Girls just wanna have fun!

It's hard to believe that just a year ago, Maddie was lying in a CICU baby warmer bed, sedated, paralyzed, being pumped full of meds, trying to heal that little 5 lb. body with a walnut-sized heart. Watching her recover those first few days after her first open-heart surgery was so difficult. Time seemed to tick by so slowly. She was sick and pretty much lifeless. I can only recall bits and pieces from those days.

I would have never thought we'd be having this much fun with her a year later. Watching her transform from that to where she is now is simply remarkable! Just a year later, our baby is into everything! She's crawling everywhere, finding toilets with the lids left up to splash in (yes, it's gross and we're working on this one), she be-bops to music, and she's cruising around furniture. Mooms devours mac & cheese, kisses her baby doll, yells at the dog and cats, is now 19.4 lbs!, and has everyone still wrapped around that little heart of hers. We've had lots more fun in 2009, besides her birthday party, so here's a few pics to prove that girls do just wanna have fun...Time sure flies when you are!!!

Look at her now...eating chocolate pudding!

Teagan's 1st birthday party this past weekend...celebrating with the Maxwell's was so much fun! Teags is the cutest and our girls are quite the pair. Happy 1st Birthday Teagie!!! We love you heart sis :)

Scooting around with Teag's at the Gym

Maddie's head stands!

Taking a break from all her gymnastics moves...

A playdate with Brooke...her mommy, Carrie, and I were also friends when we were this little!

Emma, Maddie & Brooke with "not so fun" faces and in need of naps after the fun they had

Wearing her favorite blinking tiara! She loves wearing it and when she successfully gets it on her head for a second or two, this is what she does...kicks and shrieks of happiness! Her daddy tends to put this on his little girl often, she's literally daddy's little princess!

Plenty of kisses and cookies...ok, she does eat healthy food too! Promise!

Maddie always has fun with Nany...even at doctor's appointments!

Grandma spoiling Maddie with cake at Jill's 1st birthday party...it was a great warm-up for her upcoming birthday!

Posing and playing with the Allred girl cousins: Jadyn, Jillian, Randi, Savanna & Maddie. Savanna (holding Maddie) is doing the "jump rope for heart" in honor of Maddie in her PE class this month! Thanks Nanna and good luck!

Lots of fun with heart friends!!!

Meeting a new heart sister, Carlie...and at Disneyland of all places! FUN!

Maddie with her friend Ava after their first tea party with mommy's and grandma's, this is the expression you get when too many women are saying "CHEESE"! They look spooked!
Maddie & Kylie making cousin Tripp cry, isn't that what girls are supposed to do...make boys cry? Not really, he's just crying because he keeps getting mistaken for a girl! Such a pretty little guy!

We're sure enjoying all of the fun this little girl has brought us!!!

Daniel

I got a very sad phone call that Daniel, a heart buddy, will be withdrawn from life-support this evening. I've mentioned Daniel in a few other posts...he's 2 days older than Maddie, has HLHS and they shared an ICU room their first week of life as well as after their first surgeries. They don't have a blog or carepage so we've kept in touch a little through email and when we've been over in Seattle for appointments. He had a heart transplant about a month ago and had a difficult time, he'd been on ECMO, came off of it, and he was just starting to rally. I visited with Leah (Joshua's mom) this afternoon and she said that Daniel and his parents had a great day together yesterday. Unfortunately, he coded this morning and too much damage was done, so he is on ECMO again until all of the family arrives to say their goodbyes. Please pray for his parents, Heather and Mark. Daniel never left the hospital due to his broken heart, but he will finally be HOME now... God bless you sweet boy, we won't ever forget you.

HEART CATH CANCELLED
Also, Maddie's cath has been cancelled...it was supposed to be tomorrow morning at 7:15 but she was warm and cranky after lunch time so I took her temp and low and behold, she's funning a fever of 102! Came on quick. So, it's now rescheduled for April 22nd. Her fever has come down with Tylenol but she's just not herself. It's best to wait and get everyone healthy before her procedure...we're sick of being sick around here! But it's nothing in comparison to what others are going through- our hearts go out to those families.

What a party!

Maddie's ONE! We celebrated her special day with a cupcake themed party and I had soooo much fun planning, decorating and adding those special touches to a GIRL's party this time around, finally!!! Most all of our immediate family was here and our good friend Barb came to take pictures, thank you Barb!!! It was a wonderful evening filled with good food, conversation and tons of action (we're a bit crowded in our little home.) Miss Maddie seemed to just take it all in. She was calculated, quiet and calm with very few smiles...way to break her into a big crowd of people on her first birthday, right?!? She was oh so serious but seemed to like her special birthday and all of the fun that it brought. Thanks for coming everyone and sharing our special day...we love you all! Our "little cupcake" turned one and we all enjoyed the birthday fun! Here's some pics of Maddie's big day...

Stuck to my hip was where she enjoyed to be!!!
Auntie Lesa chatting with the girls about shoes, her favorite too!
Aunt Danyel & cousin Jillie...she's 6 weeks older than Moom's
Playing in the boy's room was Maddie's other favorite place to be...
Grandma Allred & Nany Stewart holding the "heart sisters"
Great Aunt Kerry...my dad's baby sister
Our BFF heart friends, Susie, Teagan and Gavin came up...we always love spending time with them and we both teared up when the girls were CRAWLING after one another...we used to dream of this day together... Teag's turns one in a week and we can't wait for her big birthday bash :)


Cousins, cousins and more cousins!
The pull-string pinata was a hit, what kid doesn't like candy?!?

One big, happy family!

Her big brother's helped out by blowing out the candle.

She was very "lady like" with her cake...

Loads of presents...tiara's, tutu's, purses, a quilt, tons of clothes, and more, she's one spoiled little girl! Even her surgeon, Dr. McMullan mailed her a book! How special is that!!!

We so enjoyed reading all of the wonderful comments for Maddie, I probably checked the blog 20 times a day! She is such a lucky little girl to have so many who love her and wish her well. Thanks so much for all of your support this past year, we truly appreciate it!!!

A letter on your first birthday...

Dear Sweetest Baby Girl,

Today is your first birthday Madison Grace...a day that your daddy and I dreamed of, a huge milestone that we were unsure would ever come due to the fear that paralyzed us a year ago. We tried to prepare for the struggles you'd have to endure and we consoled ourselves with the fact that we had no choice; to have you, you'd have to undergo countless procedures in your life and this was out of our hands. Maddie, you have been a wonder from the start...to share some of these many "wonders" from your birth...you unexpectedly came a month early, I labored all day with you then your heart rate suddenly dropped due to the "life line" being compressed so the doctors had you out in minutes via crash c-section, your apgar scores were initially a 3, all of this was so sudden, a complete shock, and incredibly stressful since you weren't due until April 14th~but you fought through all of these obstacles! I pleaded with the doctors just before being put-under for the c-section that they'd save you and in the midst of the crisis, they did...YOU made it! Once you were stable, we got to see you for the first time for just a few minutes and immediately, I knew that everything we'd already gone through and would about to endure was going to be worth it. You were a beautiful, quiet and peaceful little soul and we instantly knew that you were extra-ordinary. That first week before your cath and open-heart surgery was truly amazing. It was so much work for you just to breathe and the erratic movements of your chest reminded us that your heart was indeed, broken. The side effects from the meds made you not want to be touched, you were easily startled and agitated, yet when we had the opportunity to hold you (a total of 3 times your first week of life) you were incredibly calm and quiet. It's as if you were telling us that it all would turn out fine and to not to worry. Maddie, you comforted us in the midst of your fight. Those days we spent in the hospital are memories I'll never forget, and ironically enough, I would never trade them for anything...these wonders made us grow and this growth happened because of you.

This past year, you have brought us more fulfillment, joy and gratitude to our lives. Through you, we have learned to rely more on God and have felt His presence more than ever before. In your 12 months, we have endured many seasons...you've brought us to our knees, to tears, more smiles to our faces, and filled our hearts with true happiness. We take so much for granted and you have taught us to count each and every blessing, the good and the bad, since every blessing in life isn't necessarily suger-coated. We've learned to love the simple, quiet times and simply "stepping back" has brought our little family so much closer. We've learned to love nothing to do, no where to go, and to just enjoy each other for "what is" since life can change so quickly.

Maddie Grace, your heart is special but we've learned of a soul that is even more special and that's you. God created you perfectly, with a custom-made heart, since He knew you would be able to endure what it brought with it. His faith in you is ever-lasting as is His love. I've argued with Him many times that there is no way that He can love you more than your daddy and I do, but He does sweet baby girl, hard to fathom but true. Your daddy and I have had to "re-hand" you over to Him and so far, He's given you back...we are ever so grateful and humbled. We are simply in awe of your fight, your resilience, your strength and your ability to overcome the odds. You may only have a half of a heart but what a powerful little engine it is! We're simply amazed by you! How we've been so lucky, we'll never know, but I have a feeling that it's YOU and not so much the luck in this equation. You have touched so many lives in your first year of life and anyone who meets you is instantly "roped in". God has a very special plan for you. Today is a day for us to celebrate...to thank our Father in Heaven for the gift of our first daughter and to dream of "what is" and what is to come. Maddie, you are an incredible little girl like no other! Happy 1st Birthday our beautiful, sweet baby...and thank you for choosing us! Our hearts are so full.

I Love You, Mama

Comments for Maddie's Big Day!

As we approach Maddie's 1st birthday... (on Friday, can you tell I'm a bit excited?!?), I thought it would be fun to have everyone leave a comment in honor of her turning 1! We LOVE getting comments and since I'm planning to get this blog printed into a book after her birthday, it will only be complete with comments from her "fans"! We can't celebrate her first year of life without considering all of those who've supported us through our blog. Our site-meter tracks our visitors yet we don't know who all of you are, just that we have on average over 180 unique visitors a day, so we'd love to "meet" all of you, even if you're a new visitor to our site!

Please “sign” this entry so that one day we can show Maddie just how many people knew her, supported and prayed for her, and learned more about CHD's because of her life! Don't be shy...we cherish all of our comments and you don't have to write anything but your name and where you're from if you'd like! THANK YOU!!!

Here's how to post a comment if you don't have a google account or a blog...
1) Click on the Comments at the bottom of this post
2) Type your message in the "Leave Your Comment Box" and sign your name/location
3) Choose an Identity by clicking the Anonymous circle
4) Click Publish My Comment, you're done!

doctor's appointments=tears

Maddie with our nurse Amanda from Dr. Allred's office. She's always in tears around Amanda which about puts poor Amanda in tears too! She's been our nurse for all 3 kids since birth; every shot, temperature, and measurement has been taken by her. She's the sweetest!

We've spent a lot of time in doctors offices this week with a fussy girl. It's Maddie's least favorite place to be. Tuesday was Maddie's nephrology appointment in Seattle to follow-up on her kidney issues. She had a renal ultrasound and visit with Dr. Jackson and Dr. Hingorani, and thanks to a glitch in scheduling our "big plans" to shop didn't work out due to spending most of our day at Children's. Kidney wise, her left one showed some growth and is now in the range of being "somewhat" normal, which was great news. On ultrasound, they can't really tell the function but due to that it grew, they think it must be working. She is still being treated for reflux with the Bacterim and they don't have any plans of taking her off of that until she's at least 2 years old due to the risk of infection from UTI's and being a cardiac kid. It was a big relief to know that her kidney's look good and the ureters have improved on ultrasound. Yeah!!! She was in tears throughout the entire ultrasound but flirted with Dr. Jackson at the end of the appointment, after she realized there was no "hurt" involved, it was cute.

For the past month, her cardiologist and I have been in touch regarding Maddie's sats. They have been on the low end, consistently hanging anywhere between 76-82. Her sats have never been very high, even after her Glenn, so Maddie has a maintenance heart catheterization coming up in 2 weeks. If you're not familiar with what a cath is, you can read about it here. Dr. Vernon wants to rule out whether she needs a little "tune-up" with ballooning or a possible stent if there is narrowing or scarring from her surgeries. Maddie's pulmonary arteries have always been small and narrow, so they may need tweeking to get those sats up and more blood flow through them. We need them to grow! Of course I don't want to have her go through this, there is always risk with a cath and she'll have to be put under and intubated. She's doing so well and I don't want anything to jeopardize this! But it will be nice to see what's going on in that heart of hers since this is the most accurate way of diagnosis. We may learn that everything is just fine and her sats are just going to hang on the lower end. So, that's where we're at with her heart.

Last but not least, Maddie ran a fever all day yesterday. She also had to go in for her Synagis shots to Dr. Allred's. To rule out whether this was a UTI or not, she also ended up having her bladder cathed to get a good urine sample. It went smooth, came back fine, and she received her 2 shots, which btw, totals $3984.30 a month on our insurance EOB's!!! We get to pay $864.48 of that...yikes, we'll meet our deductible early this year due to those costly shots! (Had to share the real price since back in a December post I estimated the cost). It has kept her healthy from RSV though...especially since so many little ones in our town have had it this winter! The boys were with us as well and Cade also got some attention from Dr. Allred since he's had such a bad cough and refuses to eat lately. Of course, it's a viral thing so we're riding out all of the bugs we've acquired lately and hoping Maddie can beat this too before her heart cath procedure in 2 weeks. So two days in the doctor's offices at 3 hours each was enough for Miss Maddie and the rest of us! She knows what is up now and just cries from the minute we get there... she's still running a fever, is not herself and only wants held, so I had time to post, and one-handed at that!

Gracie

March 20, 2008 - March 2, 2009
Our lives were touched by this little sweet'heart'...

Gracie, you'll forever be in our hearts.