*there's hunting

Will with "cousins" Addison and Allie Kate ready to hunt Easter eggs. Me with little Avery in the background

Counting them up

Puppies can help

 

They got presents....

blew bubbles...

and jumped on the trampoline!

 

A few more pictures have been added to this birthday party post from November.

*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 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.)

*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!