*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.)

*there's his hospital

I just found this video about Will's NICU. The first family that is interviewed (Izzy) was at the hospital at the same time we were. I recognized the mother from college and talked to her some. Coincidentally, several months later my parents saw the family at church in another part of the state.



Vanderbilt has put out a similar video on pediatric cardiology that I will share next month.

*there's his first flight

Oh Will. I think it is only fair that we record what your first trips on a plane were like. Maybe so we know what to do differently next time or maybe so you can laugh at us later. Either way, it was memorable and worth telling.

December 24th. The day before and morning of our trip to Pennsylvania for Christmas you were running a low fever. The same as about a week before so we treated it as if it were the same virus. You were your typical self except when the fever ran a little higher - then you got grumpier. You slept a little more but not very soundly and your appetite was low. We decided it was worth it to make the trip anyway.

Here you are (in short sleeves because of the fever) with our luggage and your car seat.

Airplanes!

We were so surprised at our luck that morning. We didn't have to wait at all to check in. Not a busy morning at the airport. We went through security fairly easily thanks to your Daddy who did most of the work. I had the important job of taking my shoes off and on and holding you. A luggage cart was easy to find and you even rode on top of it! Our gate was RIGHT NEXT to the airport play area so you got to play while we waited for the plane. When we got on the plane you played with a cup full of Cheerios for at least 20 minutes, including during the take off that you didn't notice was happening.

One of the many pictures you took of the seat while playing with your Daddy's phone.

You poured Cheerios out on the seat. Picked them up one at a time. Brushed some on the floor. Ate a few. When the Cheerios got boring you then sat just like this and watched shows on the Ipad.

Isn't this perfection?

The last 5-10 minutes of the flight did not go quite as well. You were upset when we had to take the Ipad away after the announcement about turning off electronic devices. So you cried. And squirmed. And tried to get out of our seats. But only for a few minutes. We were patient because we knew your ears may have been hurting you too. Also, it helped that there were 2 other kids on the plane that had been crying for most of the flight so in comparison you were a U.S. Airways star. I talked to the parents of those kids after we landed. It was their first flight too and the mother literally looked like a deer in headlights. She and her husband complimented your behavior. We talked about how it was stressful to fly with kids and I told the mother that we kept telling ourselves "It could always be worse...we could be doing this with 3 kids". She didn't seem very comforted by that.

Our luck continued when we landed. As we walked up to baggage claim there was one bag out and ready to go and it was ours! Then we caught a shuttle to the rental car office and you LOVED it! Daddy pointed out that we were on a bus which led to singing The Wheels on the Bus, complete with arm and hand motions. Your face was so happy. It was as if we were getting to watch the light bulb go off in your head as you made the connection between the song and an actual bus. I wonder if you were thinking "So THIS is what a bus looks like. The doors really do go open and shut."

Riding the luggage cart at the Philly airport.

Your view of the luggage cart through the eyes of a camera phone. You took several pictures of this!

Having fun on the moving hallway.

The one difficulty we had that day was getting your carseat in the rental car. Any time that carseat has to go in a sedan it's always an ordeal...it is no one's fault...but very frustrating...and eventually we got it in despite the mild argument it caused between me and your Daddy. We brought your favorite CDs to listen to in the car for our drive to Reading and that put us all at ease.

The return flight. Oh My.
Problem #1: Our bag weighed too much. If we couldn't find a way to make it 8 pounds lighter we would have to pay an additional $90. Yes that says ninety dollars. We quickly resolved that situation by removing Chris' new Carhart coat that obviously weighs about 10 lbs alone.

Problem #2: Security was not quite as smooth this time. I can't actually speak to the specifics because that burden fell entirely to Chris once again while I was holding you.

Problem #3: As we are walking towards our terminal we were suddenly rerouted due to construction. We could have proceeded to it inside the building on foot, but it would have required another trip through security and Chris' response to that was "No way". So we squeeze unto an unexpected elevator and end up in a very short line to go outside and get on a bus to drive us to our terminal. Problem #3a: I had already put your coat into our rolling carry on bag so you were barely covered from the cold wind. Problem #3b: Getting on a bus meant that Chris had to abandon our beloved luggage cart that was necessary to transport my carry on luggage, Chris' laptop bag, your car seat, our coats, and our diaper bag. This moment would be deemed by him as "worst moment of the entire trip/month/maybe even the whole year".

Since this is another rare bus ride you were ready to strike up "The Wheels on the Bus" once again. This time with a large audience of disgruntled travelers who were all angry about this inconvenient detour. And this bus was a very large city sized bus. I'm sorry to say that as you smiled a huge smile, loudly babbled to yourself, sang, and did the hand motions to your happy song no one around us appreciated the excitement of the moment in the say way you did. 

Problem #4: We made it to our gate only to learn that our plane had something wrong with it and they were waiting on maintenance. Our plane was a small one which equaled a very small gate waiting area which equaled us having to sit on the floor for awhile.

During our stay we took you to a walk-in clinic because of the low fever that wouldn't go away, your endless runny nose, and just general sickliness. They gave us a nebulizer to do breathing treatments with and it worked great. The F39 gate picture above was my viewpoint during an airport nebulizer treatment. And a tube feeding. Surrounded by others also sitting on the floor.

What would we have done without this thing?

Problem #5: We waited on maintenance to come take care of our plane for over 2 hours. We eventually were able to secure real seats. Chris and I took turns letting you roam about the terminal.

Climbing on Daddy

Problem #6: You had a little trouble tolerating one of your feedings. That is a nice way of saying that you threw up on me and you both. As you can see in the photo below you have changed from a yellow shirt to a red one.

Problem #7: Although you had fun marching around and looking at everything during our wait...there was one section of the terminal hallway that had an odd effect on you. We still have no idea why but for some reason in this same spot you would start crawling on your hands and knees every time we walked there. I don't have a phobia of germs but something about the floor of an international airport screams YUCK! at me.

Problem #8: When we were finally able to board, we sat down in our seats to immediately discover that you had a diaper that needed to be changed. That was an ordeal that I won't describe here but it is MY least favorite part of the whole trip/month/maybe even the year.

Problem #9: At this point we have all had a long day. Now we have crammed you into a small space where you were expected to be at least a little bit still and quiet. That didn't happen.

Window shade up...

window shade down...

Those shades on the windows make a very loud slamming noise every time they are pushed down. So I put my fingers there to block them from closing completely. Which was a little bit painful but worth it.

After moving the window shade 37 times you then decided to try to escape.

I don't have more pictures but I can set the tone of the rest of the flight by saying the entertainment didn't work as well as it did the first time. And you were much more determined to get away from that seat and find something else to do this time. And just like that last bus trip...onlookers were not amused or delighted to be traveling near an active toddler.


Problem #10: We get to our airport and you are officially hyper. So tasks such as waiting for a checked bag and going to the bathroom became difficult and exhausting. Basically I gave you the freedom to run all over the rental car waiting area. But I did have to chase you out of the men's restroom and keep you from breaking your neck on the escalator several times. Then there was another close call with a possible vomiting situation...

I think that's it. If I remember anything else from that day I may or may not type it up because forgetting may be best at this point...

Since most of this was unavoidable (unless we had just stayed home!) there really weren't many lessons learned. I can say we will probably never fly with U.S. Airways again. I don't remember when or why we decided the airline was a large part of the problem that day. But at the time Chris made this declaration I was in agreement. One of the bright spots I can acknowledge was that we had the wisdom to get direct flights. Having to switch planes at another airport would certainly have made the problems list much longer!

*there's what he's saying lately

*Will takes roll. A lot. He talks to himself in his own little language and we can only understand the occasional word. But it inevitably it is the roll call of family names. "Blah blah blah blah Daddy, Blah blah blah blah Mommy, Blah blah blah blah Peaches, Blah blah blah blah Will". Sometimes it's a chant that sounds like "Mommy Jody Daddy Peaches". Sometimes he includes other relatives and even Sissy the other dog in his life. He is an expert at taking attendance. Once the roll call included a pretend sneeze after each name. He thinks sneezes are really funny.

*He makes up songs. They don't make any sense to us but you can count on a grand finale that includes his arms lifting in the air, as if leading his own little orchestra in a final "Tah Dah!!!". Recently he was singing a low key, calm song to himself while he was playing. Some of the lyrics were "no no Will sit down". Ha!

*He still thinks This Little Piggy is SO FUNNY! Unfortunately he will grow up not knowing the part about roast beef. When I get to that toe I always insert the name of a different restaurant. Such as "this little piggy had Taco Bell" or "Carraba's" or "Jimmy John's".

*He rarely says "Hi" but ALWAYS says "BYE!!". He says goodbye loudly and proudly most every time he leaves you. He may be running into the next room and coming right back...but he says "Bye Mommy!" on his way through the door. Sometimes if we are leaving the living room to go change his diaper he will wave behind him and say "Bye ABC's!" or "Bye O's!" depending on what he was doing or eating. By ABC's he is referring to us writing them. He loves for me to write letters for him to see and say. By O's he means Cheerios, one of his favorite snacks. One morning as we left the house he was walking through our living room and I heard him say "BYE mote!" to the remote control he saw.

*He has started to use the word "Ow!" and the phrase "Oh No!" inappropriately. Will, it doesn't hurt when I kiss you on the cheek so there is no need to say Ow. And dropping a toy is not worthy of a desperate plea of "Oh No!".

*When he wants someone to come get him out of his crib he will conduct a long and dreadfully upset cry for help. But when I walk in the door he smiles and calmly says "Hi Mommy".

*there's Christmas 2011

We spent Christmas 2011 in Pennsylvania! Will got to meet several relatives and friends for the first time. He got lots of fun gifts from everyone - lots of Elmo and Mickey Mouse Clubhouse stuff as well as cars, a kitchen, and a choo-choo!

Will and his new Hokey Pokey Elmo

Will and Uncle Matt

Will and 9 year old cousin Jake (also a preemie - can't you tell?)

Will showing Uncle Matt how to work his phone.

Jumping on the bed as Jake runs to join him

Will thought "Jayt" was hysterical

Trying on Jake's shoes

Will and his Nana

 

Squeezing in another quick visit with Great GrandPop to get some pictures made together

Will didn't understand the importance of getting this done since we can't see Great GrandPop very often. He was really, really tired!

Finding buttons to push at Great GrandPop's house cheered him up some

More buttons to push on this "Mote"

Happy enough for a picture now

In the next 4 minutes I will be asleep in the car on the way to the airport...

Will and I were both sick during the trip. When we got home his doctor declared he had bronchiolitis and an ear infection. We started antibiotics right away and he was better really quickly. Maybe the next time we go he will be well and have more of an appetite. Then his Daddy will be able to introduce him to all his favorite foods from home - ring bologna, cooper sharp cheese, red beet eggs, and Philly cheesesteaks.

*there's Santa

One Saturday this month Will's school had a Christmas party and he got to see Santa! We tried to prep him by making him a Portable North Pole video of Santa talking to him. It seemed to help because he wasn't scared...but he also didn't like Santa enough to sit with him by himself either!

 He also got to see a puppet show and make an ornament that day. 

Then Santa came to visit again during a weekday party.

I guess he wanted to see what that coat felt like.

No thanks!

Since he has seen Santa in person twice and has seen him in books, on t.v., and in some of his new toys he is now a Santa fan. If he hears a "Ho! Ho! Ho!" anywhere he smiles and says "Santa!".

*there's inspiration through art

Back in August we had pictures made of Will by Kristine Neeley. He was granted a photo session through an organization called Inspiration Through Art that connects children with serious illnesses to volunteers that provide cool things like professional photography. I applied to the program and when I learned he was accepted I got to look through a list of photographers that have volunteered to take pictures of kids. Luckily, I found one that was nearby (Franklin) that took just the kind of pictures I was hoping for. It is one thing to be kind enough to volunteer to offer your services for free, but it is quite another to be this incredibly talented and be able to capture a typical afternoon in the life of Will so perfectly.

Kristine was really great and I can't recommend her or Inspiration Through Art highly enough. Go here to read her blog post about the session and to see some of her favorite shots from the day. Below I have copied some of my favorites. I am just now showing them because I have been planning all along to use one for our Christmas card and I didn't want the picture to be old news by December. Here are several of them and I'll have more in the future.

Weight Gain update: Will has had a virus with a fever that lasted several days. He doesn't eat much when he doesn't feel well so I didn't even check on how much he weighed this week. I forgot that last winter went this way too - weaning attempts being stalled over and over for each illness he caught. It can be discouraging to remember that Will is still close to the same weight he was in June of this year. On the bright side he has definitely outgrown the SuperWill shirt he is wearing in the pics above!