A Heart-y Valentine's Party

Lucile Packard hosted a Valentine's party for heart families and it was really nice. There was a jump house, games and awesome prizes. Talmage scored a new Mater and also Finn McMissile (which he calls Minn Miss Isle). We spent most of our time outside, trying to protect Evie from getting sick, but we came in at the end to grab a piece of pizza and say our hellos. I feel bad because Everett is the reason we even got to go to this event, and yet he never left his carseat and I had a blanket and a carseat-cover over him the entire time. If we can make it through the season without him getting really sick I will be really happy...and hopefully much less stressed. This was our first time leaving the house since surgery (besides doctors visits) and it will be the last for a while.

Tinkerbell and Jessie the cowgirl came to visit the kids and T was hilariously entertained. This is the kid who won't even sing heads, shoulders, knees and toes at our library story hour and he did absolutely everything they asked. He spinned in circles, he covered his eyes with his hands, and he even danced. DANCED. Halfway through the show, Tinkerbell rhetorically asked, "What do you see?" Talmage blurted out, "A lion!" When she did not respond he took matters into his own hands, ran to the front of the room and kept saying, "I see a wion. I see a wion." It was too cute to stop.

The four of us before we left. Everett is under that super cute carseat cover my sister made for me. Love it!

To all, happy Valentine's Day and happy CHD Awareness Week!!!

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Things you should know about a heart mom

Please read this blogpost written by a fellow heart mom. It's insightful and interesting and too true. I was shaking my head with agreement after every single bullet point. Either all heart moms are very similar, or me and author would be good friends in real life! Hope you like it as much as I do.

http://www.abbysperfectbrokenheart.net/?p=613

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Feeling the Love

“God does notice us, and he watches over us. But it is usually through another person that he meets our needs. Therefore, it is vital that we serve each other.” --President Spencer W. Kimball

{Amazing treats delivered to us at the hospital by my friend Comfort. Cupcakes + heart decoration = she knows me well!}

I've always considered myself an independent person by nature. The "I do it" attitude that began when I was just a baby has in some ways never left. At two it meant that I would wear my shoes on the wrong feet all day, solely because of the thrill the newfound control gave me. As an adult, it has translated into not asking or accepting help when in reality I am drowning in need because, "It may be miserable but gosh darn it I can do it myself!" The pride in that statement is embarassing, yes, but at times in my life (think before children humbled the heck out of me) it has fit me to a T.

The last few years, and especially during the past few months, my white flag has been raised numerous times and I've admitted that I just can't do everything by myself. I've learned that I can't pray and plead and beg for Heavenly Father to bless my life, help our family, bring me peace, etc. and then refuse all the assistance that is offered by my neighbors, family and friends. So I haven't. I have let others in to feel our pain, to cry with us and to serve us. Not only has my family been fed and my burden been lightened, but my spirit has been enriched. I know that God answers my prayers and He loves me because so many of YOU have been the answer I was seeking.

So to all of those that made us meals, brought us treats, watched our crazy T, prayed for us, thought of us, shared our story, visited us, offered help and more, thank you for making this season of our lives so full of LOVE. My heart is bursting at the seams with gratitude.

"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos into order, and confusion into clarity...It turns problems into gifts, failures into successes, the unexpected into perfect timing, and mistakes into important events. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow."
--Melodie Beattie

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If I could write your story, son

Another poem by the talented Stephanie Husted.

If I could write your story son
(Oh how I wish I could)
I'd pen for you a journey
That held nothing but the good.

Wouldn't it be perfect
If that job belonged to me?
I think I'd change a thing or two
While writing your story.

I'd write of lasting happiness,
The storms would stay at bay.
I'd write your story carefully,
I'd have so much to say.

You'd know not of a hospital
Or days in ICU.
You'd only know of simple things,
Like other children do.

The sun would rise...yes everyday...
And shine to make you smile.
You'd never know a day of pain
You'd never face a trial.

You'd dance to music all your own
While watching Sesame Street.
I'd tuck you into bed each night
And life would be complete.

I'd write of picnics in the park
And winters in the snow.
I'd write of laugher, joy and love.
I'd sit and watch you grow.

I'd proofread till my eyes grew tired
Each line and paragraph.
And let my pen fall to the floor,
Then stop to hear you laugh.

And never would I question
What sick children must face.
Never would I have a need
To ask God for his grace.

I'd likely live oblivious
Of what it means to be.
A member of this "special club"
I call my heart family.

If I could write your journey son,
Perhaps I'd not convey.
The message that HE longs to share
"We must live for today."

Your story has been written,
Each stroke penned with great care.
He knows each thought I have of you.
He's numbered every hair.

No I can't write your story son
Although I wish I could.
I must heed what HE says to me
"All things work for the good."

If I could write the life you'd live
I'd fail...don't you see?
I'll leave it in much better hands
He'll write it perfectly.

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Of Hospitals, Thanks and Chocolate Cupcakes

After having two babies wind up in the Newborn ICU (Utah Valley and Mercy San Juan), a prolonged visit to the Pediatric ICU for Everett's first surgery (UC Davis), a stay in the Cardiovascular ICU for the most recent heart surgery (Lucile Packard at Stanford) and dozens of visits to the heart center, labs and offices at all of those locations, you would think that I would absolutely hate the hospital. But that's not really the case.


A hospital is a sobering place--it's full of adults and children, each with a heavy load to bear. A hospital is a reverent place--a place where earthly goodbyes are uttered and eternal reunions occur. And a hospital is also an inspiring place--a place where miracles are performed and lives are saved.


Both of my boys lives were saved in hospitals, by doctors and nurses that have spent years studying and perfecting their trade so that they would know how to bless our family. Through all of the craziness that heart disease and the treatment can bring, I have allowed myself the joy of being truly and completely grateful for all that hospitals have to offer. I respect them, I feel safe in them and I'm grateful for them.


Do I want my baby to be in the hospital? No. But that's not because I don't like them, it's frankly because I don't want my baby to be sick. But if my baby is really sick, there is no place I'd rather be than a good hospital with a good doctor and good nurses. And luckily, we've landed in those hands many times.

Our new cardiologist, Dr. Punn, is a total gem. When we were close to being discharged from the hospital I was feeling nervous and overwhelmed. Everett was being sent home much sooner than I had expected, and call me crazy but I wasn't sure if I was ready, or able, to provide him the around the clock care he needed. Dr. Punn walked into Everett's hospital room (purely for a pleasure visit, might I add) right as the bandage was coming off of Everett's chest for the first time. Seeing Evie's scar was all it took to start the tears flowing. This was only my third time seeing Dr. Punn (the first when we were told Evie needed another surgery, the second at our pre-op appointment) and I had cried every single time. He got me tissue and kept reassuring me that our baby was beautiful, that he was recovering well and that we all would be ok. He has young children, his youngest is the same age as Everett, so I feel like he talks to me with the knowledge and expertise of a doctor, but also with the empathy and concern of a fellow parent. When we visited the heart center a few days ago I vowed I would not cry! And Dr. Punn, he was just as charming as ever. Upon entering the room he immediately scooped Everett in his arms and started talking to him. I gave him a big plate of cupcakes just for him, but as delicious as they were I still don't think we're even. I imagine I will always feel a large debt of gratitude to him and our other wonderful doctors.

To say thank you to the wonderful doctors, nurses and staff at Lucile Packard who took such great care of Evie, and in honor of CHD Awareness week, we made dozens and dozens of cupcakes (triple chocolate, peanut butter and vanilla/vanilla) and delivered them to the CVICU and the floor after our appointments. It was nice to see everyone again, and I think they enjoyed seeing us too...

...and with a delivery boy like this can you blame them? Forget about the cupcakes, most of the doctors and nurses that saw Evie again wanted to eat him up! He gave everyone his signature grin and loved his wagon ride. I was pretty generous in my cupcake delivery that day, but I can honestly say that I saved the sweetest sweet for myself--and just might have nibbled on him all afternoon!

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A Mother's Perspective

The poem below was not written by me, but I wish it was. I related to every single word, and tear up with every reading. It's truly what being a heart mom is all about.

What is a CHD? A Mother's Perspective.

By Stephanie Husted (fellow heart mom)

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked"What's a CHD?"

I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix Aspirin Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.

It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held him, I'd waited so long,
It's knowing that I need to help him grow strong.

It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.

It's caths, x-rays and boo boos to kiss
It's normalacy that I sometimes miss.
It's asking do his nails look blue?
It's cringing inside at what he's been through.

It's dozens of call to his pediatrician
She knows me by name, I'm a mom on a mission!
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.

It's watching him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over I'm still not prepared,
It's knowing that his heart must be repaired.

It's waiting for news on that long stressful day,
It's praying...it's hoping...that he'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.

It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching him chasing a small butterfly,
It's the moment I realized I've stopped asking why.

It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little boy who loves Thomas the train,
Or a special heart bear or a frog in the rain.

It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.

And no, we'll never be the same.

This is...a CHD.

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Everett's story--the diagnosis

{portrait by AshMae, see below for details or click on the picture}

I remember vividly the moment I learned Everett had congenital heart disease. The previous night had been sleepless, and Everett's eating and activity had continued to diminish. He was 36 hours old. I was pleading for help, but our nurse told me I was overreacting. "There is absolutely nothing wrong with your son," she said, but as much as I wished she was right I knew it was not true. Every person who walked into our small hospital room heard my plea, and finally an incredible doctor trusted my instinct, and thinking he just had an eating problem had a lactation specialist come to my room. She noticed that Everett was having difficulty breathing, and sent him to the nursery for an evaluation.

What she guessed was some kind of an infection, turned out to be Congenital Heart Disease. By the time the NICU doctor walked back into our room to draw a diagram of the heart and break the news, little Evie was barely hanging onto life and was being prepared for transport to UC Davis for recovery and surgery. My immediate question to the doctor was, "Can I hold my baby one last time before he is transported." I have seen that doctor's face in my mind over and over again as I ponder the events of that day. It's as if her eyes were saying the words she couldn't say, "You poor, innocent girl. You have no idea what's going on. You have no idea how bad it is." And I didn't. I had no idea how serious it was. Severe coarctation of the aorta, a VSD, transverse arch--his diagnosis was still just pictures in our doctors notepad to me. She kindly said that the NICU team was working hard to prepare him, but that James could go be by his side while they worked.

I thank God everyday for helping me be in tune to Evie's needs and giving me the courage to fight for my son's life. I also thank Him for sending inspired people who chose to listen to me, his mother, who had nothing but a mother's instinct to back her claim. We were so close to losing him that day.

After the diagnosis was made, there was a rush of activity. Grandparents were cleaning, making phone calls and researching Everett's condition. I was still recovering from a c-section and had yet to leave my bed alone, but I knew that I had to get up. The reality of our situation was slowly setting in and I felt like I was literally going to blow up. I HAD to be with my baby. Before anyone knew it I was up and out the door. Hobbling like a 90-year-old woman, yes, but I was going to see my baby before he left that hospital.

I made it half way down the hall when my eyes met my mother's. She had left the room to call my dad, and immediately got off the phone when she saw me coming (maybe for fear that I would fall over in my 90-year-old-woman state!) I instantly fell apart, reverting back to being her baby girl as I longed for my baby boy. I have never been so raw in my life, in fact, it's the closest thing to an out-of-body experience I have had. I was sobbing. I was hitting the walls and I was screaming, "Let me see my baby. I need to see my baby." My memory of that experience is all a little fuzzy, but one thing that has remained vividly, and nearly tangibly clear, is the love I felt for my Everett. I loved him so much that it hurt. Some things never change.

My mom was understanding, loving, empathetic and strong. She let me lean on her--both physically and mentally--and she helped me find the NICU and my baby boy. I'm so grateful she was there.

The NICU was filled with throngs of people trying to save Everett's life. I could barely see him through the masses, but as always he looked beautiful and at peace. Before I knew it, I was on the phone with our cardiologist who helped me understand more about Everett's condition. The only thing I remember about that conversation was asking him, in between sobs, how and why our baby boy was born with a broken heart. I thought I had done everything right. I religiously took my prenatals, I didn't drink, or smoke, or even drink caffeine. I had never heard of Congenital Heart Disease, but instantly assumed that this was something I had done to my child. Guilt flooded my body. I begged for clarity, and the doctor eased my anxiety. He told me that Everett's heart defect was present before I even knew I was pregnant with him (probably in the first 40 days of pregnancy), and was not caused by anything I had done. It was then that I learned that congenital heart disease is considered to be the most common birth defect, effecting approximately 1 in 100 children.

It's amazing how you go from never knowing something exists, to having it be the center of your world. I have spent the last seven months reading books, blogs and articles about heart disease, children with different defects and our specific conditions. It has become a passion and an obsession. And it's also become very normal. We've accepted and embraced our roles as members of the heart family. We feel safe there.

If I could have three heart wishes, my first would be that congenital heart disease didn't exist at all--that all babies were born with amazingly well-functioning hearts and lived happily ever after. You gotta wish big, right? If that couldn't happen, my second wish would be that no baby ever died from congenital heart disease. I would wish with all my might that the research, technology, surgery, etc. was so advanced that no sweet heart baby would have to leave their mothers arms. I ache for them, and I ache with them. Since that is still not possible, my third wish (and the one I'm working to make my reality) is that people become aware of congenital heart disease. My wish is for parents and family members of future heart babies to know they are in a community of people who love them. My wish is for people to be so moved and affected by the stories of my little guy, and the countless other heart children, that they donate all they can to help the CHD battle. And maybe when my third wish is accomplished, my second will soon follow. And maybe, eventually, my first wish will be granted.

Oh what a day that will be.

**The gorgeous portrait of Everett was done by my talented and amazing friend Ashley Mae. Everytime I look at that scar down his chest I remember how blessed we are. She has agreed to sell prints of that portrait for $10 and donate the proceeds to Congenital Heart Disease research. I love Ashley's work on this piece because that baby could be anyone with a CHD--my baby or yours. I can't wait to get the hard copy and put it up in my house. Here is the link to the print: http://www.etsy.com/listing/92584209/congenital-heart-disease-awareness Enjoy!

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