Fontanniversary & a heart re-check

waiting after her echo to see Dr. C

Today marks 3 years since this girlie's had heart surgery. We call this her "Fontanniversary" and try to recognize it in some way as it's a special day. May 24, 2011 was the day she completed the three-staged surgical repair on her heart, having her third open-heart surgery called the Fontan. Tonight we'll celebrate with chocolate cupcakes and her choice of movie, which I've been informed is "Beauty and the Beast" (the boys will be so thrilled!) 

In fitting fashion, we made a trip over to Seattle yesterday for a quick heart "re-check"...over the past couple weeks she's been extra tired, her sats have fluctuated between the upper 70's-mid 80's and we've noticed more blueness than we have in a long time. I'm glad she and I made the trip over. After an echo, Dr. C commented that she's developed more collateral vessels and when they can be seen on echo, they're usually quite significant (or we just got lucky) but they're also tricky to figure out where they're robbing blood flow from/or dumping it in. She's struggled with growing collateral's in the past, the question remains do we do something about them as he believes they'll just continue to grow. Some kids just grow them, Maddie is one of those kids. Her sats were 87-89% in his office, which is great & within her norm, so as of now, he'd like to wait. If she begins to trend down and stay down with her O2 saturation's, then she'll have to have it addressed in the cath lab and hopefully they'll plug her fenestration while in there. She still has some mixing of unoxygenated/oxygenated blood which causes her sats to be lower than if she didn't have a hole in her Fontan conduit. The best part of the day yesterday was just spending time one-on-one time with my girl-chatting during the drive, shopping at the outlets in North Bend, and having a nice lunch at one of our favorite places.

Subbing in Maddie's Kindergarten Class!

Little did I know that this girl would teach me so much...Having a child with a life-threatening condition has changed, stretched and strengthened me. It hasn't happened over night, accepting the unknowns of Maddie's future is difficult, but it has thankfully brought me closer to God than anything else I've experienced. I'm incredibly, eternally grateful. 

Happy Fontanniversary Maddie, you continue to amaze me each and every day! I love you so much!

it is well

Last month marked four years since I experienced the worst heart-break I'd ever known. Our baby was going to be born with an imperfect, fragile heart. The wonderful life I was living and perfection that I worked so hard for, and carried so much pride in, was suddenly shattered forever. The future I had brilliantly planned was taking a new turn. Our daughter would have to endure multiple heart surgeries and suffer more than I had ever experienced.

The outcome, even with the best scenario (which I believe we've been blessed with) meant she could never be cured, her heart would never be fixed and our little girl would always have a major health issue to contend with. All of our futures are uncertain but the uncertainty of hers as well as the quality of it, would always weigh heavier on my mind. The scar on her chest would be a daily reminder of this. Her CHD would never go away.

So many questions swirled in my mind; how could this have happened, what did I do, where are you Lord, and why? During this time, if I'd been asked, "is it well within your soul?" I would have screamed and lashed back "NO, ABSOLUTELY NOT!" Thankfully, I chose to blog on my "better days" and stayed away from the computer on the rough ones. Yes, as I've re-read old posts, I realize I probably sounded much stronger and more content with it than I really was. January 2nd-March 13th, 2008 were the darkest days I'd lived in my young 29 years. Acceptance of this was difficult to grasp.

Little did I know that when I felt alone and as if God had abandoned me, my family, and my sweet unborn baby girl, He was preparing me. I had to learn to give in. I had to learn patience. I was not going to get my way, I was not going to be in control, I needed to move over and let Him in. I learned to give in. I learned to seek Him, to pray, and to know Him more and now, four years later, I have a lasting relationship and reliance on God. I'm so very glad I was given this trial and thank Him for my time in the valley for I know it won't be my last trial. I may never have learned these valuable lessons without Maddie. I learned to finally trust God and how to give Him the glory in the good ones.

The most valuable thing I learned after bringing her home was when I realized, ultimately, Maddie's future was already written and the pressure was taken off with knowing this. Her care was very consuming and I put so much pressure on myself. When we handed her over for each surgery and procedure, I had to learn to let go and let God be in control. It's funny how when there is absolutely nothing you can do to change your circumstances...you find that handing it over is the only thing you can do. When I accepted that it was out of my control and put my trust and faith in Him, what a relief this was. Trusting in the Lord...what a blessing in my life. I can honestly say that, now, four years later, when things go wrong, and they do and will time and time again, because that is just life, my soul can still be well. He is always there.

"Chief of the Medical Staff" by artist Nathan Greene

Christmas & 2011

We had a great Christmas and a very busy month...between starting back to teaching preschool the first week of December, Sam and his siblings, continual lack of sleep, Xmas programs, family Christmas parties, an anniversary getaway trip to Seattle, a couple of ski trips to Mission Ridge, and just the holidays in general, well, you now know why I didn't sit down to post anything on the blog last month!

2 wise men and a star at our church's spontaneous nativity program

Santa surprised us at preschool!

Sam turned 2 months

the big sister...she loves her baby brother but has spoken up a few times saying "what about me?" when I'm paying too much attention to the little guy

the boys on Christmas morning

Santa made Maddie this darling dress-up closet! She's loving her dress-ups and accessories

Sam is a good "combo" of all of his siblings but has started growing eyelashes like big brother Cade's :)

Jace is a great helper with Sam and is awesome about walking him around when he's fussy and I'm in the middle of dinner

As the chaos came to an end last month, I was able to reflect a bit on this past year. I'm usually more sentimental when it comes to bringing in a new year...but this year I was so glad to see 2012! Last year was a very big year for us. We were still settling into our new home and all of the projects that it brought, I was in my first year of running/teaching preschool, we had Maddie's 3rd heart surgery and with that brought several trips to Seattle between appointments, a cath and ultimately, her Fontan surgery in May. Oh, and we had a baby!!! I'm happy to say we made it through 2011...there were times when I didn't know if it would all work out but thankfully we were also shown a lot of kindness and support from our family, friends and community which I believe took so much of the load off. 2011 will be the year that I finally learned how to "let go"...

I've felt like the luckiest girl in the world lately...our daughter has overcome three major heart surgeries, six heart cath surgeries, and lives a very 'normal' life despite having a complicated heart. Four years ago, when we received her diagnosis, I never in a million years would have thought it would turn out this well. I can honestly say that our lives are not centered around her heart anymore...and what a great feeling that is. We are so grateful for her, our healthy boys and the joy they all bring to our lives. Thank you 2011, you surely blessed us, taught us, and you'll always be remembered as a monumental one.

this little turkey...

likes to sleep all day and wake up every 2-3 hours at night. Yes, we're still on that newborn-type schedule. I don't know if you can predict "personality" at 1 month old, but this guy knows what he wants, when he wants it. There is no "talking him out of it" and he can be impatient and fussy or super sweet and cuddly!

We had a really relaxing Thanksgiving at Grandma and Papa's...enjoying family, good visits and of course, lots of food!
these 3 cousins have become quite the trio--they are much louder than I ever remember the little boys. They sure know how to have some fun! And, no, we did not coordinate their outfits, turned out so cute though!
Our cutie pie Sam was one month old last week!
And big sister was 6 months post-op from her Fontan surgery on Thanksgiving day. So, so grateful that a half-year later, we're here. I'm thankful for this...and so much more.

letting my face sparkle

We received the call last Thursday on Maddie's upcoming surgery. We were holding out for June for her Fontan surgery...but it is going to be in May. It's 3 months away...May 24th. I'm glad we have a date but it does bring a load of mixed emotions. I'd like to share with you something I've found very helpful lately, especially when the worry creeps in. Heart mom's...maybe this will help you too!

Recently, my mom and I were having a conversation on the subject of what we communicate as parents to our children. Action speaks so much louder than words. Do we live what we preach? What do we communicate to our kids? What does my faith communicate to them?

She shared with me a chapter out of the daily devotional, "Women of Faith" she reads. That particular day's excerpt was titled, Let your face Sparkle, written by Sheila Walsh.

"Be strong and take heart, all you who hope in the Lord." -Psalm 31:24

"I am not an alien!" my son announced one morning over breakfast.

"I'm so glad darling. Now eat your eggs."

"Do you want to know how I know I'm not an alien?"

"Absolutely," I replied.

"Well, when E.T. is happy, his heart glows through his skin."

"What happens when you are happy?" I asked.

"Watch," he said. Slowly a mischievous grin spread across his face till his eyes shown. "My face sparkles!" he announced gleefully.

I thought about that all day. I wondered what my face communicates to my son, to others around me. I see a variety of emotions wash across my boy's face every day, bringing shadows or sunlight.

We each have a choice: to be a blank sheet of paper, left to the mercy of the pen of the day's events, or to be settled in heart and mind that God is in control of every moment and to rest in that good news. The latter decision requires faith and resolve. Hope then becomes an action word. It moves from a crossing of the fingers and hoping for the best to a bold stance of reliance on God.

We don't know what this day will hold, but God does. We don't have the strength to face every unexpected heartache, but God does. So let your face sparkle!

I had other plans for "when" Maddie's Fontan would take place...but God's timing is best. I can chose to let worry and fear about her upcoming surgery ruin the days we all have together until surgery or I can chose to put those feelings aside, trusting in Him because God knows best. He is in control of this and my faith has to lie in Him. More than anything, I want our children to see my reliance on God and my trust in His plan. I have hopes and dreams for how this will all go and my plan sounds great to me--but I have to have faith in His plan for her (and for all of us) and all the while, let my face sparkle. Our hope is in the Lord.

Speaking of sparkle...this little girl LOVES to paint her fingernails and the more sparkle, the better! This was her idea after a bath this week. It's not tough to have a "sparkling face" with this little love.

being thankful

photo by Stacey Paysee
We have so much to be thankful for this year...growing, thriving kids, a relatively healthy year for Maddie, settling into our home and making new memories here, having opportunities to help others, and the love and support of so many in our lives. Blessed doesn't sound adequate enough for the gratitude we feel in our hearts.

Especially to God.

Time

"Nothing is worth more than this day." ~by Goethe

One of the biggest lessons I've learned through having a child with a broken heart has been the value of time. Since we began this journey almost 2 1/2 years ago, time has become more precious to me than it ever was. I've learned to relish my everyday routine as a mom and wife and all of the little, ordinary moments that I used to take for granted. My ideal day is just being home with my kids and Bryan, with nothing planned and just b-e-i-n-g. This is when my heart is filled with so much gratitude and thanksgiving. None of us know how much time we'll have here, and when your child is in a high-risk category, you value the time even more.

But with my awareness of the quick passing of time, I feel like it can't pass quick enough sometimes. I dread Maddie's next surgery but want it over with. I pray that researchers and doctors can find an "easier" more long-term fix for my daughter. But for now, a gortex conduit and usage of only 1/2 of her existing heart has to suffice. I read a quote from the Funky Heart blog today that was titled "Fontan" and the last line of his post struck me... a 2008 article stated “this imperfect circulation would still be the only surgical option for this difficult patient population.” Maddie fits in this population with her imperfect heart and imperfect circulation. And this deeply saddens me. They are still using the same surgical "idea" for this population of kids born with single ventricle anomalies since 1971. Although it's been revised many times over, it's not a fix or cure, it's not the best and in the end, it's just a Fontan. It's all they can do for her. And if her Fontan fails, her only recourse will be a heart transplant.

So where am I going with this? Last week, Bryan and I took a trip over to the Children's Research Institute for a tour of the Tissue and Cell Sciences Lab as well as attended a meeting with Dr. Majesky, you can read about him here. Our Heart Research Guild presented Dr. Majesky with a check of $10,000.00 raised from heart families across the state over the past couple of years. Fundraisers like the 2009 Summerfest Fun Run and donations given at our families' Christmas parties were a big contribution of the total gifted. We were proud.

These funds were raised for research from families like ours who want something better for their heart child. We learned that they'll be using this money as the funding to instigate a project, prior to ever submitting their proposals to the NIH, where major funding can be attained. We learned that only 10% of research projects actually get funding from the NIH so groups like our guild have a very important mission because before they even submit the grant, the project must almost be completed and show proof of its validity. And this takes time and money. Dr. Majesky was thankful for the funds raised and it will help with their Zebra fish research. This tiny Ganges River fish may be the key to understanding cardiac tissue regeneration and transplantation. Click here to read more about this. Seattle Children's Research Institute joins several other research facilities across the nation that have Zebra fish Aquarium labs to study and manipulate the Zebra fish genes. Incredible isn't it? It sounds promising but will Maddie benefit from what they learn with these tiny transparent fish in her lifetime? Again, it all lies on time. So for now, we will do our best to help raise money to fund this amazing research, in hope that it will speed along.

So for this day, I'm going to let my anxiety, frustrations, desperation and fear rest in God's hands. Only He knows what lies ahead for us and for our Maddie's life. It's in His time when she'll need her next surgery, it's in His time of when/if discoveries are made to fix cell mutations that cause CHD's and it's in His time when heart defects will no longer be the problem that they are today. And since I'm letting it rest with my Savior, I'm going to simply enjoy the fact that Maddie went poo on the toilet yesterday (her idea for the first time), and during dinner last night, she was antagonizing Cade by pulling his hair and pouring her apple juice on him, that she asked Jace to give her a "wedgie" last night while they were rough-housing, and that she actually went up and down our stairs today 4 times, the most that she's ever tried!!!, and that she tagged along on the butterfly catching expedition with her big brothers last evening.

Time is a gracious and miraculous healer and it's out of our hands. Enjoy today. I am.

Today I'm tired. I'm sad. I try to stay away from the blog when I'm feeling this way but I gave into sharing my thoughts this time around. My heart goes out to a sweet friend of mine. She lost her 5 month old nephew to SIDS, her sister's baby. This family has endured so much over the years with the unexpected loss of their mom and now this untimely death. In times like these, I wonder why does this happen to such good people? Her sister now has to face the unimaginable...the loss of a child, which is something that haunts me daily, with my healthy boys, and especially with my baby with a broken heart. It's any mother's worst nightmare.

Life can change so quickly. We're told to embrace each day and moment we have here but how do you do this when you're hurting? I'm tired of reading about babies and children lost to CHD each and every day. I'm so saddened when hearing about causalities such as this. My heart goes out to too many families who are dealing with the loss of loved ones. Those who are trying to live a normal life despite having to deal with chemo, radiation, surgeries, and illness. The destruction and grief in Haiti. I'm tired of watching my little girl endure too many procedures, pokes, and knowing it's never over for her. Knowing that her heart can never be fixed is simply exhausting. There is no cure for her or for many of our little heart friends. I want to take it all away for her and I don't see any "fairness" in any of this. Just as my friend Michele would like to take her sister's pain away and fix it, I too want to fix my daughter's heart and spare her from any more pain. I guess it's that helpless feeling or maybe it's just the time of year that's brought me into this slump. The season I was in exactly 2 years ago from now was the hardest time of my life. We had just learned that our baby would be born with a broken heart and our lives were forever changed.

I know that I am blessed to have 3 beautiful children, a wonderful husband, freedom, a great family and support system, and many more blessings that I could list. Why is it that I'm still down? I really have no right to feel this sad when there are so many worse off than me today and I have so much to be thankful and happy about. I have my children. My heart baby is doing well. We have been the lucky ones.

In my times of confusion, doubt and sorrow, I listen to music. It is therapeutic for me and seems to feed my soul. I also bottle much of my feelings up over time, then when something like this happens, it seems to unleash itself. After talking to my friend Michele yesterday, I did just this. I unleashed. I stayed up much too late, reading my bible, praying, and listening to music. I wanted to feel some peace and feel closer to Him. I wanted to gain some understanding. As I was searching for something to make me feel better, I came across this song. Just when I was wavering in my faith, I was simply reminded through these lyrics that we do have an Everlasting God. He's always there. In these times when we're angry and so filled with sadness, asking Him why, we are to call on Him. And only hope remains, through Him. Someday our pain, grief, and worry will all be gone, all because of our Savior and the price that was paid for us. Our Redeemer. Our Everlasting God. Even though there is much to be sad about, my heart is filled with His promise.

One thing I know that I have found
through all the troubles that surround
You are the rock that never fails
You never fail

One thing I know that I believe
through every blessing I receive
You are the only one that stays
You always stay

You never change
You're still the same
You are the everlasting God

You will remain
After the day is gone
and things on Earth have passed
Everlasting God


Everlasting God by: New Life Worship

Reflecting

August 13, 2008

A year ago today, I wrote these words...
"These past months have really flown by and I've caught myself dreaming more about what Maddie's future holds for her. I used to not let myself even go there, it was too difficult to think about the "what if's" and uncertainties of the surgeries and procedures she had to go through in order to get here. She's doing so well that it feels good to talk about our future and all that we have to look forward to! A huge weight has been lifted now that she's 2/3 of the way there with her heart repair and since the next surgery won't be for a while (we cross our fingers), we can get on with LIFE again. What a wonderful feeling!"

Yes, I can officially say we've gotten on with life! Time is flying by!!! Having 3 kids all under the age of 5 and all on the move now, has been a little crazy and so fun.

Maddie's heart is only "occasionally" thought about now (ok, still on a daily basis but not on a minute to minute basis like before). I'm not consumed by her broken heart and this is a BIG improvement. Instead of dwelling on what she'll "miss out" on in life like I used to, I've chosen to focus on all of the positives of her...and not just her heart. She's an amazing little thing and will have much to offer this world by being Maddie, not the girl with the 1/2 heart.

Yes, a year of dreaming about Maddie's future has been so healing. I've moved on from the heartbreak and anguish of having a baby with a complex heart to knowing and loving a beautiful, graceful little soul full of so much strength and a wisdom beyond her years. God knew what he was doing when he gave Maddie this heart.

This 17 month baby girl is a blessing and has a strength we can learn from each and every day. On a minute to minute basis.
August 13, 2009

Attitude

"I believe the single most significant decision I can make on a day to day basis is my choice of attitude. It is more important than my past, my education, my bankroll, my successes or failure, fame or pain, what other people think of me or say about me, my circumstances or my position. ATTITUDE is that single string that keeps me going or cripples my progress. It alone fuels my fire or assaults my hope. When my attitudes are right there is no barrier too high, no valley too deep, no dream too extreme, or no challenge too great. We have the right to choose our own attitude, bitterness or forgiveness, give-up or go on, hatred or hope, determination to endure or the paralysis of self pity. Life is 10% what happens to us and 90% how we respond to it." ~Author Unknown

I have had this quote (thanks to my mom) on our refrigerator for the past year. It is Sus' favorite, she has "preached" this one to me and my brothers for years. I do think it says it all...our choice of ATTITUDE is a very powerful decision we make each and every day, even on a minute to minute basis. There are times when I allow fear of "what could happen" with Maddie get the best of me. I tend to borrow trouble and look too far ahead on what is to come, what obstacles she'll face, and what she won't be able to do. As her mother, I often worry about "messing" her up since I'll always have her HEART looming over every decision I make in raising her. It's something you just don't forget about. I tend to take it into account with every little thing. I'm learning that this only ruins right now and the precious time we have together. So this quote is a great reminder for me when I need to quickly redirect my thoughts, emotions, and change my attitude. We only have right now. We all have trials here on earth and there is always someone with a bigger trial than you. These facts always put things back into perspective for me. I am so grateful for the heart parents before me, their wonderful advice, tips and outlooks on raising a child with a CHD. I so enjoy reading the blogs of those who've "paved the way" for my daughter, they are really the pioneers in the heart world.

Paul Cardall's blog is one that I love and offers so much hope to families dealing with CHD's. He's just an amazing person. It's linked to ours under Kindred Hearts, and I strongly suggest that if you have some time, please take a look at his journey and this article, click here to read it. He's waiting for a new heart, has lived with HRHS for 36 years, and reading his parents and his wife's point of view in the article was truly emotional and inspiring for me. Paul and his family are wonderful examples of how powerful our attitudes really are when we have the determination to endure, even when we find ourselves in the valley.

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

Prayer Request

Heart babies are always in need of prayer but a few of our special friends really could use them right now...Gracie received a new heart yesterday but is having some major complications. Her family's blog is the first one I ever found (from a strangers comment left on our blog), just days after Gracie was born and while we were still in the hospital with Maddie after her first surgery. Her mom had many links to other heart babies on their blog and this is where many new friendships began. I have followed Gracie these past 11 months and she's pulled through so much. Our girls are just a week apart so my heart is so heavy for them and sweet Gracie Girl...they have had a very difficult "heart journey".

Karlee, Daniel and Joshua are still in the CICU recovering from their transplants as well. Daniel was put on ECMO and has been having a tough time...please remember these sweet babies and their families in your prayers tonight.

I HEART heart friends!

Can I just say that I cherish all of the heart families we've met on this journey? Our "Kindred Hearts" list just keeps growing and I have quite the attachment to these heart babies. I've also met some amazing adult CHD survivors who bring so much hope. I've read too many heart blogs and carepages to count (I don't even want to admit this, I'm a bit of a "blog addict/stalker" in my downtime.) But what I've learned through all of my reading is that we are not alone. We share so many of the same fears, frustrations, worries, hopes and dreams for our little ones with special hearts. It's good therapy and cheap too. God has put some pretty amazing people in our life and we've met them through our hospital stays at Children's and through the "blog world" and email. Our paths have crossed because someone has reached out who's been there, it's a great feeling.

Here's a few things that I've learned most heart mom's have in common: 1) we keep a huge stock pile of Purell, 2) we have a keen sense to spotting the sick & germy, 3) we can rattle off our child's weight, sats, heart rate as well as how many milliliters they've eaten in a day, 4) we have watched our child turn too many shades of purple, 5) we have had to hold our child down for countless procedures while trying to comfort them at the same time, 6) we have learned to "let go" of the small stuff, 7) we have had to kiss our little one goodbye then watch them be wheeled into the OR to have their chest cut open, 8) we have had to ask for and accept help more than ever before in our lives, 9) we have learned to be patient and take it a day at a time, 10) we want to give back and help others who are behind us in this journey!

To celebrate this post's title, loving our heart friends, I'd like to share some pictures from the fun weekend Maddie and I had in Seattle with our friends, Susie & Teagan. We hit the big CHD support group meeting, Heart to Heart, at Children's a couple of weekends ago. Since we were at the hospital, we took the opportunity to do a little visiting at the CICU, meeting both Joshua and Karlee's mom's (Leah and Devon). It was great to see them and to be able to chat for a bit. Our nickname, the "sunshine committee". The Cardiac ICU isn't the happiest place to be in; the worry, stress and grief is so evident on almost every parent's face you see. Feelings come rushing back each time I step foot in the train elevator that leads to the ICU, from our days of being there and I only hope that Maddie brings some hope to parents going through those tough times. We also got to visit Ann, one of our favorite nurses, and we brought some "healthy" Krispie Kreme's for the ICU staff as well! The meeting was very informative...Dr. Cohen, chief of Cardiothoracic Surgery as well as Dr. Lewin, chief of Cardiology, joined in to answer questions and speak on behalf of the Heart Center at Children's. It's always interesting to hear the doctor's views yet as a parent, some of the information we hear is tough to swallow. Maddie and Teagan's, as well as all single ventricle kids, staged surgeries are still fairly new procedures so there isn't much history to look at for data and statistics. Thank God they were born in 2008 because 30 years ago, in our part of the country, there was nothing they could have done for them. It was amazing hearing how far the Heart Center has come and we are so proud that Maddie is a patient of their excellent program.

We also enjoyed a fun evening and dinner with more heart friend's, Mimi (Mia's mom) and Jesse (Luke's mom). It's always so great to visit with other heart mom's!!! Here's a few pictures from our great night...the girls even got to meet Mia when we went to pick her mommy up! Of course there was no baby mauling involved... she's doing so wonderful only 2 months post-transplant and she's just so PINK! What a darling, sweet girl and we felt so honored to get to see her (Mimi's idea :O)!





We also had coffee with Ray, our favorite echo gal and friend, which was fun. She's always a blast to be around! So we had a great weekend and the girls were troopers, minus the car ride over and back for Miss Maddie. Poor thing, she's hating the car again. Ugh. Sus and Teags are always so much fun and we can chat for hours. Thanks for the fun weekend girls!

It's CHD Awareness Week!

In honor of Congenital Heart Defect Awareness Week: Feb 7-14, I'm planning to post daily with something "heart" related...so to kick off our week, I'd like to share a testimonial that I was asked to write about Maddie for the American Red Cross. It's being published in their book to let others know the importance of giving blood as well as spreading awareness that lots of babies need blood too! With Maddie's heart surgeries, she was given blood transfusions post-op to help with her counts and to give her a boost for healing. The by-pass machine can also be primed with donor blood prior to being put on heart/lung bypass, so the importance of this is critical with heart surgery patients. About 40,000 units of blood are used every day yet only about 5% of adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often a heart child. We have learned first-hand what a gift it is. So for most of you, this is a little "recap" of our little sweet'heart'...
I never thought I’d know so much about the human heart, especially what could go wrong with it but when our third child was prenatally diagnosed at 26 weeks with a Congenital Heart Defect (CHD), a new world opened up for us. Our baby’s heart may have been broken but our hearts were shattered that day. We learned that without intervention, she would not survive and we were given three options: termination of the pregnancy, a three-staged surgery, or the comfort care method which was to take our baby home and let her pass away. We were lucky to have the surgical option and chose the three-staged operations route. Our “heart journey” quickly began.

Madison Grace Allred, “Maddie” unexpectedly joined our family on March 13, 2008, arriving a month early by an emergency, crash c-section at the University of Washington Medical Center in Seattle. Her birth was a very scary experience and we all feared the worst with her early arrival, but we quickly learned that our 5 pound baby girl was tough and would overcome any obstacle that came her way! After stabilizing Maddie, she was transferred to Seattle Children’s Hospital Cardiac Intensive Care Unit where her CHD diagnosis was confirmed: Pulmonary Atresia with Intact Ventricular Septum, Ebstein’s Anomaly, Atrial Septum Defect, Patent Ductus Arteriosis and Hypoplastic Right Ventricle. In short, the right side of her heart was severely underdeveloped and simply non-functional. On day 6, Maddie underwent her first open-heart surgery called the BT Shunt which basically created a bypass to get the blood to her lungs for oxygenation since her own anatomy did not suffice. She did fairly well post-op and after spending her first 19 days of life in the hospital, she was discharged and finally able to come home! It was a bitter sweet moment for us. Maddie needed a feeding tube the first few weeks after coming home but finally regained enough strength to orally bottle feed. But we knew that our stays at Children’s were not over…in 4-6 months, she would outgrow the shunt and need another surgery in order to survive.

At exactly 4 months of age, Maddie underwent her second open-heart surgery called the Bi-Directional Glenn. She cruised through her recovery and was home just 5 days after another big heart surgery! With each surgery, she was given blood to help with her counts and help give her healing a boost. Donor blood is also used to prime the bypass machine, so we have learned, first-hand, the importance of giving blood and my husband and I have now become regular blood donors.

Since her Glenn surgery, Maddie has been growing and thriving. She is developmentally on track despite her early birth, hospitalizations and procedures she’s endured. By looking at her, you would never know she has such a special heart. She is cyanotic (bluish tinge to her skin) since her oxygen saturations hang around 80. She is on only 2 medications and we visit her cardiologist every 3-4 months now. We are waiting for her third open-heart surgery called the Fontan Procedure which is usually done between 2-4 years of age. Upon completion of this stage, her heart will function as a single-ventricle, the left side of her heart doing all of the work while blood just passively flows to her lungs. She will be a single-ventricle or half-heart for her lifetime. Even though we are not “out of the woods” yet and coping with a heart defect is not easy, Maddie has shown us a strength that we can all admire and strive for. She is our little miracle and brings such HOPE to our family! We thank God every day for the gift of Miss Maddie and the many blessings that she has brought to our family!

Tagged

Our friend and AWESOME preschool teacher posted this tag today on her blog so I thought I'd play along too. I enjoy reading tags on other blogs and I'm sure that I'll like reading this again (in that "blog book" I'm planning to get bound someday!)

Tagged:

Five Years Ago I:
1. Was enjoying staying at home with Jace, he was 6 months old, after teaching for 3 years
2. Decided we needed some "color" in our house...It was a MUCH BIGGER painting job than I anticipated
3. Was planning our trip to New York and Washington DC to visit Derek & Carly's family
4. Finishing the last classes (at night) for my masters degree at CWU
5. My mom finally talked me into quilting! Started and finished my first one called "Snowball Star Crazy" (a "Buggy Barn" quilt for all of you quilters)

Five Things I did Today:
1. Ordered Maddie's birthday supplies
2. Did a couple of loads of laundry as well as put 3 full baskets away
3. Took the kids to the park for a playdate with friends and cousins
4. Made dinner for my brother's family for Tripp's arrival (I'm 3 weeks late)
5. Spent the afternoon at my folk's visiting and the boys got to play in the dirt with cousin Jett

Five Places I have Lived:
1. Symrna (Royal City)
2. Ellensburg
3. Royal Slope (still Royal City)

Five Jobs I Have Had:
1. Cleaned Houses
2. Preschool Teacher at Migrant Head Start
3. Taught 3rd Grade at Red Rock Elementary
4. Stay-at-home mom
5. Bookkeeper for the livestock books, also Bryan's "main hired-woman" when he needs me at the feedlot or orchard

Five Things I Would Do With A Million Dollars:
1. Have my kid's college educations secured
2. Invest for our retirement & future
3. Generously give to CHD Research for single-ventricle studies, like stem cell research, to help find a way to permanently fix my daughter's heart as well as many other kiddos' hearts with complex heart defects
4. Take an amazing vacation with my family to somewhere warm & tropical!
5. Pay back my mama by taking her on a shopping spree!

I want in 5 years:
1. my kids & our entire families all here, healthy, and happy
2. to be passed Maddie's final surgery and for her heart to be doing well
3. to be living in our new home
4. to have had another baby
5. enjoying life with my husband of 13 years and our 10 year old, 8 year old & soon to be 6 year old, plus any addition...busy times are ahead for us!

I tag anyone who wants to do this but especially my sister-in-law's: Sybil & Jessica and fellow Heart Mom's out there! Great way for us to get to know one another better! Have fun!

Today marks the day

A year ago today, our heart journey began. We had taken the boys with us to the follow-up ultrasound, and little did we know of the news we were about to hear. We knew that this ultrasound was to double-check all 4 chambers of the baby's heart, since at our routine 20 week ultrasound the tech had problems finding all 4 (Maddie was breach at that ultrasound so they didn't make a big issue of it), as well as to check the placement of the placenta...it's weird, but I was more worried about the placenta. With each of my babies, I've had a follow-up ultrasound to check something so I wasn't too alarmed with this one. I had no idea that the world of Congenital Heart Defects existed.

I'll never forget how I felt while lying on that ultrasound table, the technician quietly performing her tasks, not uttering a single word to us even though we were pelting her with questions. We sensed something major was wrong at that point, just by her facial expressions and the tense atmosphere. Our questions stopped. After about 30 minutes of this, she went to get her supervisor, the radiologist, to see if she could get better pictures of what they needed. While she was out of the room, Bryan and I sat quiet, shaken, and in shock of what was happening. We were completely blindsided. After she returned, which seemed like an eternity later, we were told that our baby's heart had some suspected abnormalities. The right ventricle was very small, she mentioned the word, "hypoplastic", and they were referring us on since they didn't feel that they should make a diagnosis. We asked many questions but the radiologist and technician wouldn't really answer them. Listening to them whisper back and forth while they were looking and pointing at the screen was extremely agonizing...we felt so helpless and confused.

After the ultrasound was complete, we were told to go wait in the waiting room while they talked to my doctor about the findings. Bryan and the boys went out to wait while I made my way into the bathroom where I completely lost it. I couldn't fight back the tears and found myself uncontrollably sobbing. How could this be happening to me? my baby? my family? WHY? This wouldn't be the first time I'd ask the question "why" (I still do at times), or that it wouldn't be the first time I'd lose it in a hospital bathroom! That's where most of my weak, furious, and desperate feelings have been unleashed. God and I have had some rounds in hospital bathrooms!!! When I finally composed myself, I went out to wait with my family. As I sat down and looked ahead, through bleary, swollen eyes, I noticed that the pregnant, young girl sitting across from me had a very large tattoo on her neck/chest. Now, I don't have anything against tattoo's but this one definitely caught my attention and just rubbed me the wrong way. She was wearing a low-cut shirt to reveal the big colorful artwork....her tattoo was of a heart. Not the shape of a heart but the anatomy picture of a heart. Her tattoo was of an actual heart, I can still see the aortic arch! God does work in mysterious ways, so maybe he thought I needed a visual since I was still trying to wrap my brain around my baby not having 4 symmetrical chambers, after all, I am a visual learner. What irony, and I couldn't help but stare at it. At that moment I immediately thought, I'm sure her unborn baby is healthy and just look at her...she's an unfit mother and just too young to be one. I don't know what her story was or how anything turned out for her and I never will. I do wonder why though, at that moment, she symbolized (or her tattoo rather did) the news that I had just received...my baby's anatomical heart was broken and mine was shattered. I was very angry and extremely judgemental of a little girl that I didn't even know and I'd probably never see again. I did refrain from glaring at her, although I remember she kept staring at me, probably wondering why I looked so horrible, mascara streaks all over my red face for I had just cried the very "ugly cry" and was still trying to get a grip. To this day, the image of that tattoo is stuck in my mind.

If you were to ask me what I envisioned the prognosis of the news of our baby's heart would bring a year ago, it would not have been this. Life is good. Yes, 2008 was a challenging year...but we did it! SHE DID IT!!! And Miss Maddie continues to beat the odds each and every day with her defected heart. That's what "having heart" is truly about. And since this blog is a journal of sorts, I thought I shouldn't refrain from sharing the ironic tattoo story. Plus, Maddie might find this funny to read someday. It is part of her heart journey, actually marking the beginning of it. I just hope it won't give her any big "body art" ideas when she's older...

Christmas

Early Christmas at my parents...

Great Grandma Shirley (Maddie's only living great grandparent)
Spiderman & Transformers, yeah!
Stewart grandkids with Nany and Ba
Christmas Eve at our house...
Grandma Nany & Maddie

Christmas morning...

Maddie's favorite was the candy canes!

Christmas Day at Grandma & Grandpa Allred's

Maddie & Grandma Allred

Cousin Jillian & Maddie (they're 6 weeks apart)

Auntie Lesa & Maddie bonded this Christmas

Jace & Mooms, Cade was napping and missed the photo

Our family get-togethers began on the 22nd and lasted until the 27th! We've been so low-key this year, it was a busy week! Luckily, everywhere we went is less than 10 miles from our home so we didn't have to travel with the bad weather and roads. Christmas was wonderful and watching the boys relish the "magic" was so fun. When Jace woke up on Christmas morning, he came into the living room and saw his gifts and stocking under the tree but didn't go over to it right away...he had to first see if Santa left any cookies and milk, his first words were "Yep, they're gone, Santa came!"

I was emotional this Christmas and just entirely grateful for His grace in our lives. Isn't it amazing that God sent His son to save us, as a sweet, helpless infant? What HOPE a baby brings, symbolizing new life and new beginnings. We know of this first hand. With each of our babies, our lives have become more enriched. But a whole new world opened up for us with Maddie, one we didn't even know existed, and I feel so blessed for this...what hope Maddie's life has brought to us all...that a baby can be born with only 1/2 of a functioning heart is a miracle in itself. Through this journey I have experienced the most heartache and the most joy I've ever known. But on Christmas, my heart went out to all of our heart friends and I couldn't help but feel some guilt that we were home spending the holidays with our healthy daughter and family while many of them were in hospitals or at home with empty arms, their baby was spending the first Christmas in heaven. This sure makes us keep perspective, knowing that life can change quickly and that we should relish every minute. Even though Maddie's heart can never be fixed, and it feels terminal at times, I wouldn't trade this. The blessings we've learned through her are immeasurable and life is much more amazing than ever before! This first Christmas with her will be one I'll forever cherish.

Perfection

A new world opened up for us when our Maddie was born. Our life is so much different than before and I am so glad of this. I see life now in an entirely different way... I have always tried to be "perfect". A perfect wife, perfect mom, have the perfect kids, etc, etc... It's one of many of my MAJOR flaws. But since January 2nd and finding out about Maddie's "not so perfect" heart, in fact, a majorly defected heart, life forever changed for me. Those months before her birth were excruciating. The wait, the worry, the uncertainty, the unknown was so difficult for me to bear. I had so many emotions and learned that life is not perfect and the one I'd dreamed of was not going to happen...a better one was in the making. Not my perfect plan but His perfect plan.

But until her unexpected arrival into this world (she was born 5 weeks early), I had a difficult time accepting this change in our life. I had the hardest time with the fact that my daughter, whom I dreamed about and wanted so badly, wasn't made perfect. The "perfect" family, now having my boys and finally a girl, wasn't how I'd envisioned it. That I, who strives so hard to be perfect and always do the right thing, was carrying a child that had a major problem. What did I do wrong? Why did God do this? How could He create a sweet, innocent child this way? What did I do to deserve this? Why would she have to live her life with only 1/2 a heart and have to endure so much? I asked this so many times. I questioned my faith, I questioned Him. I learned a bit about suffering. The perfect life I had dreamed of was no more- I had a daughter with a very serious health problem that would never be cured or fixed. Her future was and would always be uncertain, there would always be risks and obstacles and there was nothing I could do about it but accept it. I learned so much in those few months, especially that life changes quickly, it doesn't go as planned, and that we were given a tough hand. Hard to accept for a "perfect striving" person. But now experiencing all that I have and the new world that opened up for us, the "heart world," I have learned so much more about suffering, sacrifice and really living life to the fullest. LIFE is the furthest thing from perfect! Perfect doesn't exist in our eyes...but I have learned that God has made us perfect in His eyes. And Maddie's heart was created by a loving, awesome God. And that in itself is perfect.

I have read so many stories of other heart babies like Maddie. They share many similarities but they are all so different too...some are doing well and some really struggle. I have read too many stories lately of heart babies that have earned their wings. All of these children are single ventricle babies just like Maddie. Their hearts had enough and they gave a good fight. They fulfilled their purpose here on earth, even though it was untimely and in our eyes, not long enough. It is crushing and I truly ache for the mom's, heart moms like myself, who lost their sweet child and didn't get the time that I've been blessed with my daughter. A week ago, one of our little heart friends passed away. Her mom and I had emailed a few times as she anticipated the birth of her daughter. Baby Kaiya lived 2 weeks. She had the same 1st surgery as Maddie, was doing well, and it was a complete shock for me to read that she'd passed away. Their heartbreaking loss makes me realize just how lucky we've been. But one thing is true for all of these sweet babies...they have left a lasting impact in their short lives, have touched more hearts, and brought hope to this world. The blogs, websites and carepages I've read all have the same theme in common: GRATITUDE. As heart mom's, we are incredibly grateful for our "not so perfect" lives. We've sat by our child's bedside, helpless and afraid. Our baby's have had to endure and overcome so much and we know their struggle isn't over. But through this struggle, brings refinement...refinement for all of us. Through our heart child, we've grown. Maddie's taught us so much about what life really is about....and that's not perfection. We're so grateful to be chosen as her parents and we have a constant, daily reminder that life is so precious just by looking at our little sweet miracle: Maddie Grace.

A new life blossoms, and God smiles as His perfect plan begins again.

5 months old!

Happy 5 Months Maddie! Poor girl, for her birthday today, she had her 4 month immunizations, 5 of them in 3 pokes. Piece of cake for her...compared to what she's been through. She handled it like a champ, just crying a little. Her weight...get ready, she's 13 lbs 1 1/2 oz!!! She hasn't had much of an appetite lately and I've been trying new strategies with her feeds, so I was so nervous if she'd gained at all. She's now up to the 25th percentile for her height and weight! She's come a long way on the weight...from the 5th% at birth- she's more than doubled her weight!!! After Dr. Allred (Maddie's great uncle Lowell) listened to her, he said "her heart almost sounds normal!" The sound of her heart has "quieted" down a lot since the Glenn...not so much turbulance in there! Developmentally, she seems on track. She hasn't rolled over yet but is so close, kicking her leg over but hasn't figured out the rest yet. Her giggle is so cute and she constantly brings smiles to all of our faces. Loves holding her toys, her dress, mom's finger, whatever she can bite down and drool on. The little boys adore and gush over her every chance they get...it's a little bit of a competition between them. Our Maddie is back and is feeling so much better. She's got a lot more energy lately and seems so happy and content, 99% of the time!

These past months have really flown by and I've caught myself dreaming more about what Maddie's future holds for her. I used to not let myself even go there, it was too difficult to think about the "what if's" and uncertainties of the surgeries and procedures she had to go through in order to get here. She's doing so well that it feels good to talk about our future and all that we have to look forward to! A huge weight has been lifted now that she's 2/3 of the way there with her heart repair and since the next surgery won't be for a while (we cross our fingers), we can get on with LIFE again. What a wonderful feeling!

I count my blessings and YOU all are part of those blessings. I know that the prayers and love sent our way has made Maddie's outcome such a great one. I hope that she realizes someday how much she was loved and prayed for. God has been so good. Thank you for your continued support!

Reminders

We've been asked how we're doing and to tell the truth, it's gut wrenching at times. Tomorrow is gut wrenching. I find it very hard to swallow, especially the alternative, if Maddie doesn't have the surgery or if her heart doesn't like what it's about to endure tomorrow. It's hard to put your baby through this kind of ordeal. So I'm reminded of many things as I type away.

I'm reminded that she'll never remember any of this and I do find some solace in it. I'm reminded that her heart is working much too hard when I feel her little chest against mine, it must be getting tired of beating over time. I'm reminded that she is not as strong as she used to be when she can only finish an ounce of her bottle before tuckering out. I'm reminded that she should thrive after this surgery...she only weighs 12 lbs at 4 months right now. I'm reminded with her scar of all she has overcome in her little life. I'm reminded by her smile and sweet eyes of the dreams and plans I have for her. I'm reminded by this past week of her strong will and fight. I'm reminded, since coming home on March 31st, that we have been "gearing up" for tomorrow, the next step in her heart repair. I'm reminded by angel heart babies just how precious time is. I'm reminded that our Jesus has been with Maddie thus far and will be there tomorrow, holding her on that operating table, when I can't. I'm reminded that He loves her more than I can ever imagine or fathom. I'm reminded that He has answered so many of our prayers and I'm reminded that He's here and He's listening. Please join us in prayer for our baby girl tomorrow.

I'd like to share a beautiful poem written by another heart mom, Stephanie (mom to Braeden, HLHS). Again, I have to trust Him when handing her over tomorrow. I'm reminded to trust and know that this is out of my hands.

I pull out our suitcase,
It's time to pack.
I just can't believe,
that it's time to go back.
I wish we could run,
My feelings are mixed,
Just go someplace where..
there's no hearts to be fixed.
No more needles, no more taped cheeks,
Oh Lord we've been home,
but for just 16 weeks.
I know that's a blessing,
some have had less,
but I want more time,
I'm just nervous I guess.
Lord I have a question,
that only you know,
when they tap my shoulder,
because it's time to go..
When I straighten her blankie,
and I smooth down her hair,
Do you promise me Lord,
that you will be there?
When I trace her small hand,
and I kiss her forehead,
and I long to pretend,
that she's home in her bed,
Will you give me the strength,
that I need on that day?
If I give you my burdens
will you take them away?
I know it is true,
that we do what we must,
and that all I can do Lord,
is to give you my trust.