Will no longer takes a pacifier! That was quick. It took one day. :) He only used it when he was sleeping so now I'm encouraging him to "shop" amongst his belongings for an alternate comfort item for naps and bedtime.
I just saw this article today about Dental Problems of Prematurity. I can tell the shape of Will's palate has been affected by his pacifier. I expect it to go away with time. I'm not looking forward to his first dentist appointment because he is very defensive about brushing his teeth. A remaining, yet understandable, sign of his oral aversion. He gags easily and that occasionally leads to vomiting. I will be very curious to see if they find any troubles in his mouth from his NICU time (such as the palatal groove sometimes caused by intubation they mention). It was nice to see them offer an explanation about why it took his teeth so long to come in. His first showed up at 13 months, right before I really started to worry if he had any teeth in there or not.
I've still got pictures to upload from his card appointment and the race in March so stay tuned.
Tuesday, April 24, 2012
Thursday, April 19, 2012
*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
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. |
Friday, April 13, 2012
*there's the race
Will's therapy center recently had a race to raise money for their expansion. It was a lot of fun!
I have more photos from the race to share soon but will start with this promotional video:
I have more photos from the race to share soon but will start with this promotional video:
Friday, March 30, 2012
*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 |
 |
| They got presents.... |
 |
| blew bubbles... |
 |
| and jumped on the trampoline! |
A few more pictures have been added to this birthday party post from November.
Thursday, March 15, 2012
*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.
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.
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.
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.
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!
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!
The echo was first. He did really well with the help of some good entertainment.
 |
| Choosing his next show on the Ipad. |
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. |
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?
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 |
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:
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!
Wednesday, February 29, 2012
*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.
Tuesday, February 14, 2012
*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.
 |
| 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.
Congenital Heart Defect Awareness Week 2012
Saturday, February 11, 2012
*there's heroes
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.
Tuesday, February 7, 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.
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
Monday, February 6, 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.
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.
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!
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