. We love you.

(Andrea.. thanks for your e-mails. It's so fun to get mail delivered to her room. Mark and I love it!)

Rough Night (Darn it!)..

2009-12-07T12:07:00.000-08:00

After a peaceful day yesterday, Madison's rough night began around 9:00. Don't get too worried.. her heart is doing just fine - it is beating perfectly and we love it! Her rough night was simply a result of having surgery and dealing symptoms from her old heart. (I'll explain symptoms of her old heart in a sec..)

For anyone who has had any type of surgery before, does gas bubbles make you instantly hurt again? They are horrible! I have had them before and they hurt so bad! Now my heart aches for her little belly. Surgeries just aren't any fun! Maddie's gas bubbles began as a result of her major pain medications wearing off and her organs waking up and working again. (this is normal, just not fun to go through..) She didn't sleep much last night as she tossed and turned and screamed as bubbles developed and passed through. So, what does a mom do for her baby during all of this? Not much.. I can't even hold her yet because her chest tubes and her atrial lines are still in. I just hold her little hands and head and tell her, I'm so sorry.

Other symptoms we are dealing with (from her old heart): It has been explained to Mark and I many, many times from many different docs that her little body was starving on the inside. (Starving meaning lack of oxgyen and lack of nutrients due to her heart not pumping well..) Her organs were protecting the most important organ (her heart) by restricting blood flow to the less important organs and extremities. Yet, while her little body was going through all of this on the inside, she showed very few symptoms on the outside. Heart Failure is extremely deceiving!

Anyway.. because her organs were in such distress, now we are dealing with them reacting and responding because they are actually getting the proper amount of blood flow. It's kind of like wearing a rubber band around your arm for a long time cuting off circulation; releasing that rubber band is a good thing, but everything hurts and reacts to finally being able to work properly. This mess is most likely causing some of her stomach pains as well. (Darn it!) So... to help her organs get a large amount of blood volume (oxygen and nutrients) fast, they have hooked her new heart to an external pacemaker. This will allow them to increase her heart rate, so it will pump that extra - needed volume to her organs.

Issue #?: Another issue that everyone around here is stirring about .. Maddie's old heart was 4x the size it should have been. (stay tuned for the post about her old heart.. I even have pictures..) Because her old heart was so big and her new heart is so small (normal size), there is a large empty space around her new heart. We want her body to recognize empty space; her organs and lungs need to spread out and enjoy life without have to be so squished. We are waiting patiently for that to happen. Meanwhile fluid is building up in that extra space. (Dang it!) This is not good. The heart doesn't pump well in water. If fluid continues to build up, Dr. AK will need to put a tube in to drain the fluid. This procedure is done in the OR. I don't want to worry anyone. There isn't a lot of fluid right now.. just something they are going to watch very closely.

Good news: Maddie does need a Picc Line, but she doesn't have heart issues anymore. This means she can be fully sedated and I'm a happy mom. (yeah for a good, healthy heart)

I'll update again later this afteroon. I'll also post about her old heart (with pictures..)
Again, thank you for your love, prayers, and support.

A Peaceful Day..

2009-12-06T16:00:00.000-08:00

I meant to post this sooner..

Contrary from the moaning, whimpering, and being uncomfortable of yesterday, Madison has been sleeping peacefully all day. She continues to be performing quite the speedy recovery. She has surprised almost every doctor and nurse around. In fact, Maddie decided to sleep on her stomach last night. That's right. She rolled over, tucked her legs under, bum in the air and slept most of the night just like that. Yes, she still has chest tubes in and multiple IV lines. She didn't pull anything out (thank goodness). Her nurse felt that if she was comfortable and nothing was kinked.. then it was ok.

Maddie is eating real food by mouth. She has had yogart, eggs, potatoes, popsicle, juice, and formula. She is eating so good. We are so happy.

Madison's IV medications continue to disappear as she is beginning to take them orally.

Maddie does make it known to everyone that she doesn't like her diaper changed. I think it hurts her poor little chest when you lift her legs up. She cries and soon we are crying together as I change her little bum. I haven't made it through one diaper change without crying. I've just been informed that Madison will also need another Picc Line. Are they for real? I am so sad.. can I hold her through another one? That will happen tomorow.

So.. tomorrow's agenda includes:
1. Picc Line.
2. Echo.
3. Taking out the Right Atrial Line. (that is kind of like an IV that is directly in her heart. It allows her medication to go directly in her heart and it measures the pressures on the right side of heart.)
4. Daily blood work.
5. Daily chest x-ray.

Her chest tubes still need to stay in as they are still draining quite a bit of fluid. This is ok that they are draining so much fluid.. she has a lot of extra space around her new heart (because her old heart was so big). That extra space can collect fluid easily, until her organs and lungs fill in that space.

Thanks again for your concern and continued support. Please continue to pray for Maddie as tomorrow will be a busy day for her. Take Care.

Medications

2009-12-05T21:35:00.000-08:00

Madison is doing very well with her feeds. We are playing it safe (and slow) and only having her eat/drink from a bottle. Tomorrow she can eat real food. It is so fun to see her eat. Mark and I have the biggest smiles. She has never eaten this good. YEAH! I would shout for joy, but other babies are sleeping.

Anyway, I have just been informed that because Madison is eating so well, they are going to begin to switch her IV medications to taking them orally. This transition will begin tomorrow and they will take it slowly. (definitely not all at once..)

Question to all Heart Mom's..
1. What is this going to be like to give Maddie +12 medications a day? Shauntelle, I took notes on what you suggested to me yesterday. Great ideas!!

2. How do you make this somewhat of a positive experience?

3. Are there medications that they like (taste ok) and some that they hate?

4. Any tricks for having them take the meds that taste yucky, or make them feel yucky?

5. I know these meds have horrible side affects. Any suggestions in dealing with those?

I can give Maddie her meds. She usually takes them without any problems. She was on 4 medications prior to transplant. I'm just a little nervous to give her 8 yucky tasting meds. It's definitely a different ball game now.

Thanks for your help. I'll holler as I have more questions.

The Day After Transplant..

2009-12-05T16:17:00.000-08:00

Maddie is continuing to do great! She is an amazing little girl! I am falling in love with her more and more each day. It is so hard for a mom to ask her little girl to endure such a trial. I keep telling her that I'm so sorry. My heart aches for her.

As I write this entry, I'm sitting right next to her bed. I can't get any closer to her, as I'm not able to hold her for about the next 3 days, or until her chest tubes come out. She continues to receive Morphine every two hours, but Miss Maddie is begging for more. She has been constantly moaning and whimperimg all day. Her nurse (who has done such a wonderful job) has assured me, many times, that her pain is being managed; Madison is simply old enough to realize that this isn't fun. I just wish she would go to sleep. I have tried everything; holding her hand, holding her body, talking and singing (no laughing at the singing part), ignoring with hopes that she would fall asleep. (I'm not good at the ignoring part, so I didn't try it often)

Timeout: I think we just figured it out.. Maddie can finally start eating. We just tried apple juice, which she grabbed out of my hand and gulped down. I'm sure she has been thirsty this entire time, especially due to her respirator. That can definitely cause a sore, scratchy throat. We tried 2 oz. of apple juice. We waited a little while to make sure it stayed down. I then offered Maddie a bottle of formula and she happily drank 6 oz. She is now sleeping and I'm a very happy mom.

Today has been a day of 'fine-tuning' and trying to meet Madison's specific needs. We've had a few bumps in the road, but that's to be expected. Madison is currently on 12 medications. As you can see from the picture below, I'm making sure that I get my fix as well.

In regards to her respirator, it came out today around 12:00pm. (yeah!) Plan A is ICU for about 4 days, then to the floor, and maybe home before Christmas. This plan is if everything goes perfect. We may have some setbacks and I should probably prepare myself for that. It really doesn't matter how long we are here... we have a healthy baby girl who now has a perfect heart. It can't get any better than that.

While sitting next to Maddie's bedside, I've had some time to reminisce over yesterday. I look back to the pictures of Maddie just before her surgery and I instantly start to cry. I can still feel those exact feelings of being so scared for her. The thought of a transplant surgery terrified me. It still does and the surgery is over. Yet while she was in surgery I found myself calm and under control. My personal prayers were definitely being answered. I felt comfortable with our surgeon and his abilities. I simply knew she would be ok.

There are also many people who supported us and I personally thank them.

Our Donor Family: How does a mom begin to thank you for giving such a sacred gift to her little girl? Thank you. I love you and I'm so sorry. I've been thinking about this family for a couple months (since Maddie was first listed). I have much admiration for them and admire their strength and courage in allowing their baby to be a donor. What a wonderful gift during this Christmas season; The Gift of Life. Because of their decision, our baby girl was given another chance in life. Thank you. God be with you till we meet. I hope we will meet soon.

Dr. AK: You preformed another miracle. Thank you for recognizing your gift in life and becoming perfect at it. Your abilities amaze me. Thank you for taking such good care of my little girl. I felt so comfortable while she was in surgery knowing that you were operating on her.

Dr. Everitt: Thank you for recognizing a nagging feeling and acting upon it. Because of your nagging feeling, we have our little girl. It was so good to see you after surgery and the enormous smile on your face. You are an amazing doctor and we love having you as our doctor.

Diamond Rental: You have shown an enormous amount of support since the beginning. Thank you for going above and beyond for our family. Madison's tree at The Festival of Trees is beautiful. Mark and I love you and appreciate you.

Our dear friends Larry and Trina: Oh my gosh! Thank you for purchasing Maddie's tree and giving it to us. It is an amazing gift and means so much to Mark and I. The tree symbolizes love, exactly what the heart symbolizes. And was purchased on the day that Maddie received news of her new heart. I love that we will always have this tree. Thank you. Mark and I love you.

Friends and Family: Thank you for coming last night. Thank you for your love and support. Thank you for caring so much for our little family. It meant so much to our little family.

Take Care.

Done and Doing Well

2009-12-04T23:55:00.001-08:00

All news tonight has been great news. We are excited that everything has gone as well as it did. Madison is now back in here room in the PICU and is doing well. We have had an incredible amount of support tonight that has mad a difficult situation so much easier to handle. The last week has been an indescribable emotional roller coaster. I think it will take a little time to unwind and gather our thoughts so that we can share with all of you the details of this wonderful night of miracles.

Thanks again for all of your support, I stopped counting but we had well over 150 emails, comments and text messages showing your support and concern for Miss Madison. We also had over 30 people stop by the hospital. It is all of you that have made it possible for Michelle and I to make it through all of this. We know that the road ahead will be a bumpy one so we now ask for your prayers that Madison will continue to have the strength to overcome the obstacle in front of her, she is a strong and amazing girl.

We also ask for your prayers to be with the wonderful family that had the strength to give Madison this gift of life.

Posted by Madison's Dad

Update #2 Everything is going great

2009-12-04T19:44:00.000-08:00

I don't want to keep everyone hanging so here is a quick update, we will post more details when time allows. Everything has gone as good as it could have. As soon as they allowed blood to flow in the heart it started beating as if it were her own. They have taken her off the heart and lung machine that supports here during the surgery and she is doing great. They are now removing the heart and lung equipment and will then close her up. We could not have asked for it to go any better.

We need to thank all those who are following our story and have given us support and prayers. We have truly seen a miracle tonight.

Posted by Madison's Dad

Update #1

2009-12-04T15:39:00.000-08:00

Just wanted to let everyone know that Maddie just went into surgery. It will be a couple hours before her heart is here. In the meantime, they are simply getting her ready.

I'll keep everyone posted. Thank you for your prayers and for the love you've shown our family. We feel so blessed to have such great support.

WE HAVE A HEART!

2009-12-04T06:23:00.000-08:00

It's true. 9:00 last night, Mark and I received a phone call from Emily (our transplant coordinator). She was calling to inform us that we have a heart. Our cardiology team believes that this will be the perfect heart for Madison.

(I should have updated this blog earlier, but instead I just wanted to hold Maddie all night. I couldn't let go of her).

Through the night, Mark and I have been flooded with every emotion. I don't think there are any words to perfectly describe how we are feeling. We are so grateful, excited, humbled, sad, happy, and very very scared (at least I am..). We know that we are in the best hospital and we have an amazing team with us. Abigail's dad was right...while I wouldn't wish this to happen to any family, I do wish that you could experise some of our experiences. We have had some humbling and amazing experiences. I wish all of you could meet our cardiology team. They are brilliant people who are truely living and doing exactly what they have come to earth to do. I'm beginning to believe that one can be foreordained to be a surgeon or anesthesiologist . Maybe.. who knows. They are brilliant. They have become our family.

Anyway... Maddie should be going into surgery around 3:00pm (ish) today. She will be in surgery for about 6-8 hours. You are welcome to come to the hospital and visit with Mark and I. (we could probably use a little chattin) For serious, please come by! Mark and I would love it. And we need you. We are only asking that family and friends come around 4:00pm ish. Mark and I just want to spend this morning with Madison. (plus we are talking with many doctors and want to be 100% available to them.)

I promise to keep Maddie's blog updated. For now, here are some pictures of us during the last 12 hours. Enjoy.

Festival of Trees

2009-12-01T23:01:00.000-08:00

I was hoping that I could surprise Michelle when we went to the Festival of Trees on Wednesday, but little Madison has been admitted to he hospital so it doesn't look like we will be making it to the festival. Michelle has explained all the details about how we got here and where we are going from here in the post below. We are hoping that this stay in the hospital doesn't last too long; our goal is to be out in a week. It will be nice to get back home but I am not looking forward to some of the changes we will need to make.

Michelle talked in an earlier post about the overwhelming support that has been shown to us since we found out that Madison would be listed for a heart transplant. I cannot describe how blessed we are to have such great friends and family that are willing to do anything they can to help us out through this trial. We have even had complete strangers reach out to us, Not to mention all the help that Diamond Rental has done for us. We have had other heart families describe this as the worst and greatest experience they have gone through. Michelle and I have begun to truly see how this trial can also be such a blessing.

One of the most recent expressions of love and support came this week from my co-workers who decided to decorate a tree in Madison's name for the Festival of Trees. Like I said earlier I thought it would be great for Michelle to see the tree on Wednesday as we walked though the festival but those plans have changed so I am now using this post to surprise her. The tree is as girly as our little Madison is and I think they did a great job. Please check it out if you can but if you can't make it here are a few pictures.

Thanks to all of those who spent their time and money to create such a beautiful tree.

Posted by Mark (Madison's Dad)

We've had better days..

2009-12-01T09:43:00.000-08:00

Hello to everyone from Primary Children's Hospital..

I've been trying to write this entry for a while now. I tell ya.. just being in the hospital is a full time job for moms (and dads). The doctors and nurses have kept me pretty busy. To be honest, I prefer that. Those who know me, know that I like to be incharge (no laughing..) It's nice to feel like I'm running the show over here.

(Maddie is sleeping right now, so I'm going to type fast)

Here's a little update as to why and how we ended up here. (and now that we're here, how we get out of here..) It really started with her routine cardiologist appointment on November 12. Just as any other visit, Maddie had an echo. Dr. Everitt informed us that her echo had worsened and her Tricuspid Valve was leaking more than her previous echo had shown. Dr. Everitt then continued her exam, took a deep breath, and said to come back in two weeks. At this point, there really isn't anything more they can do for Madison, unless she is admitted. This visit, she is was definitely sitting on the borderline of whether or not to admit her.

Although Madison continues to look so good (on the outside), I knew that what was happening inside her little body was going to catch up to her soon. Her heart is working so hard. Her echos are scary to watch. You don't have to be a cardiologist to see that her heart is heading for trouble. Madison still had not gained any weight (she has been 17lbs. since June.)

On Friday Madison randomly threw up. Naturally, one would think she was starting to get sick. But she wasn't showing any other sick symptoms. Mark and I both had a feeling that this wasn't a sick symptom, it was the next stage of heart failure symptoms. We've had this feeling since November 12. In a way, we knew it was coming. On Saturday, Madison threw up again; on two seperate occasions. At this point, Madison still is not showing any signs of being sick (cold or flu). By Sunday, Madison was beginning to look pale. Her activity level was still normal and following the throwing up moments, she was fine. There wasn't any reason to rush her to the ER or InstaCare. I knew she was ok, but something was definitely going on.

Monday morning we had a routine cardiologist appointment. (if she didn't have one scheduled, I would have called) We went and had labs first. Her *BNP level is still +4,000. Upon exam by Dr. Everitt, she noticed that Madison's liver was enlarged. This is a clear sign that her heart isn't pumping enough oxygen or nutrients to her organs. She immediately sent us for an unplanned / unscheduled echo. Her heart has worsened significatly AGAIN. Following the echo, we were escorted directly up to the PICU where a bed and team of doctors were waiting for us.

And here we are.. in our little suite. They have started Madison on Milrinone. Milrinone is a heart medication that can only be administered through IV. Doctors have described this drug as being an energy drink for her heart. This drug allows Madison's heart to relax, but pump stronger or smoother, and more efficiently. This will allow her heart some 'breathing time', so it can get stronger. That's where the energy drink comes in... her heart is getting a little boost.

Today's events included waiting and then finally getting a Picc Line. For those of you not familiar... 'waiting' is a typical hospital game played between patients, parents, and medical staff. I have become very good at waiting patiently. :)

Anyway... Madison was first scheduled to receive her Picc Line yesterday. The IV Team was busy and requested that she get one first thing in the morning. 8:00am was the plan until that was pushed back to 12:00pm and that was pushed to 1:30pm. I felt so bad for her; she had gone 12 hours without food or drink. She was receiving fluids through her IV, but she was very restless this morning.

Speaking of food and drink... Madison has tried to eat, but still isn't keeping much food down. She is throwing up 1-2 times per day.

Good news... Madison will be coming home with a Picc Line. This will hopefully minimize or eliminate hospital visits. The magical heart drug, Milrinone can be administered through her Picc Line. I'm not sure if this will be a permanent med, or given as needed per Dr. Everitt's instruction.

Upon discharge, Miss Madison is also coming home with an NG-Tube. This is a feeding tube inserted through her nose. She also has a new med... Lovenox. (Every heart mom's worst nightmare) Lovenox is a blood thinner and can only be administered through a shot in her thigh or bum. Is now a good time to remind the world that I have a degree in Social Work, not Nursing?!

K - Heart mom's (or whomever)... I could use some advice. Are there any Home Health Companies that anyone especially likes working with? Anything else I should know about?

Feelings of Gratitude on Thanksgiving

2009-11-26T22:58:00.000-08:00

It has now been a little over a month since Madison was listed for a Heart Transplant. It has been quite a humbling experience. I've never felt so 'blind-folded' in my life. I literally have no idea what is ahead. Yes, we have been educated on Heart Transplants, but every individual is different. And every situation is different. Although our medical team has a specific direction or path that they are following; quite often patients are off the path as they try and meet the specific needs of each patient. I never thought or imagined we would be going through something like this. It's a very surreal feeling. Our prayers are definitely more meaningful than ever.

Another humbling experience is the amount of support we are receiving. It is unbelievable! There are so many good, good people out there. From the moment we found out that Madison would need a transplant, so many have wanted to help. Thank you. Because of your help, we are in the process of setting up a Trust Fund for Madison. This fund will be used specifically for her medical expenses.

A special thanks to Diamond Rental and the employees of Diamond Rental. Each employee has gone above and beyond for our little girl. Again, thank you. It's people like you and a business that truely cares.. that make situations such as ours, a little easier.

we can do this...

October 15, 2009.. Meeting the Transplant Team

2009-11-18T22:07:00.000-08:00

(Only a couple more entries and then this blog will be up to date..yeah!)

I still find myself stunned and in shock that our family is going through this. For real? I couldn't believe that I was about to meet with the Heart Transplant team at Primary Children' s Hospital. Was I really there for my own daughter?

Mark and I prepared ourselves both spiritually and mentally. We knew we needed to be strong and make it through this appointment. This was 'The Talk' and we were first reminded by Dr. Everitt that a discussion or appointment such as this one only occurs when there are no other options available. We had no idea just how educated on Heart Transplants we would become. We had our list of questions with us, but we didn't have to ask any of them. They were all addressed and in a lot more detail than I imagined.

Our appointment began at about 11:00am and continued for the entire day. Yes, the entire day. Mark and I walked out of the clinic room at 6:00pm. The clinic was closed. We had just spent all day in the Cardiology Clinic. Our appointments consisted of first meeting with the Financial / Insurance Rep., Social Worker, Pharmacist, Surgeon, Transplant Coordinators, and finally Dr. Everitt. Each person spent 45 min. to 2 hours with us. We were completely exhausted by the end. Here is what they all had to say.

The Transplant Coordinators (Michelle and Emily) attended our appointment off and on all afternoon. During one of their 'pop-ins', they explained to us the protocol for being on the transplant list, and / or receiving a heart when one becomes available. First, Madison cannot be sick. (no pressure on me..I now demand hand washing.) Aside from the fact that Madison's heart condition could worsen if she gets sick; they simply will not do the procedure if she is sick at all. She can't even have a cold - nothing. It's too risky and they won't do it. Second, we must always be within 2 hours of the hospital. Following Madison's transplant we will need to stay just as close to the hospital for about a year. Needless to say, we're not leaving Utah anytime soon.

Financial / Insurance Rep: Are you ready for this? Our health insurance is one of the many who don't cover transplant surgeries in Utah. Their reason is political and only has to do with dollars. A transplant is one of the most expensive medical procedures. Because of this, our insurance company has hand-picked certain hospitals within the US that are approved and contracted with them. Denver is the closest contracted hospital for us. (remind me to send our insurance company a Christmas card..) I have contacted our insurance company and they informed me the choice of hospital was based on fatality rate and cost per surgery. Denver can do it cheaper than Primary Children's. K-remember the rules above.. we have to live within 2 hours of the hospital and have to remain just as close for up to a year following Madison's surgery. It became obvious very fast that our family would have to re-locate to Denver. OR Madison and I would move to Denver for, who knows how long, and our famiy would be seperated.

Knowing this was Plan A, I tearfully asked if there was a Plan B available. I was so scared that this was our only option. I couldn't imagine how we were going to coordinate this. Were we really being asked to seperate our family? The Financial / Insurance person explained that Plan B would be applying for Medicaid for Madison. We applied. Madison's heart diagnosis qualified as a disability and Medicaid now serves as her secondary insurance. Medicaid has only approved coverage until her surgery. Once Madison receives her new heart, she won't have her disabilty anymore and Medicaid won't cover her. This is 100% ok with me. I am relieved and thankful that our family is able to stay together. Now we are definitely not leaving Utah for any reason!

Pharmacist: Following Madison's transplant, she could be taking 7-12 different medications. Half of these medications consist of steriods, blood thinners, rejection medication, and antibiotics. The other half of the medications are given to treat the side affects from the first half.

Surgeon: After an exhausting day, we had the opportunity to meet Dr. AK. I would meet with him again and again and again. He is brilliant and confident in the surgery he performs. He made Mark and I feel so much better. The feeling I felt while meeting with him, confirmed that Madison will be ok. She's in good hands. Dr. AK described in great detail the process of what happens from one life to another. He explained that in most cases, once the new heart touches warmth, it begins to beat on it's own, without any assistance from modern medicine. Dr. AK said, "God created the heart to beat and it simply knows what to do." As I have read other blogs, he was right. Many hearts simply start beating on their own. It is absolutely amazing. Dr. AK said it's a miracle and he has been given the privilege to witness it numerous times over. As he contined to explain this process of what happens between one life to another, I remember thinking how in-tune all medical staff must be when a transplant takes place. I thank him for his time that day and I'm thankful for the opportunity I had to meet him.

we can do this...

October 8, 2009... The Phone Call

2009-11-15T14:16:00.001-08:00

I look back to this day and I'm still 'taken back' by the phone call. This was a phone call that every parent, every mom, prays to never receive. It was Dr. Everitt; I was excited that she was calling. It never crossed my mind that she might be calling for a reason. I definitely wasn't expecting the news she was about to tell me.

To back up a little bit, Madison had just seen Dr. Everitt the day before (October 7). It was a routine appointment with the typical tests administered (Echo, EKG, blood work). Overall, our appointment went well. There was one small red flag... Madison still wasn't gaining weight. This did worry Dr. Everitt, but we both concluded that things were going well. Madison wasn't showing any other major 'heart failure symptoms'. Dr. Everitt said she didn't need to see Madison until December. I was thrilled... December! Really? This was going to be the longest time between appointments we had ever gone.

The next morning I received 'the phone call' from Dr. Everitt. She explained to me that Madison's 'heart failure symptom' of not gaining weight was nagging at her. She had a feeling that something more might be going on with Madison's heart. So, upon coming to work, Dr. Everitt took some time to study Madison's echos. Instead of comparing each echo from month to month, she decided to only look at her current echo (the one she had on October 7) and compare it to an echo in March. She then explained to me that when looking at the echos with an 8 month gap between them, it was obvious there had been a dramatic decrease in her heart function. Her heart is working too hard and her valves have started to leak. As I cried, Dr. Everitt kept saying, "I'm so sorry to have to tell this to you over the phone." She then informed me that it was time to list Madison for a heart transplant.

Dr. Everitt and I continued talking for about 20 minutes. Actually, I think I just cried and she talked. I remember asking Dr. Everitt if she had the right patient. I know that sounds silly to ask, but Madison looks so good. I understand that she has a heart problem, but is it bad enough for a transplant? The answer is yes. Dr. Everitt reviewed the 'heart failure symptoms' that Madison is currently showing..

1. Slow (very slow) weight gain.
2. Overall development is slower than an infant/toddler her age.
3. Madison experiences moments of sweating. (I think these are moments when her little heart is working too hard, or is tired..)
4. Overall size of her heart is too big and is putting pressure on her lungs. (X-rays will be taken often to ensure there isn't any fluid build up in the lungs or around her heart.)

Dr. Everitt explained to me that her symptoms could get worse and there are other symptoms we should watch for. Her condition will definitely worsen if she gets sick. We then made an appointment to meet with the Heart Transplant team for October 15 at 10:30am.

Following my phone call with Dr. Everitt, my emotions became stronger as I now needed to call Mark to inform him of the news. Mark ended up coming home early from work. We sat on living room floor and played with our kiddos. Emotions ran high as we both found ourselves crying off and on that day. We had just received the worst news ever and have no idea what's ahead. We are so scared, but will do whatever we need to for our little girl. The cute part of the story was that Madison was so happy; she had no idea what had just happened.

October 8 was also our 10-year wedding anniversary. Happy Anniversary, Mark. I love you. (we can do this..)

Madison's Heart History

2009-11-15T10:56:00.000-08:00

I thought I would have an entry just on Madison's heart history. This will kind of explain why we are sitting on a Transplant List. As I think about the events that have happened from the time she was born until now, it gives me goose-bumps. There are so many moments that were answers to our prayers and stepping stones to the next event. I had no idea until looking back.

We live in Provo; Cooper and Madison were born at the University of Utah Hospital. How lucky was I to have delivered my babies at a hospital where all the speciality doctors were located. Litte did I know, I would need them!

Cooper and Madison were born 9 weeks early. This resulted in us living in the NICU for 7 weeks. Living? Yes, we lived there as we spent 10-12 hours each day "coaching" our babies on how to suck, swallow, and breath on their own. Once they accomplished this, they were ready to come home. (this is typical for preemie babies) Mark and I showed up everyday with our whistles and referee outfits on. We wanted our babies home as soon as possible.

While in the NICU, all babies are hooked up to every monitor possible. It is because of the monitors that her first heart episode was noticed. At about 2 weeks old, alarms went off and doctors immediately ran over to our little girl. Madison had gone into SVT (Supraventricular Tachycardia). This was caused by abnormal Cardiac Arrhythmias and resulted in a diagnosis of WPW (Wolfe-Parkinson White Syndrome). Over the next several weeks, Madison managed to have 3 episodes of SVT while in the NICU. Each episode would last about 15-20 minutes and her little heart would beat at 230-250 beats per minute. (average newborn heart beats at 100-160 beats per minute.) I now look back and think.. if Madison was a full term baby, would her abnormal arrhythmias have been noticed? I don't think think so, simply because she wouldn't have been monitored so closely. I then find myself thankful (??) for our NICU experience.

Madison now takes medication (Atenolol) to control her arrhythmias. She is also monitored periodically via a heart monitor and we listen to her heart daily with a stethoscope. To our knowledge, she hasn't had any SVT episodes. It is difficult to notice when an infant experiences SVT as they don't normally show outward symptoms.

Because of Madison's WPW diagnosis, her cardiologist (Dr. Gray) ordered additional tests (EKG, Echo (heart ultrasound), CT scan, and an MRI) to rule out any other diagnoses. It was during these tests that he discovered that her heart muscle was too thick. Madison was then diagnosed with Hypertrophic Cardiomyopathy in addition to Wolfe-Parkinson White Syndrome. Dr. Gray then referred us to Dr. Everitt.

We have now seen Dr. Everitt for about a year. Our appointments with her include routine Echo's, EKG's, heart monitors, blood work, and simply monitoring Madison's condition. Things were going well until October 8, 2009.

Purpose of Blog..

2009-11-13T07:31:00.000-08:00

Dear Friends and Family,

Mark and I have decided to blog Madison's journey of her heart transplant. You are welcome to join us; in fact, please join us! Although there are many families who have gone through this before, I feel like we are treading in an uncharted territory.

Madison has been on the list for about 3 weeks and already we have received so much love and support from everyone. Thank you!

My goal is to update her blog over the weekend and then continue from there.