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