*there's Congenital Heart Defect Awareness week 2014

I can't imagine that anyone would want to see this super detailed video unless you REALLY want to understand the details of heart defects. I'm saving it here in case Will or someone else in our family wants to see it in the future. Maybe he will write a paper on TOF someday for school. :)

http://vimeo.com/86454524

*there's his annual check up

Will had a visit with his cardiologist Dr. Johns this week. It included an echo and EKG. He happily watched Toy Story during the echo and was such a big boy during the ekg. He was still as he could be and actually managed it a little better than getting his blood pressure checked. That one had to be done a second time and he got understandably tired of having his arm squeezed. He did protest so much about having the EKG stickers removed that we just left them on awhile. I don't remember them checking his sats. If they did the number must have been fine because he got a great report. The doctor said they can't see or hear anything new or concerning.

The 2 main recurrent points in these appointments are: energy levels and the health of his teeth. The doctor said Will's heart functions close enough to normal that he doesn't expect him to have trouble with his stamina and energy. On the other hand, the structure of the inside of his heart is still different enough that a gum infection could affect the lining of his heart differently and have a larger impact than a gum infection in a person with a typical heart. Will recently had his 2nd visit with the dentist and things look good in that department. Getting a 3 year old to cooperate with brushing his teeth is another story, but we're getting there. 

Our sculpture photo shoot was crowded this year! The bored guys at the valet stand just make this year's pictures special don't you think?

*there's a quick catch up

So many things I am behind on posting about...his birthday, Christmas 2012, his graduation from Special Kids. He's even had some "firsts" like his first trip to the dentist and his first Dairy Queen ice cream. I will get to those posts this summer. At least I hope!

I am checking in today because tomorrow is Will's 3rd annual surgiversary! I was looking at his scar last night and thinking about how simple and small it is and how it can barely convey everything it symbolizes. His life is normal now (whatever that means) and he doesn't have a clue what he has survived.

I'm going to look for some heart shaped balloons to celebrate. You might remember that he used to have a fear of balloons but now they are one of his favorite ways to be entertained! He won't know or care what the occasion is, and that is perfectly fine. :)

*there's a great story

I haven't blogged much lately. Not much is going on. Will is doing really well! We haven't been to see a doctor for him in over a month. I noticed that happened last August too. He has had some trouble with allergies but that is fairly normal for us. 

I am writing today to share this story. I have read stories of people with TOF that are quite a bit older and they are encouraging...but they also described a lot of trouble with their health, not being able to keep up with their friends, not being able to play sports, etc. I'm so glad those people are willing to share their encouragement, because the moral is that their lives have ended up great. There's also the example of Olympian Shaun White...but he is a little larger than life and his story seems too good to be true. So that is why I'm so glad to have seen this one:  

I'm 29 and Dr. Pacifico repaired my textbook ToF at 14 months old. Life has been full and unrestricted. I've had both normal pregnancy and been "allowed" to adopt while others with different medical conditions are sometimes not allowed to do so. We plan to both get pregnant and adopt again. I ran my first half marathon in February. While I was slow based on how much training I did, I finished in the top 80% and was proud to say I am now a runner!

I'll undergo my second surgery ever sometime in the next year to several years to replace my useless pulmonary valve. That surgery is expected to be nothing but an upgrade on future quality of life... a good news surgery.

I was always pretty vain -- into fashion and looks growing up -- yet my scar never bothered me a bit. From a tiny age, my mom sold it to me as a mark of gratitude for life, and I bought into that. Truthfully, I wouldn't lose the scar if I could! (And as a baby after surgery, I fell on the rung of a rocking chair and mangled my healing sternum, so the shape of my chest bone is disfigured. I'm even mostly okay with that.)

I just want to encourage you all. I can't imagine being the parent wondering how life will go for my child. From my perspective as a child/now adult living with ToF, heart issues have been an afterthought... nothing but a reason to be thankful for a body that works.

-R

(Hearing from a 29 year old means she probably got a repair that resembles what Will had. The older TOFers mostly had a repair called the BT Shunt.)

I have been in the middle of a week-long sigh of relief after reading this. :)

*there's 2 years

Today is Will's 2nd open heart surgiversary! 

Our celebratory cookies are A-dorable!

more pics to come...right before I could load the picture of all the cookies together I suddenly ran out of memory and didn't even know that was a thing that could happen

Scar check:

2 weeks post-op

2 years post-op

Since the poem below is long I wanted to make sure I highlighted at least part of it:
You already have quite a story,
Which you can someday share,
And I can see it's beauty,
Behind that scar you wear.

BEHIND YOUR SCAR
Sometimes I have those "moments",
When I think...life's just... not fair,
Then I think of all you've been through,
And I see the scar you bear.

A faded line right down your chest,
Made with such careful precision,
We wanted you to have a chance,
Could there be any other decision?

And so I trace that "perfect" scar,
Made with the utmost care,
And I realize there is purpose,
Behind this scar you wear.

What have you taught us?
You've taught us how to face a storm,
(Some things are just out of our hands)
Life has no handy guidebook,
(Things don't always go as you've planned)

People come into our lives,
(Sometimes it is just for a season)
But God brings them into our lives,
(And I know that He must have a reason)

Normal, uneventful days,
(The kind that we always hoped for)
These are the days I say, "Wow God",
We just never know what lies in store.

If I can place a feeding tube,
Without even getting distraught,
Perhaps, maybe, I might be...
Much stronger than I thought.

It's okay to be afraid,
And it's alright to cry,
It's okay to feel lost sometimes,
It's even okay to ask...why?

You face life with courage,
(Knowing God set you apart)
Every little thing you do,
You do with all of your heart.

No crystal ball exists for us,
(To see us through each strife)
We only have one wish for you...
An ordinary life.

You've taught us to love one another,
(Helping each other to cope)
You've taught us compassion for others,
You've taught us to never lose hope.

You already have quite a story,
Which you can someday share,
And I can see it's beauty,
Behind that scar you wear.

~Stephanie Husted

 

A book dedicated to helping children see the beauty of their scars.

*there's a GREAT report!

Last week Will saw his cardiologist.
The echo was first. He did really well with the help of some good entertainment.

Choosing his next show on the Ipad.

The sonographer pointed to the Ipad when we were done and said "That was a miracle".

Next was length, weight, and EKG. I couldn't get pictures of that because Will needed all of my attention. He tends to cry about having to lie down to get weighed. Luckily he is getting big enough that most offices let him stand on the big kid scale.

He cried a lot through the EKG. I think having 15 leads stuck to your chest is scary. Luckily it is quick, doesn't really hurt, but just looks odd. I wish I had a picture for him to look at in the future. That way he can see that he has survived them before.

Here is another tough heart kid getting his EKG at Vanderbilt:

While Will struggled through his EKG (imagine the above but with a lot of squirming) his foot caught some of the wires and he pulled half the leads off all at once. That made it last about 2 minutes instead of 1.

Then we waited for a long time while the doctor looked over all of the results. An hour and a half into the appointment Will looked down at his chest, then at me and said "Oh shurt!". Translation: I just realized I haven't been wearing a shirt all this time. What is going on??

The report from Dr. Johns. "I couldn't be happier with what I saw". Will's echo is unchanged from the last one. His narrow pulmonary artery (see PA stenosis below) has not had any additional narrowing. This is the major thing we will be watching for Will's entire life. I refer to it as "his valve". His is one of the better TOF pulmonary arteries out there, but it could give out at some point because it works harder than the valves of most of us. They also continue to watch the hole that was closed between 2 of the heart chambers (called a VSD - ventricular septal defect). When they patched it a tiny gap remained on one side. Just something to watch.

At every appointment I learn something new. New thing #1 was about Will's activity level. It started with the usual question about us seeing any color changes. My answer is always the same: He occasionally turns blue around the mouth, hands, and feet when he gets cold. Usually at the end of a bath. They nod and confirm that is normal for TOF. They also ask about his activity level.

Is he as active as he always was?

Can he keep up with other kids?

Do you have any concerns about how much energy he has?

I always say his activity level is really good. This time I asked if a change in that department will be a sign that his heart function is deteriorating. The answer was no, they just ask about it to get a sense of who he is.

That is unnerving to me. I prefer symptoms. Symptoms are an outward sign that something needs help. I like the echo and ekg tests to confirm that his heart is as good as it can be...but I really prefer symptoms as a warning first. Now maybe it is clear why this appointment is such a big deal in our lives. We never know if we are going to get surprised with bad news.

This leads me to the MRI. I learned from other heart moms that MRIs can give the most accurate view of heart structure.

photo courtesy of How Stuff Works

Dr. Johns says Will's MRIs will start around ages 10-12 and he will get them every few years after that. They require sedation so they don't do them often unless they have a reason. Since there are no other signs that tell them to look harder at Will's heart right now it can wait. I am fine with waiting but that will probably be a nerve wracking day. Note to self: find a video of someone getting an MRI to show Will before his first one.

New thing #2: Dr. Johns said Will will probably have some sort of pain in his chest in the future. He said that their office has 15-20 teens come in per week with non-dangerous chest pain. This is due to the chest wall being cut during open heart surgery... once it's been cut it is affected forever. It is just going to produce some kind of pain at various times.

Lastly, the doctor said he would be "amazed" if Will needed any more repairs in the next 10 years. And he "probably" won't need anything fixed in the next 10-20 years "if ever". Great news!

Other fun facts about the 2012 cardiology appointment:

He didn't have to have an Xray!

His pulse ox was 99!

If the appointment in 2013 goes this well Dr. Johns says he may recommend that Will not return for 18 months or even 2 years!

More photos to come!

*there's proof that he'll get to be an old man

Happy Valentine's Day! 

This is also the last day of Congenital Heart Defect Awareness Week. I wanted to use today to make everyone aware of how precious life is.

Most parents have examples of what their childrens' lives will look like when they grow up. Mothers like me have to search for those examples.

Found them!

Janet, TOF, shown at age 68!

Only 10% of infants with unrepaired TOF are likely to survive past age 21.  Luckily more and more kids have access to surgery to get their repairs. I'm so glad there is an association for adults with CHDs to give me a central place for information about what to expect for Will's life. These people are showing us the way.


“Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.” -Melonie Stothers

Congenital Heart Defect Awareness Week 2012 

*there's his surgiversary

Or is it his heartaversary?

I think every day is a heartaversary so we will go with the other name.

Sometimes I write blog posts ahead of time and save them to publish later. I wrote one for Will's surgiversary months ago that sounded fairly sad. I think some grief is to be expected. But it hit me one day that this was a time to celebrate!

So then what? A party wasn't really practical. But we COULD share a yummy dessert with some friends! Taking full advantage of an excuse to eat something really bad for me, I became pretty obsessed with the idea of getting heart shaped red velvet whoopie pies. (Still a genius idea if you ask me.) But that proved to be too difficult since our local bakery had never heard of them. I'm keeping that as a goal for the future.

image of ingeniousness courtesy of cambrookefoods.com

We ended up with these delicious cuties:

 

 

Now for the original post.
This time last year we were taking videos of Will in his hospital room. Just in case it was our last time with him. Hoping for the best and preparing for the worst.

 

When surgery was over, we didn't want people gawking at pictures of Will not looking his best. If it is possible to look perfect and awful at the same time, he did. I asked other heart moms if they showed anyone pictures of their child after surgery. I got all kinds of responses: some never did, some did but people got upset with them, and some didn't think it was a big deal at all. Now that we know he is all fixed up, it seems like the time to share our pictures. Don't look at them if you prefer.

 

A few days after surgery (minus some tubes) when the fluid was at its worst.

I hope that comparing those pictures with the one below will help us remember that there is hope when life seems bleak.

Will at age 1

I don't get queasy in hospitals and I can usually handle medical stuff. We were shown pictures of what to expect right after surgery. I think that helped it not be such a shock.When we got to see him after surgery in his PCCU room, the nurse explained all of the equipment and medicines and I was fine until she said "This is the chest tube" and my eyes followed it to the floor. Chest tubes drain excess fluid out of the body. It went from the middle of his tummy all the way to the floor into a box to measure what collects there. At that point my knees got weak and I had to sit down. I've never experienced anything like that before or since. It wasn't because it was gross, but I think it must have been a symbol of how fragile he was. It didn't help that my mind magnified it to the point that I was imagining it much larger than its actual size. That tube was my least favorite thing about the PCCU.

Will's surgery day was memorable and life changing. We hope he never has to do that again.

To my son,
I write this as I wonder,
Will you ask someday?
Why do I have this scar mom?
Did God make me this way?
What will happen to me?
What does my future hold?
Will I hold my own children?
Then live until I’m old?
I think about your future,
Imagining what lies ahead,
Perhaps I need to concentrate,
On present things instead.
The present:
Right now you are enjoying life,
A typical mischievous boy,
You make us laugh…yes everyday,
And fill our hearts with joy.
And people often ask me,
So he’s all better right?
His heart is fixed, he seems just fine,
His future’s looking bright.
Yes, “He’s doing well”, I say,
I hope things stay this way,
I still fear for his future,
And every night I pray…
“Give me yet another day,
Keep my child strong,
I do not want to lose him Lord,
Please let his life be long.
Thank you…
Thank you Lord, for showing me,
What just one child can do,
I marvel at his courage,
And the trials he’s been through,
Thanks for your compassion
(And need I say it?…grace)
You’ve led me through each valley,
And you’ve brought me to this place.
A place where I’m not angry,
And it’s easier to see,
That I was not the person,
That you wanted me to be.
Thank you for the trials Lord,
They’ve taught me how to give,
Thank you for my child Lord,
He’s shown me how to live.
Did God make you this way?
I’ve asked myself this question,
A thousand times before,
Then it became a question that,
I just could not ignore.
God, He made you perfect,
Bestowing you with gifts to share,
God made you with his own hands,
Then numbered every hair.
He saw no imperfection,
Or heart…all rearranged,
He saw you…his well loved child,
And then he saw…lives changed.
The future…
The future is no place to live,
And neither is the past,
The present should be cherished,
As it truly goes too fast,
I don’t know what your future holds,
Or what we’ll have to face,
I know who holds us through each storm,
I know we lean on grace.
I know that life’s not always fair,
I know God has a plan,
I know He gives us strength and hope,
I know, he says…”You can”.
I write this as I wonder,
Will you ask me why?
Will you someday understand,
Just why we had to try?
Know, how very much your loved,
(Through every storm and strife)
Know, I wanted you to have,
A chance… to live your life.
~ by Stephanie Husted

One last thing...a major part of Will's OHS was the closing of a hole between two heart chambers. To listen to what a heartbeat with a VSD sounds like before repair, go to this link. Scroll to the bottom and click on Ventricular Septal Defect. Not the typical thump-thump pause thump-thump we're used to is it?

*there's Inspiring Hearts

It is hard to find personal stories about adults with CHDs. I am most interested in the ones with TOF of course. I'm happy to share that I found this:

The blog Inspiring Hearts is by an adult with a CHD. She has included interviews with other adults with heart defects, including TOF. If you click this link it will take you to the 3 interviews of adults who have TOF.

Thanks so much for sharing those stories with us, Teri!



From a medical viewpoint, those 'inspiring hearts' are living longer and longer and the medical community is having to catch up. There are many cardiologists for adults with acquired heart diseases, but most that work with congenital heart defects specialize in pediatrics. That means there is a whole new field emerging since these patients did not survive to adulthood in the large numbers they do now. This article addresses this and some other challenges of long term CHD treatment: From 'Blue Babies' to Healthy Adults.


And finally, this blog that I've talked about before did a really nice post on adults with CHDs for CHD Awareness Week. The common theme I noticed was that many of them advise against being overprotective parents. Click here to read what they had to say. Two of the 17 are adults with TOF.

*there's 1 important way you can help

"Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHDs."  

(info by Children’s Heart Foundation)

All this awareness isn't just for fun. Awareness creates funding, and funding creates hope!

In all my looking around, I repeatedly come back to the Children's Heart Foundation as a reputable and productive channel for supporting research for congenital heart defects. Here's why:

*Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

*The American Heart Association (although they do a lot of wonderful things) puts only 30 cents of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the 30 cents that goes toward research only 1 cent goes toward pediatric cardiology for CHDs.

*Children's Heart Foundation promises to allocate over 75% of their funds directly to research and research-related education. Go here if you would like to donate.

Get this - in 1896, Sir Stephen Paget of Great Britain predicted that "surgery of the heart has probably reached the limit set by nature to all surgery; no new method and no new discovery can overcome the natural difficulties that attend a wound of the heart".* Was he ever wrong! Without funding for research we wouldn't be where we are today...who knows what else could be accomplished if we could match and surpass the funding of pediatric cancer research.

I could list many, many ways research is important for CHDs but there is one particular reason it is important to me. If Will's valve doesn't hold out he will need more work. The hope is that by the time that happens it can be repaired in the cath lab and not require another open heart surgery. Because cath procedures are less invasive and not as hard on the body, children recover quickly and have very little pain compared to open heart surgery. I would like that perfected ASAP!

*Litwak RS. The growth of cardiac surgery: historical notes. Cardiovascular Clinics 1971;3:5

Congential Heart Defect Awareness Week 2011 

*there's 3 strangers who saved my son's life

This one was fun to put together.

Click on their names to read more about them.

1. Mildred Stahlman -Will was born at VUMC which houses a small 16 bed NICU named after this doctor. She developed the first neonatal ventilator without which Will would not have survived. Will has spent about 35 days total on a pediatric ventilator.**

(image courtesy of Vanderbilt Reporter)

2. Martha Lott - the premature infant that was the first to use that ventilator. She grew up and became one of Will's NICU nurses. About 48 years and 1 month after she was born she was assigned to Will for about 3 days. She doesn't wear a button that says "I'm the first ventilator preemie" or anything like that...another nurse told me the story so I looked her up and found these articles. If you click this link you'll find another article about Martha. My favorite part is when Dr. Stahlman says "If she hadn't survived, I would have probably never put another baby on the machine."

Thanks Martha. 

(image courtesy of Vanderbilt Alumni Point of View)

3. David Bichell - Will's heart surgeon. I can't ever come up with much to say about him. Maybe there just aren't words.

(image courtesy of Vanderbilt University Medical Center website)

 **If you have heard me complain about how much I dislike that NICU ventilator, my feelings haven't changed. I was unsettled during every minute of that necessary evil. I can still recall the beeping sound it makes in my head out of nowhere.

Congenital Heart Defect Awareness Week 2011

*there's 7 reasons I am happy to have my CHD child

1. He is SO darn cute!
2. He reminds me that the human body can tolerate unimaginable things.
3. He reminds me to take one day at a time.
4. He reminds me to have faith and be hopeful when things look bleak.
5. Without him, I wouldn't have met so many inspiring people.
6. Without him, I wouldn't remember to be grateful for my health.
7. Without him, I wouldn't be a mother.

Congenital Heart Defect Awareness Week 2011

*there's Congenital Heart Defect Awareness week!

Starting tomorrow, I will be posting daily on 7 different topics related to our experience as a heart family. Several people are doing the same but I stole my format specifically from a theme this site used a couple of years ago called "7 for 7 Blog-a-Thon". Each day from February 7th - 14th the blog had cute topics like:
7 Reasons I Am Happy to Have My CHD Child
7 Ways You Can Help!
7 CHD Faces You Won't Forget

I decided that was too hard, so I am just going to count down from 7. Check back here to see what I came up with!

To perfectly combine today's Super Bowl with the beginning of Congenital Heart Defect Awareness week, please get yourself ready by checking out this article about a little boy with TOF who will star in one of tonight's famous Super Bowl commercials. If you also happen to be a Star Wars fan be sure to watch the commercial - there is a link to the video in the article.

Congenital Heart Defect Awareness Week 2011 

*there's the Pediatric Heart Institute

Watch this to hear some of the staff that I've talked with about Will talking about their work: Dr. Bichell (Will's surgeon), Dr. Baldwin, Dr. Dees, Dr. Fish, Dr. Johns (Will's cardiologist), and nurse Yvonne.

*there's a video

Sorry, not a video of Will. We still haven't figured out how to get those on the blog. But this one is really fun too. Remember this guy?



I almost warned you to get a tissue but maybe that was just me. (I think the girl named Ellie is my favorite.) That is OUR hospital with doctors, nurses, kids, and parents that we recognize! I could take you to all of those spots. Better yet, I will pray that you never need to go there and see the inside that hospital. The brunette nurse holding the butterfly sign is Brittney that I've mentioned before (Best Nurse PCCU Category; Medical Division). I told you she was beautiful!

*there's Santa!

We attempted to get a picture with Santa on Saturday! We went to this year's holiday party at the hospital for families of kids with CHDs just like last year. It was a fun little party complete with cute kids, food, and crafts. I finally got a copy of this book I've been wanting and songs were led by Mark and Jay O'Shea...country artists from Austrailia that were on season 2 of a reality show on CMT called Can You Duet. Like Will, Mark has TOF. Here are some photos of the song portion of the day:

 

Our sweet friend Kobe Preston doted on Will the whole time. He showed him how to sing, he patted him on the leg, he patted him on the head, he patted him on the back, and he even showed him how to clap!

 

As the songs were winding down Will was just getting started with his own lyric shakin' screamfest!

 

 

 

 

 

 

 And here is Santa!

 You can't tell by looking at this picture but Will is crying! 

Santa was fine from a distance but sitting

down next to him was too much for Will. 

This is the best (and only) picture of Will with Santa this year.

...notice Santa has removed his hat due to 

one of Will's previously mentioned phobias...

 If only it had helped!

Go here to see what the visit with Santa looked like last year.

Back at home cuddling with Daddy:

 And here is Mommy showing him his Baby's First Christmas ornament:

Recent news: Will's Mommy turned 35 yesterday!