*there's his next appointment

Next week we will be taking another one of these:

at Will's annual cardiology appointment.

Wish us luck! I don't know what other procedures he might have besides an X ray...either way we are looking at a confined toddler situation and there's an 87.9% chance that it will be stressful for both of us.

*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 heroes

Who are we? 

By Steve Catoe (A 44yr old CHDer with Tricuspid Atresia...he passed November 2010. He was a hero in the CHD community)

Start counting... we're roughly 8-10 out of every 1,000 people (or 1 out of every 100-125, if you want a number you can get your head around.) We represent both genders and we are all ages. A million of us are adults, and about 800,000 of us are children.

We've made it through surgeries, hospital stays, infections, Endocarditis (infection of the heart), pacemakers, and heaven knows what else. We've given gallons of blood, one vial at a time. We've fought back against tremendous odds. We've been so sick that we've scared the world's best doctors witless... and then amazed them even more when we've fought back. 

We've celebrated our victories and we've mourned our losses. We know that most of those who came before us died, including 14 of the first 70 to have the Blalock-Taussig Shunt. We know that most of us shouldn't even be here and so we live every moment as if it is our last - because it could be.

We're Cardiac Kids and Heart Warriors. We have an amazing inner strength, but we are terribly fragile at the same time. We refer to our parents as Heart Dad and Heart Mom, and we use those titles as Badges of Honor. Why? Because they DESERVE them! They were the first ones to discover that a heart defect doesn't just break one heart, it breaks three. 

We work, we play, we pay our taxes and we live our lives. We're in your community, in your church, in your school, in your office, and quite possibly in your home. We move a little slower, do some things a little differently, but we usually get along without causing a fuss. 

We are people living with Congenital Heart Defects.

  People living with CHDs have a lot of people to thank. Here is a movie about 3 of those people.

 

Congenital Heart Defect Awareness Week 2012

*there's Congenital Heart Defect Awareness week

I will start this week by reluctantly telling everyone about this giveaway. This blogger/mom has a son with TOF/PA. Liam is similar to Will in many ways. It has been nice to have her to compare notes with. She has made a beautiful piece of art (that I really want for myself) and is giving it away on her blog. So if you must, visit her blog and enter to win. I don't think there is any rule against giving the prize to someone else...so if your name is chosen don't forget that you can give the prize to me. ;)

Kicking off the week with a video from Will's hospital about the research they are doing for baby hearts. The first part is encouraging people to donate money to fund Vanderbilt research. If you want to skip that part and hear what the doctors are up to you can fast forward the video to 1:20.




Pretty hopeful isn't it?!?

Also, the Tennesse Infant Pulse Oximetry Screening bill is going to the House finance subcommittee tomorrow. You can follow it's progress here. And here is a copy of the actual bill. You may recall me mentioning this last year. In a nutshell, it's going to save lives.

Congenital Heart Defect Awareness 2012

*there's Feeding Tube Awareness week

Feeding Tube Awareness is a great website with info for families like ours. They are hosting Feeding Tube Awareness week this week.

Today they suggest we talk about

"Why my child has the tube they have now - a highlight on the medical conditions that require tube feeding."

Will's feeding tube is due to 3 factors - prematurity, a congenital heart defect, and an oral aversion. Many kids with just one of those things have feeding tubes...so having all 3 basically guaranteed it for him. Here's why: 

Prematurity -

Will was born so early that he wasn't even expected to eat for awhile. He was given an NG feeding tube (meaning through the nose and down into the stomach) within a few days of being born. Any preemie in his predicament gets the same. Sometimes when it is time for premature babies to learn to drink from a bottle they have a hard time learning to coordinate the suck/swallow/breathe pattern. This was true for Will, but it is also where his heart becomes relevant.

Congential Heart Defect -

Even if Will had been born as a full term baby his poor heart function in those early months made it exhausting for him to eat. Sucking was as tiring for him as running is for us. After taking a few drinks we would stop him so he could rest...and he would be panting. He wasn't able to keep up with his own desire to drink. Also, the instances that he did drink were influenced by his oral aversion.

Oral Aversion - 

Will had a lot of bad mouth experiences in his early months. He was intubated 6 times by the time he was 2 months old and he was subjected to various other kinds of medical intervention over and over every day. This defenselessness made him very choosy about what he would let in and around his mouth. Another cause of his oral aversion was reflux. This made it painful to drink. Sometimes otherwise healthy kids with reflux develop an oral aversion. And they too, need a feeding tube to survive. 

After several months of unsuccessfully trying to learn to drink while getting fed with his NG tube, Will had surgery to place his G tube which is much better for long term use. After many months of feeding therapy he is now able to eat and drink a lot...sometimes even most...of his food and liquids every day! We still use the tube several times a day so he will keep his feeding tube for awhile.

I just learned about another really helpful group called The Tube Fed Foundation. They can be found at www.mygrowbutton.com. Cute website name!

*there's Will wearing red

February 3rd, 2012 

National Wear Red Day for Heart Health

Will wearing red for hearts! (He's also asking for more goldfish, but at least it looks like a smile.)