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.

I pray

I pray that no other parent shall have to hear those words "Congenital Heart Defect"

I pray that no other parent is given the choice to terminate their pregnancy or has to chose the "comfort care" method by bringing their newborn baby home to die because of a complex CHD

I pray that no other parent shall have to sacrifice time with their "healthy" child because you can't be in 2 places at once

I pray that no other parent has to see their child eat with a tube because just sucking a bottle makes them tired and sick

I pray that no other parent has to make the decision to have their child's chest cracked open and heart stopped

I pray that no other parent has to endure the torture of seeing their child cry her eyes out, yet not hear a sound

I pray that no other parent shall have to get instructions on how to hold their child - this should be instinct

I pray that no other parent is at the mercy of waiting for another child to pass away, because this is their child's only chance of living

I pray that no other parent has an empty crib waiting for it's owner to come home from the hospital, if at all

I pray that no other child should have to go through all this pain, yet still lose their fight in the end

I pray for hope

I pray for awareness

I pray for research

I pray for a cure

Today is Congenital Heart Defects Awareness Day...as you love and hug the sweet valentines in your life, please say a prayer for those born with a broken heart.

("I pray" was taken from Heart Mama's facebook group.)

calendar girls!

I love, I love, I love my calendar girl
Yeah, sweet calendar girl
I love, I love, I love my calendar girl
Each and every day of the year!
(February) You're my little valentine...

Maddie & Teagan were featured in a calendar benefitting Seattle Children's, created by the Harvest Ball Guild in Tri-Cities. These two are the cover of the calendar as well as the month of February...fitting for two very special 'sweet' hearts.

Yesterday, we spent the afternoon with Teagan and her family. How we love our time with them. We spent the day eating noodles, playing at a playground in beautiful weather, shopping, and just enjoying our time together. As I've said many times before, the girls are very cute together and because of their friendship, another one has really bloomed over the past couple of years: Caden & Gavin are buddies. These boys are only a couple of weeks apart in age and have a lot in common. They have just as much fun as their sisters and between all four of these kids, there were many tears and sad faces when we said our goodbyes at Hobby Lobby. Simply said, we love the Maxwell's!

Something the Lord Made

If you haven't seen this movie, you need to. It shows how far congential heart surgery has come and is just a wonderful story if you're connected to CHD or not!

loss and gain

I wrote this post back on January 9th, 2011...I will finally post it, in honor of lessons learned from raising a child with CHD.

I'm having one of those days today. After visiting our cousin's brand-new, precious baby boy in the hospital yesterday, I'm feeling sad...because he was born with a CHD. He's doing very well and will hopefully come home soon. We pray he will not need surgery and the hole in his heart (VSD) will close on its own. We're thankful he's doing great and so are his parents. We love them and their worry is close to our hearts.

Being back in a NICU brought many memories back that I'd rather forget. I don't think I dealt with many of my emotions while at the hospital or really even after coming home with our precious baby girl. We had so much on our minds and didn't have time to really "go back" on what we'd just been through. There were hoops to still jump through with her, surgeries to be accomplished, weight to be gained, milestones to reach, and so I didn't want to think back. And life carried on.

So on a day like today, I've given myself permission for just a bit this morning to feel sorry for what I missed with her birth. Not being awake when she was born, getting to only spend 2 hours with her in her first 48 hours of life, holding her only a handful of times that first month of her life, not being able to nurse her because she'd get too tired, not being able to bond like I'd wanted to with our baby, being absent from our boys life, ages 4 and 2 at the time...they needed me and I needed them. Living in a hospital, not knowing how in the world this all can be done. All of this is not ideal when you have a baby and simply not fair but in our case, in Maddie's case, was necessary for her to live. For her to be with us now. And we did it.

I guess this is why we don't take anything for granted with her. Each day that Maddie wakes up, staggers into our room, sucking her thumb or like this morning, smacking a big wad of pink bubble gum, I'm so grateful. Yes, we've been through more than most young parents, but every second of worry, fear and sadness has been worth it. I'd do it all again and again and again to have her on this earth. This little girl is so worth it. She's here and this is what I will chose to focus on today, not what I lost. Because so much more has been gained in our lives because of our Maddie girl. We look at life differently...and this is the best part. We can only thank her for teaching us this.

the force is with CHD!

People living with CHD are all around us... it's really an invisible disease. There are an estimated 1.8 million Americans living with CHD today. That 1 in 100 statistic sure adds up! It's awesome there are this many survivors, living with varying defects. Maddie's specific diagnosis is only about 6% of the 1 in 100's born with CHD. It's rare.

Here's a cool story of the cute little Darth Vader guy from my favorite Superbowl commercial this year. He's been featured in the news, The Today Show, and CHD is really getting some airtime! Click here to read the story of this heart baby survivor!

the promise of stem cell therapy

These photomicrograph cardiac stem cells isolated from a mouse

This article helps explain why we're passionate about CHD research! We remain hopeful. On to the article...

Stem cells show promise in repairing a child's heart

Visionaries in the field of cardiac therapeutics have long looked to the future when a damaged heart could be rebuilt or repaired by using one's own heart cells. A study published in the February issue of Circulation, a scientific journal of the American Heart Association, shows that heart stem cells from children with congenital heart disease were able to rebuild the damaged heart in the laboratory.

Sunjay Kaushal, MD, PhD, surgeon in the Division of Cardiovascular Thoracic Surgery at Children's Memorial Hospital and assistant professor of surgery at Northwestern University Feinberg School of Medicine, who headed the study, believes these results show great promise for the growing number of children with congenital heart problems. With this potential therapy option these children may avoid the need for a heart transplant.

"Due to the advances in surgical and medical therapies, many children born with cardiomyopathy or other congenital heart defects are living longer but may eventually succumb to heart failure," said Kaushal. "This project has generated important pre-clinical laboratory data showing that we may be able to use the patient's own heart stem cells to rebuild their hearts, allowing these children to potentially live longer and have more productive lives."

Cells were obtained from patients ranging in age from a few days after birth to 13 years who were undergoing routine congenital cardiac surgery. Findings show that the number of heart stem cells was greatest in neonates and then rapidly decreased with age, and that the highest numbers of these stem cells are located in the upper right chamber of the heart, or the right atrium. The study also showed that the cardiac stem cells are functional and have the potential for use in repairing the damaged heart. Up until now, heart stem cell studies have addressed the adult diseased heart, but this is the first and largest systematic study to focus on children.

"Heart disease in children is different than heart disease in adults," said Kaushal. "Whereas adults might suffer heart failure from coronary artery disease or atherosclerosis, heart failure in children primarily occurs because they acquire cardiomyopathy or have a congenital condition in which the heart chambers are small or in the wrong position causing the heart to pump inefficiently. The potential of cardiac stem cell therapy for children is truly exciting," said Kaushal. Pending FDA approval, Kaushal hopes to begin clinical trials with children in the fall.

###

The study was funded by grants from the National Institutes of Health, the Thoracic Surgical Foundation for Research and Education, the Children's Heart Foundation and the North Suburban Medical Research Junior Board.

To access the article on line go to: http://circ.ahajournals.org/cgi/reprint/CIRCULATIONAHA.110.971622v1?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=Mishra&searchid=1&FIRSTINDEX=0&resourcetype=HWCIT
Children's Memorial Hospital is one of the top pediatric hospitals in the country according to U.S. News & World Report. It is the pediatric training hospital for Northwestern University Feinberg School of Medicine.

Contact: Julie Pesch
jpesch@childrensmemorial.org
773-880-3055
Children's Memorial Hospital

January 27,2011 (article retreived from Little Hearts. Org)

Build-A-Bear Workshop supports CHD!

Today kicks off CHD Awareness Week Feb. 7-14th! I'm hoping to post something relevant to CHD (Congenital Heart Defects) each day this week like I have in the past. Click here or here read those posts.

The night before Maddie's cath, we went to Build-A-Bear Workshop, thinking this would be a fun activity for her and creating something she could hold and cuddle in pre-op and during recovery would help ease the whole cath experience. I felt compelled, because this month only, Build-A-Bear is asking for a $1.00 donation at check-out to support Children's Heart Foundation! This is the largest foundation raising money towards CHD research. Maddie hadn't had a build-a-bear experience and we couldn't pass it up.

It seems that we are always being asked "would you like to donate towards_______?" at checkout lines, having to press Yes or No on the keypad. I've never been asked to support research for CHD...usually it's cancer or premature babies. But CHD is getting some awareness now and at a place created for children no less! $1.00 may not seem like much, but it's something and when your child's future depends on critical, life-saving research, every penny counts. I was thrilled to see CHD getting some attention...afterall, Congenital heart defects are the #1 birth defect. Nearly 1 in 100 babies is born with a CHD in the US.

So in "true Maddie fashion", she created a very cute teddy bear covered in hearts, with an added thumping heartbeat and pink, glittery, frilly dress. She named it "Tee-Dee" and was in heaven during her bear building experience! I highly recommend it :)
making a wish for her bear getting Tee-Dee all washed up!
helping create Tee-Dee's birth certificate
hugging Tee-Dee in pre-op before her cath last Friday

Go here to check it out! Thank you Build-A-Bear for helping spread awareness of little broken hearts!

a great pre-fontan cath!

Waiting in pre-op for a 1:45 minutes...she was a very good girl. Once in a while, her tummy would growl and she'd ask, "what's that?" She's never remembered being hungry since I'm always trying to get calories in her!
Maddie sporting the hospital gown, she liked Tweety Bird she told me but not the gown. Her first tears came when we told her she had to wear it. I think she realized what was happening at this point but was happy and cheerful prior to this and through all of the exam, measurements and nurses/docs questions & consent forms! And once she had the versed, our babe relaxed and smiles just covered this sweet face.

Munching away on snacks in post-op. Dora the Explorer saved us here. She enjoyed watching Dora while having her post-op echo, eating jello, graham crackers, a popcicle and fishy crackers as well as two cups of apple juice. She was starving! Not eating after dessert the night before and no drinks after 6 am poses a bit of a challenge for a 2 year old! And for you heart mom's...watered down Country Time Lemonade can pose a problem as a "clear" fluid. Note to self: stick to the list of drinks your child can have pre-op!

We're waiting in recovery right now, one more hour to go before they'll let us drive home. Maddie's cath went really well: no tune-ups necessary, low pressures (which is what we wanted to learn) and it looks like she's ready for the Fontan. We'll know for sure after Dr.Chun presents her and discusses this with her surgeon.

We were pleased with Dr. Johnston's report--her PA's have remained opened and look good! She has a collateral that could have used a coil but because of its location, he decided not to risk putting one in. (It's from her SVC to her IVC, called an AVM vessel?) With the change in circulation after her Fontan, it shouldn't receive blood flow and won't pose a problem down the road without getting blood flow to it. He was able to access the catheter through her right groin and her neck. Two more teeny scars to add to her existing ones.

We had a good day- she was able to get Versed before going back (although I spilt half of it giving it to her) and I was able to go back with her when she was put under. She chose "strawberry" gas and kept giggling as the nurse was covering her mouth with the mask. After the cath, she was a bit unruly in recovery so I was paged to go back with her. The entire procedure took just under 2 hours. We had our favorite anesthesiologist, Dr. Eisses, and we got to see our favorite echo sonographer, Ray!- we had a great visit with her and she was able to get wonderful pictures of Maddie's heart. Plus Dr. Chun came by to see us and discuss the results. He mentioned that her PA's look great--almost as if they've been untouched! Seems like we're all at ease and on the same page of when the timing is best for her Fontan. We do feel fortunate to have such a great team here at Children's and so many love our Maddie in this place. Thank you for your prayers today and checking in on Miss Mooms!

do the (clap, clap) potty dance!!!

Yes, it's true! Someone is wearing princess panties and using the toilet now (thanks to Grandma Allred for jumpstarting the process!) We're impressed. Maddie was more ready than I gave her credit for. She's caught on very quickly and so proud of herself. We are too. Our baby is growing up!