Our Normal

Hey guys!

All is going well at our house!! Not much to report other than "normal" things!! It's so nice! All I have to tell you about Madi is that she is experiencing life for the first time as a normal toddler, doing normal toddler things, expressing her normal toddler attitude and bouncing off the walls like any normal toddler would!! It's so awesome because I too am begining to experience some of the things a normal parent does and it's glorious! The other day while I was trying to get food out of her cheek that had been in there since dinner she bit me! I had to tell her that's bad and not to do that!!! Which was followed by her crying because I yelled at her :(......then I put her to bed and I cried because I was sad I made her sad!!! I told Austin that there were days I longed to hold her and comfort her and now here I am yelling at her??? How can that be?? ......Austin said that she has to know right and wrong, it's part of being her parent. Guess this is part of being a normal parent!! I mean start an IV on her or give her a shot and I won't shed a tear but scold her after biting her mom and I'll totally break! Lol!! So, around here it's just lots of normal stuff.....if you leave out the PT, OT, speech, meds and still being on complete house arrest!! But hey, it still feels pretty dang good :)!!

Madi will go to the cath lab for her six month biopsy on November 20th already! I can't believe it's been six months, an amazing six months at that. Quite easily the best of our lives thus far :) She also may need a stent (tiny metal cylinder) put in one of her vessels while in the cath lab; her last echo showed some narrowing right where her new heart was sewn to her vessel (basically where they connected the pipes) and sometimes scar tissue forms where the stitches once were. A completely normal process of healing but just healed a little too much for its own good! So, they'll take a look in the cath lab and see how narrow the spot is and if she needs the stent they'll put one in. In the whole scheme of things it's not really a big deal but we'll be prayin it goes as planned if she does in fact need it!!

When things are going so well I almost have to remind myself that she had a heart transplant! I know that seems weird but you really don't think about in your day to day life, it just IS life and that's it, it doesn't define our life. That said, I was recently reminded that although Madi seems so "normal" she is still and will always be more fragile than all the rest of us:

I came across a story through some other heart mom blogs that stopped me dead in my tracks the other day; a four year old girl who had received a heart transplant as a baby had just landed in Florida from Salt Lake City to start a once in a lifetime Make-a-Wish Disney trip. This little girl lived for Mickey Mouse and was completely obsessed with everything Mickey (kinda like somebody else I know) and was so excited to meet him! But, when she arrived her parents took her straight to the hospital because she wasn't feeling good. The doctors in Florida sent her to the cath lab and while there she went into cardiac arrest and suffered extensive brain damage from the arrest. After which her parents took her off of life support and she went home to be with her Father in Heaven. Apparently she was in rejection and nobody knew about it. The rejection had made her heart sick enough that it stopped while in the the cath lab. All her previous biopsy results and appointments had been perfect up until this point. She lived a wonderful four years that was unexpectedly cut short.

It's such a tragic story and hit close to home. I struggled with it for about a week or so because I was instantly reminded that we will always be fighting a never ending battle with rejection and its always a possibility that may pop up. Rejection is a tricky subject; mostly, it is something doctors can spot and can be treated accordingly but in some circumstances it sneaks up on you and nothing can be done except retransplant if possible. I'm not telling you all this to make you sad, I'm just sharing a part of our lives with you. Rejection IS a part of our lives and we will learn to deal with it.....but you know what, we do not have to deal with it alone. We know that our great Lord will be with us throughout this journey no mater what happens! When I think back on all we have been through, I know it's not even physically or emotionally possible to survive it without God, there is just no way! And because we made it through that okay, I know we can make it through whatever might come along. I'm not saying its that easy, it's hard! It took me a week to get that story out of my head and refocus. What I did was number one, call and cry to my mom (and she helped me refocus.....thanks mom:) and second, I turned to this "Give your burdens to the Lord and He will take care of you. He will not permit the godly to slip and fall" Psalms 55:22. And this, "We use God's mighty weapons, not wordly weapons, to knock down the strongholds of human reasoning and to destroy false arguments" 2 Corinthians 10:4. Last, "For this world is not our permanent home; we are looking forward to a home yet to come" Hebrews 13:14. So, although my "human reasoning" gets the best of me from time to time I have to refocus on the truth of Gods word, that's all I can do. I think that's all anyone can do! Like I've said a few times (I have to tell myself all the time, like everyday) don't focus on the future, live for today because not one of us is guaranteed tomorrow regardless of if we've had a heart transplant or not! Nobody knows what will happen in the future but one thing I am certain about is that we should all look forward to meeting our Father in Heaven someday; I mean if Earth is this good (it has its downfalls but overall I love it) Heaven must be amazing!!! What a great thought to know that even our most amazing days on Earth don't even compare to those we will live in Heaven! I'm so excited about that!! But for now I'll just relish in what we've got because its so much easier to enjoy and be glad than fear and be sad :)

Hope you all are doing well and had a fun Halloween! We had a great time, handing out candy. We didn't actually go trick or treating to keep Madi safe from germs but we saw the kids in their costumes from a safe distance :)

It's coming up on a year since we first got admitted to TCH t(November 14th) so I'm attaching "a year in review" to show how far this little M&M has come! A picture is worth a thousand words (I'm far past that with this post, sheesh long winded much!) but you can really see the miracles God performed and continues to perform through these pictures. Enjoy! (Viewer discretion advised by the way).

Halloween 2011:  Madi, not feeling so hot...

Admitted to TCH November 14, 2011......They have Glitter here and I LOVE getting it everywhere!

Christmas 2011 Texas Childrens

Nothin like opening gifts in ICU!

 

January 15, 2012: Madi goes into cardiac arrest in the ICU.  She is put on a temporary device that takes over for her heart; her heart is still functioning it's just too weak and damaged to sustain her by itself any longer. The two red tubes you see are circulating her blood into and out of her body for a few days until she gets her Berlin: a permanent bridge to transplant. 

When on a device like this they keep the blood extremely thin so blood clots don't form; she got a nose bleed that wouldn't stop when they changed her nose tube, thus the huge thing of cotton under her nose!  Luckily, she is suntanning on a beach somewhere watching Mickey Mouse Clubhouse thanks to the gigantic amount of narcotics going into her veins!   

January 18, 2012: Madi recieves her Berlin Heart.  Her sternum is left open for one week to allow
room for swelling while her heart heals from the trauma of surgery.  She will unknowingly suffer a stroke from a clot that was dislodged from her Berlin Heart the following week.   We notice she isnt moving the left side of her body; she is taken to CT scan and a moderate Middle Cerebral Artery stroke is confirmed.

February 14, 2012: Happy Valentines Day!!  Madi has been intubated for approxiamately one month!

Here you go Prince Charming :)

Sitting up for the first time in her high chair as instructed by her doctors;  it will help open her lungs back up! 
 

Sitting up started to get easier after the first day :)

Mommy "holding" Madi as best she can

Most people don't play with puzzles while intubated but..........Madi does!

A picture without her Berlin bandages on; only got taken off to be cleaned then wrapped back up to keep from getting infected. As you can see from this face, it was pretty painful when they cleaned around her cannula sites (one tube connects directly to her aorta and one to her left ventricle). 

After seven weeks of having a machine breath for her, she's doing it all on her own for the first time!  And......she fell asleep with her favorite pink sponges.  I'm pretty sure she cleaned out the hospital's entire supply of pink sponges! We were told, "dont be dissapointed if she isn't successful on her first extubation; its common for kids to be reintubated after being so weak for so long."   Not our girl :)  Did it on the first try and stayed that way!

So Happy to be able to hold her after 56 LONG days!!  Nothing better in the world!

I don't think anybody could make CPAP headgear look so cute!

Stroke rehabilitation begins!  We had the best therapists ever!!

Learning to stand again!

 

Madi your left leg is working!! 

This is my Gramsie, she's been at every surgery I ever had and dropped everything to be with me 24/7 for 8 months at TCH! She and Nana slept with me in the ICU for months!  Not only does everyone around here know me, but they know my grandma's too :) 

March 2012: After two months in the ICU we get to go downstairs where it's more comfortable and Daddy, Mommy, Gramsie, Nana and I can all hang out together at the same time!  No more "only two people" in the room at a time down here!  yay!  Now we just wait till my Angel Heart arrives!

In my recliner watchin 101 Dalmations!  My hosptial favorite :)

April 2012:  Happy Easter!

We truly made the best of our stay on floor 15, room 5, "Madi's Room" as most knew it.   The nurses and staff became our extended family!  Love them :)

NEWS ALERT!!!  Domino's now has gluten free pizza!!  This means lots of pizza dates for daddy and Madi :)

Teaching Madi to wear a mask out in the hallway.  We went for daily "walks" in the stroller around the hallway, sometimes we even walked with our other Berlin Buddy down the hall :)

 

May 2012:  Kodiak makes his TCH debut!!  And.......is loved by all of course!  The doctor who ok'd him visiting was told he was a chihuahua........joke was on him when he walked in to check on Madi that morning!  lol!!  Having Kodiak there for an hour that morning made it feel more like home :)

This is my Nana who put her life on complete hold for 7 months to be with me night and day at TCH!!  My favorite thing to do with my Nana......rock out to Bon Jovi and sing "the ants go marching....."

 Thursday, May 24, 2012:  Five days before Madi's transplant she starts feeling crappy; she gains 1 pound of fluid and is sent to the ICU on Monday, May 28 to be put on a lasix infusion to help get the fluid off.  When her surgeon hears that she is back in the ICU he schedules her for another major open heart surgery on Thursday May, 31.  Her Berlin is no longer doing the job we need it to and an intervetion needed to be made. The next day, Tuesday, May 29, 2012 her Angel heart arrives! 

Madi goes into the OR at aproximately 12:00 pm on Tuesday, May 29, she comes out 12 hours later with a new Angel Heart that is doing better than any expected.  Her lungs where so badly damaged that doctors warned us she may come out on another temporary assist device until the new heart gets used to such a harsh environment.  However, her surgeion tells us that "he has never seen a heart generate such a good blood pressure against such high pulmonary pressures"  i.e. he has never seen a heart do so good against such bad lungs!  This miracle gets better every second doesn't it :)

Miracle Madi, Day 1 with her new perfect heart!

Extubated one short week later!  She is in pain here because one of her lungs has a pocket of air in it caused by a surgical drain tube; this can be quite serious and cause the entire lung to collapse.  The next day, the pneumothorax (as it is technically called) has gotten dramatically smaller. 

Resting her foot on her "Berlin" while sleeping.....except, it's no longer there :)

This is Team Miracle Madi:  Because of this team Madi has never spent one second in a hospital without a family member by her side (not pictured are her aunts and uncles too!)  Never has she opened her eyes and not had a familiar face to smile at or loving arms to hold her tight.  God gave us a great army to fight this war didn't He!  We are an awesome team if I do say so myself, I mean we WON didn't we!!

Food is REALLY good when you're on steroids!

June 21, 2012: After 220 days at TCH we are going HOME!!!  Amen :)

Havne't seen my hound Huck for 7 months! He really missed her!

July 4th, 2012:  Happy 4th of July!!  First Holiday since last halloween we celebrate at home!

 

Dog pile on daddy!

This is how we go "out" to lunch.  Daddy goes inside to get it, we have a picnic in the backseat :)

August 2, 2012:  Happy Birthday Madiosn Rae!  It's been a rough 2 years baby girl, but you made it!! 

Madi's two favorite nurses from TCH come to celebrate with us!  These two girls made our ICU stay the best it could have ever been.  What would we have done without them.  Love them :)

Baring wieght on her left arm!!  Major milestone :)

Painting her left hand with her occupational therapist!  Super fun :)

Out on another lunch date, got my minnie purse and everything!  Watching for daddy to come back with my food!

Mom!  Please stop talking to me while I'm trying to drive!

September  2012:  Madi has done so well that her pulmonologist says "as longs as her oxygen saturations stay above 96% I'm fine with her going off her oxygen"..........Madi says, I'll just be 99% instead of 96 :)

In January she had a stroke and in September she learns to walk all by herself!!

LOVES her some Huck!

And, LOVES her some Kodiak!

Walks in Houston=bug netting to protect from West Nile! 

October 2012:  Happy Halloween!!!

Got this from my Nana and Papa my first Christmas, I just now grew into it!!  Just call me "Malibu Barbie"

Gramsie visits; we don't go anywhere near a hospital!! 

 

Our first ever Family Pics :)

 

 

"[...]This happened so the power of God could be seen in him" John 9:3.  All these pictures show a lot of things, but I hope that what you'll see in them is the power of God!  Your prayers and faithfullness in Him have helped us and will continue to help us through this journey.

 

Hope you all have a great Thanksgiving!!  Keep Madi in your prayers for her trip to cath lab November 20th! 

 

Thanks!

Love, Tabi

What if....

Hey guys,

I seemed to have slipped into some sense of "normalcy" here and forgot to update you! We've had an entire month free of doctor visits and so I guess I was on vacation! Now that we have a clinic appointment on Thursday it reminded me that I seriously needed to update everyone!

It's been so nice to have a month free of needle pokes, echos, EKG's, stethoscopes and doctors but wow has it gone fast! When they told me last month we got a whole month off it seemed like forever but it's already crept up on us! Thursday is a clinic appointment where Madi will have her blood drawn to check her drug levels, an echo to check heart function and a visit with the docs. It's a long morning but not too bad.

It's been almost four months since madi's gift was given to her and she continues to amaze us! She's getting stronger and stronger everyday. She's even walking all on her own! Well, as long as I hold on to the back of her shirt she goes everywhere, once I let go she stops, just needs a little more confidence is all :). In PT we're working on her sitting up from laying down and pulling to stand from sitting so she won't need me to help her with those transitions. She's soooo close to doing both by herself, its much harder when you only have one strong arm to push and pull up onto. But she seems to be conquering the task as usual!! Pretty good for loosing all the function in her left arm and leg only a short time ago! Madi, you are my hero :)

Today I thought I would get out the "toddler potty" bc she's 25 months and maybe could get used to the idea! Well, I got it out, sat her on it and said ok madi, go potty and she did!! Three times that day!! Maybe it was a fluke I don't know, we'll see what tomorrow brings but I was so proud :)!! Just another moment where she has displayed her brilliancy :) ......all parents say this i'm sure!! Lol :). Pee has never been so exciting!

We did experience our first cold ever last week....ugh :(. I thought I would be able to protect her from every little germ on the planet but guess what, that's not possible!! Hey, at least I tried! We got pretty lucky and she never ended up getting a fever, nausea etc. so didn't cause much harm other than a few sleepless nights with a stuffy nose. I still have no idea how she got sick because she never leaves the house, except for a ride in the car now and again. But, guess that's what happens when your immune system is very suppressed, you catch every little thing. Colds and viruses for Madi are nothing to be taken lightly, each time she gets sick she risks her anti rejection medication levels fluctuating, her immune system reving up, and opens the door for rejection or simply a virus her body cannot defend itself against....we'd rather keep that door as tightly locked as possible! But, I know now all I can do is what I have been doing and the rest is up to God to protect her from everything else, just as it always has been!! When I start to drive myself crazy about germs I remind myself of this fact :)

I always get asked how are "you" doing?? So, just to let y'all know, I'm doing just fine :). I have days where I get kinda stir crazy and just wanna take Madi out for an errand or something but in those instances I just remind myself of days that I longed to be in our own house, on our own couch and playing with madi in our own living room, and now that wish has come true! When I think of it that way it's pretty easy to stop wanting more than the blessings I already have. Some days I play the "what if" game in my head; you know, what if this happens and what if that doesnt happen?? Makes me sad, steals my joy and ruins my day! These thoughts as it turns out, are simply the devil trying to creep into my heart and soul where only the Lord is intended! During those "what if" moments I pray for the Holy spirit to come over me and get the darn devil out!! And that usually does the trick:) Or, just remind myself that while I'm worrying about tomorrow, today is passing me by!! God only intends for me to see right in front of my feet so I don't fall, it's not necessary to see the entire path to keep going! So, I keep going, because each day is a blessing that I am so thankful for. I'm thankful for each smile I get to see, each hug I get to feel and each giggle I get to hear :). And I don't think I could survive without Austin who makes me laugh every single day and always treats his girls like princesses. God knew what he was doing when he joined these two (now three,) hearts......What a coincidence these are the words in the song that was sung during our wedding ceremony :)

That's about it for now in the Fleak house, I'll attach a few pictures at the bottom so you can see this little baby who has suddenly become a toddler!! I hope this post finds you all well! We still have a few more months until we're off of house arrest (and probably a few more months past that through the cold and flu season) but can't wait to share this Angel with all of you someday!! For now, take care and enjoy fall. Please keep miss Madi in your prayers for a good appointment tomorrow and continued good health!!

Love, Tabi
P.s. sign up to be an organ donor! Madi's angel heart family, we thank you and think of you everyday!

Two years and counting!!

Hey guys,

Remember when I said no news is good news, well this holds true yet again!! All is well in our little suburbian corner of the world :). We just had a check up for Madi and everything looked great! She had even gained weight finally! She hadn't since we had left the hospital but I just had to use a few tricks the dietitian gave me and sure enough, weight gain! It's so exciting to see her actually gain weight by eating all on her own, she hasn't done that since she was a newborn! It's so awesome! I prayed and prayed that she would gain weight so she didn't have to have a feeding tube again and then all the sudden....she did! God answered my prayers so faithfully and yet then I began to worry that she wasn't gaining weight but just retaining fluid (bad weight). Why is it when God answers our prayers we still question His doings and let evil creep back into our minds!!! Ugh, I hate that! I tried to remind myself of exactly that, she has a new heart now Tab, it makes no sense she would retain fluid! And then today when we went to our checkup I told Madi's cardiologist that I had sorta been freaking out about the weight gain being water weight and he said "that's a thing of the past" ....music to my ears yet again. Worry is the opposite of Faith missy, so STOP that's what I tell myself.... Almost daily. But hey, at least I'm reminding myself right?

We also just got all of Madi's home health therapists set up; she'll have occupational therapy (help with left arm) twice a week, physical therapy (help with her developmental delays due to stroke and all the darn surgeries) twice and week and speeh therapy once a week! So we'll be busy girls! Not that we aren't already but good stuff to keep us focused and on track! I'm excited :). One of the therapists gave me a chart of the things kids should be doing at 2 and I almost cried bc Madi is so far behind (physically but mentally she's totally a two year old!) but then I remembered they don't include the column for 6 open heart surgeries under two years and what that toddler "should" be doing bc it doesn't exist, nothing about that experience is "normal" so she shouldn't be compared to normal, and then I felt better :). If they did have that column there might be two kids in it and she'd be doing everything and more than expected, thanks to Him :)

Anyway, last week we celebrated Madi's second birthday and it was a day I will never forget! A day that I wondered countless times if it would ever come, a day I thought we might celebrate in the hospital, a day I thought I might be grieving the loss of my precious daughter instead of celebrating her life? But here we are, celebrating this day that is full of life and happiness! Wow! What an understatement that is! I can't even describe what it means to wake up and scoop her up in my arms the morning of her birthday and sing "happy birthday" something I hope I never take for granted. Let's just say birthdays in this house will always be a big deal after this journey :). It was truely a joyous day; we had a camera crew here finishing a story they were doing on our little M&M but most importantly we had two of our nurse friends from TCH join the party. I call them nurses but they are more like Madi's miracle workers who we love and cherish and can't thank God enough for! Just another piece of this miraculous puzzle and of course they spoiled her rotten as well!

Last thing I wanted to mention is all the support from our amazing community back home! Growing up I never could have imagined how such a small community could rally around those they care for! My aunt organized a benefit for Madi and ended up getting over $6,000 in donation from our small hometown. I'm completely speechless and don't even feel like thank you is enough! Just know each and every one of you that has so graciously donated to and prayed for our M&M holds a special place in my heart. I will always call this community my home and know it has helped us get through this hard time. Austin and I plan to put all the donation into a college fund for Madi, I'm sure she'll want to be a doctor someday!! Lol, yeah right!

Well, that's the latest!! A photographer from TCH came and took pictures during Madi's Bday but I haven't gotten them yet so I'll post them once I get them! I hope you all are doing well and enjoying the end of summer (I can't wait till its over.....too hot in Texas for this Wyoming girl, but won't miss the snow during the winter!). Love you all and don't forget to sign up to be an organ donor!!

Tabi

Home sweet home!

Hey Guys!

Oh my goodness I can't believe the last time I posted was right after Madi got her new heart, jeez I've really been slacking!! Sorry! Im sure most all of you already knew we were home via FB or word of mouth etc. but yes after 220 days we finally got to bring our baby girl home!! It was a very similar feeling to when we brought her home when she was first born, just so exciting and something we'd been waiting and waiting for! She hadn't even been to our new house yet so it was even that much more special. After all she had overcome, it was just a great feeling to walk through that door with her in my arms :)

That was two weeks ago already and so far so good, or so great, I should say! I cannot believe how much Madi has blossomed, it is truly amazing. I never really knew how much her heart failure had been affecting her until I saw her with a healthy heart. Up until now, Austin and I could hardly squeeze smiles out of her and now she's all smiles all the time! She has gone from taking two to three naps a day to only one and if she's not sleeping she's wanting to go here there and everywhere! The only problem is she hasn't yet figured out how to do that on her own so mom is getting plenty of exercise :)! She slows down from time to time to watch the newest episodes of Mickey Mouse Clubhouse but that's about it, otherwise she's busy trying to figure out how to get movin:). Since we've been home she's started rolling, cruising on the furniture, turning on her bum, saying Mama (not just Dada), scribbling with a pen, working on her sounds etc. etc. she truly has been given a new life. She has progressed more quickly than I have ever seen, isn't that just awesome! She's got a lot of work to do with physical, occupational and speech therapy but now that she's got a strong heart, all of the milestones will be a lot easier. She would probably be crawling already but she's still tryin to figure out what to do with "Leftie". This is her left arm's name bc it kinda does its own thing and doesn't like to participate so we've given Him a name:) It's a he bc he never listens and you have to tell him over and over what to do!! Hehe :) That said, her stroke affected side is doing better and better and getting stronger each day! She'll figure out how to make it all work for her just might not be as easy as it would be otherwise!

We had a clinic appointment a week ago and everything looked good on her echo, heart was functioning very good! On Monday she will go to the cath lab for her second biopsy which is where they actually take a tissue sample of her heart and then send it to the lab to check for rejection. The scale of rejection is 0, 1R, 2R and 3R. A month ago her rejection was 1R which is nothing the doctors worry too much about or even treat in addition to what she already takes twice a day to prevent rejection. If the biopsy is a 2R or 3R she would be admitted to the hospital for IV med treatment to help get her out of the 2 or 3 and back to 1 or 0. This is something we will monitor for the rest of her life, just not as frequently the further out she gets. They'll also be checking her lung pressures as she still has what is called pulmonary hypertension that is a result of her old heart. It's basically scar tissue in her lungs that we have to treat with meds and oxygen and just wait for it to get better over time. If she was an adult we could forget it, they wouldn't get better but bc she's so young and resilient the lungs should heal. I'm really dreading the cath lab on Monday though; we have to be there at 6:30 am which means leaving our house at 5:30, sending Madi to cath about 7:30, she'll be out at prolly 10:30, recovery for about 2 or 3 hours and then just wait till about 5:00 pm for the results! Whew, they are long days! At least we don't have to drive from Rock Springs to Salt Lake and back like we used to! That was even worse! Ugh. It also brings back way too many emotions going to the hospital I hate it! I wish I was stronger and could overcome them but I haven't yet, I'm praying about that one! A lot! I think with time and God's help it'll get better.

Anyways, that's what's goin on lately around here! I hope you all had a great 4th of July and enjoyed time with your family and friends. We enjoyed celebrating our first holiday outside of the hospital since Halloween! We're praying it's a trend for a long time to come :). I wanted to quickly thank all of you for the cards, gifts, thoughtful letters, messages, food etc. that you have sent! If I haven't sent you a thank you card in the mail please forgive me I appreciate each and every thing you all have done and it brightens my day! I have been blessed with amazing family and friends! Please pray for Madi's donor family as she would not be here if it wasnt for their precious gift and for Madi that her cath lab on Monday will go well!!

Love,
Tabi

P.s. sign up to be an organ donor :)!!

The Greatest Gift

"This happened so the power of God could be seen in him". John 9:3

Hi Guys,

I can't believe I'm actually writing this post right now!!! The post I've waiting to write for seven long months to tell you all about Madi's new angel heart!!! Its still so surreal, I can't believe how fast things have gone from "we're gonna be here forever, and there is no end in sight" to "we've gotten a new perfect heart and we'll be going home sooner than we know it!" It's just an amazing, scared, sad and awesome feeling all at the same time if you can imagine. I can't even describe the feeling you get when you find out someone else has chosen to give your child life even though their own child's was so severely cut short; this is the biggest act of selflessness that I can truly think of and for that I feel that thank you is not enough. I don't know anything about our donor family other than they are amazing people who have allowed our little girl a a new lease on life. No longer will she have to struggle to catch her breath every hour of the day, no longer will her stomach constantly feel upset because it wasn't getting enough blood flow, no longer will she feel like she can't stand up and play with her toys because she is too tired, no longer will she feel hot and sweaty all the time because her poor body is always working over time and no longer will she only get ice chips when she is thirsty because her body cant handle extra fluid! Our baby girl will get to experience what life is meant to be not what it has had to be the past 22 months. I hope someday our donor family will come to know just how great this gift is, just how deeply grateful we are and how much this has changed our family's life for the better. I do not know what it feels like to lose a child and I hope I never do, but I do know my baby girl has knocked on death's door one too many times and for that I realize how precious life is
and how huge this gift of life is to us!

I want to thank you all for your outpouring of love, support, prayers and undying faith through all this. I couldn't believe my Facebook page on Tuesday when I told you all the news, it was just awesome to see how many of you have been praying for her!! It brought tears to my eyes every time I logged on just to see how many of you care for her! And thats just Facebook, not the countless others out there who I know are praying for Madi but I don't get to directly communicate with. It's so wonderful and I can't thank you all enough! Your prayers are what have brought us so far and we will continue to need them as we embark on a whole new journey.

Madi has done amazingly well through the first 24 hrs with her new angel heart; the doctors warned us before surgery that the heart may struggle against her high lung pressure (consequence of her native heart disease) and she would probably come out on a temporary assist device for the new heart while it got used to her body. Well, her angel heart didn't need any assist device and was beating so strong against her high lung pressures that her surgeon couldn't even explain it!!! This little heart was hand picked for our little M&M no doubt about it. Her surgeon said he had never seen a transplanted heart do so well against such high lung pressures! Isnt that just awesome! God's handy work was yet again all over this one :). "This happened so the power of God could be seen in him" John 9:3.

She has done great so far but we still have a long recovery ahead of us. The first 3 months to a year are the most critical months for rejection so once we do go home we will have numerous trips to and from the hospital to make sure her anti rejection meds are working as they should. Most transplant recipients deal with rejection throughout their life and take medications every day to keep their body from rejecting the organ. She will have ups and downs, good days and bad days and best case scenario her heart will last until she is in her late teens and she will have to get another transplant or an artificial heart if they have such a thing by then. But it is all a million times better than what she has been dealing with since the day she was born and we will take each day, month and year as they come with open and grateful arms :)

In the mean time, I can't believe that we will get to go home sometime soon!!! Austin and I bought our new house in November but as a family we have never even lived in it! It doesn't even feel like "home" yet but once Madi is there it will shed a whole new light on things, I can't wait! It might be a month or so until she is outa here but hey, at least there is a light at the end of the tunnel:) Once we're home we won't be able to have many visitors or take her anywhere for that mater as she will be so immunosuppressed that it is just too risky to expose her to many germs, so if you don't get to physically see her for quite some time that is why! Luckily, I am a huge germ freak and don't mind it so hopefully that will help (or hurt.....I haven't decided yet, lol) but she's pretty much been on house arrest a large majority of her life so it won't be anything new to us. Just overjoyed at the thought of sleeping under one roof with my hubby, baby girl and two big dogs :)

Well, that's about all I have for now! I can't thank you all enough for all the prayers and please continue to pray for Madi as we are not even out of a very critical period right now. She has done great so far and will only continue to do so through God's watchful eye. I hope you all are enjoying the start to your summer!! Oh and.......if you aren't yet an organ donor please please sign up:)!!

Love Tabi

Learning

Hi Everyone,

I'm happy to report we are out of ICU and have been for 3 weeks now!! Woo hoo! It's been so nice to be out of there; no constant beeping, noise and lights but some peace and quiet where we can rest and just hang out together on the couch and watch 101 Dalmations, Madi's all time favorite movie by the way. No big surprise though, she's obbssessed with dogs, mostly big dogs, can't imagine why that would be?? Lol, yes we do Face time with her brothers Huck and Kodiak at the house when we can so the three siblings can see each other :). Madi tells them "hi" when she sees them, so cute!

Anyway, all is going very well here, we're maintaining and just waiting for her gift to arrive! Really trying not to think about it and just keep going on each day because if I think about it I wonder, when will it come? Why hasn't it come? What a terrible day that it will be for the family who donates but a great day for us? That in itself is difficult to think about! So, when I start to go down that road, which I clearly have, I just try to quickly get off it because it doesnt get me anywhere but anxious and upset "So dont worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today" (Matthew 6:34). Isn't that the truth! Today has enough to deal with to worry about tomorrow. Duh, so just worry about today, no big deal! I wish it was that easy but it's not supposed to be easy I guess; learning to use our faith in God instead of our own strength to get us through each day (each week, each month, each year etc.). Again, something I admit I am really crappy at but I'm getting better each day I think. I've always been one to think that nothing is done right unless I do it myself, but what if what you want done is your baby to get a new heart? Obviously I can't do that myself so it becomes pretty clear that not only can I not accomplish that task on my own but really who was I kidding prior to Madi? I can't do anything by myself, I have to let go and let God. Again, I really wish It didn't take my baby needing a heart transplant for me to learn this! Whoever knew and didn't tell me where were you! I'm sure I was told I just never listened. Funny how that happens!

This whole experience has made me a completely different version of myself, I don't know if it's a better or worse version, just different. I told Austin once, I feel like one of those soldiers you here about coming home from war where they struggle to live a normal life. We havent been to actual war but we have been in a battle to save our daughters life since the day she was born. It's something that forever changes you and makes you think about life in a completely different way. We, like soldiers, have seen and done things that no parent should ever see or do but yet I think it has made us more appreciative of the life we are currently living because we know it can be a lot worse and Madi can be a lot worse. I just hope that never changes and we will continue to see the good and not the bad in each situation we are dealt. I will say that God gave me the best partner for this battle because Austin has a special gift for seeing the light even in the darkest of times. It doesnt mater what it is but he has a way of making things seem not so bad, just another gift God handed me; this gift just happened to be walking down the hall at RHS about ten years ago and caught my eye. I did have to stalk him a little in the end and ask him on a date myself but hey my "nothing is done right unless I do it myself" attitude worked out for at least one thing, lol :)

Over all we are hanging in there, making the best of each day and just glad Madi is doing so good! Our main focuse right now is Physical and occupational therapy, which are going well. We're just trying to build up the strength in Madi's legs that she lost after being sick for so long and having a stroke. Her left leg is really functioning well, almost as good as her right that wasn't affected by her stroke. Her left arm is a little more of a struggle but we knew it would be from the start. It has limited function but we're working on it and if I had to choose between the arm or the leg I would hands down choose the arm because we need the leg for walking, which the doctors say they have no doubts she will do with time :)

Sorry for such a long post, guess I had a lot to share! Thank you as always for all of your thoughts, prayers, gifts, phone calls, texts, meals, etc. that you all have sent our way! We couldn't survive without you!!! I've attached a few recent pics of Madi as well!

Love Tabi