The Fontan

Our 4 year old child, Corey, is scheduled for the Fontan open heart surgery on Tuesday, April 7th.  Many people probably don't know why Corey needs this surgery, why it's happening now, or what comes next. So I have decided to write information about the surgery in interview format.  There are links in dark grey below to sites that provide more details.

Let's start with the basics...

Why does Corey need heart surgery?

Corey has a congenital heart defect called tricuspid atresia.



Kids with tricuspid atresia lack a tricuspid valve, and therefore, lack a functioning right ventricle. In other words, Corey has just one functioning heart pump instead of two. Kids with tricuspid atresia typically require almost immediate intervention. Corey required emergency heart surgery when he was barely two weeks old. For six months, until his second surgery, Corey's blood circulation was in a tenuous position. Because Corey has holes between the left and right sides of the heart (required during development to allow blood to flow at all), much of the oxygen-poor blood returning to his heart to pick up oxygen was being pumped back to the body before passing through the lungs. Because of this, his oxygen saturation levels were low; he didn't have much energy to do important things like eat.

The long-term fix to Corey's situation was a two-step process to re-route all blood returning to the heart from the body directly to the lungs via the pulmonary artery – in other words, to bypass the right side of the heart completely. This fix would stop the mixing of oxygen-poor blood returning from the body and oxygen-rich blood returning from the lungs.

The first step of this two-step process is an open heart surgery called the Glenn surgery, which Corey had done when he was 6 months old. The Glenn procedure re-routes the blood from the head and arms directly to the pulmonary artery, bypassing the right heart. The next step is the Fontan procedure.  Before the Fontan can be done, a cardiac catheterization is required. Corey had his cath yesterday.

What is a cardiac catheterization, and what was discovered during Corey's 3/31 cath?

Corey's cardiac catheterization was done for two reasons. First, blood pressures were taken on both sides of the heart to learn whether Corey's circulation is such that it will allow for the post-Fontan procedure circulation. Second, the pulmonary arteries were looked at in detail to determine whether the stenosis (narrowing) Corey has is great enough to require the placement of a metal stent to open it. The pulmonary stenosis is a necessary by-product of Corey's second heart surgery, the Glenn, that he had in the summer of 2005 when he was 6 months old.

Both questions were answered in our favor: Corey's blood pressures are very favorable to allow for the Fontan surgery, and the stenosis is not great enough to require the placement of a stent.

So now that the catheterization was a success, we are able to move on to the open heart surgery Corey will have next week, the Fontan.

What is the Fontan procedure?



The Fontan procedure is an open heart surgery that Corey will have this spring, currently scheduled for April 7. (Another good overview of the Fontan can be found on Wikipedia.) The Fontan procedure re-routes the blood from the lower part of the body directly to the pulmonary arteries, bypassing the right side of the heart. The pressure and flow created by the left side of the heart will push the blood through the entire circuit on its own, without any help from the right side of the heart.

Why is Corey having this surgery now that he's older?

The doctors at Johns Hopkins like to wait until the kids are between 3-5 to perform the Fontan surgery.

The surgery cannot be performed right after the Glenn surgery because the blood pressures in babies is too high to handle the Fontan circulation.

Additionally, a Gortex conduit will most likely be used to go around the right side of the heart directly to the pulmonary artery. This conduit needs to be big enough to last Corey into adulthood without being too big to handle the current blood pressures in Corey's body.

However, Corey's left ventricle is doing a lot of unnecessary work right now to keep his oxygen saturation levels high enough since it has been pumping oxygen-poor blood back to his body for more than 4 years. If we wait too long, then this will wear out Corey's left ventricle prematurely.

So after the Fontan, Corey's heart will be fixed?

Not exactly. Corey's surgeries have been palliative, meaning that all three are intended to reduce the affects of his heart defect - the surgeries are performed as a workaround, not a fix. Since the tricuspid valve never formed, the right ventricle did not properly form. There is currently no way to grow a new ventricle. However, kids like Corey have a great chance to live long, fulfilling lives, far into adulthood.

How long will Corey be in the hospital?

Kids who did well with the previous surgeries tend to do well with the Fontan. Corey was in the hospital about a week for both previous surgeries so this bodes well for his Fontan stay. We were told during the cath that Corey's stay will most likely be in the range of 7-10 days. For the first 3-4 days after the surgery, Corey will be in pediatric ICU. After his pain is being handled and he is well enough, he will go to the Children's floor for 4-7 days until he is well enough to come home.

So after the surgery Corey will just heal and recover?

Basically, yes, but if the previous surgeries are any indication, unexpected surprises are likely along the way to a full recovery.  Corey's two previous surgeries went extremely well but there were several moments of great concern during the recovery period in the hospital for both.

Several factors determine the length of hospital stay post-Fontan surgery. Chest tubes will likely be inserted into Corey's abdomen to drain any fluid collecting around his lungs. This is fairly common after these heart surgeries. After the Glenn, Corey had a single chest tube for a few days. Another main factor in determining the length of stay is how Corey's heart and body adjust to the new blood circulation. The post-Fontan circulation will be a big shock to Corey's heart and it will need to make adjustments to adapt.

Feel free to ask additional questions you might have about the process Corey will be going through. It's tough to know exactly what questions people have. I'd be glad to answer any as well as I can.

Fontan & Lead Test

Can't get much heavier than that for a subject line, can I? First, let me say that Mason's lead test came back fine, thank God!

On to the Fontan. I spoke with Dr. Brenner yesterday, and the latest news is that we can either do the Fontan in October, or we can wait until next April. Factors to consider: 1) How is Corey doing now? That is, is he out of breath too easily, or is he playing well and holding his own? 2) Should we push ahead now, while Corey is healthy, in hopes of a better recovery time? If we wait, will his health decline, thus making the Fontan recovery more difficult? 3) Are there any other major events happening that would make the Fontan more difficult on our family as a whole in October or April?

Dr. Brenner and Dr. Vricella, to our surprise, essentially put the ball in our court. Dr. Vricella prefers to do the Fontan between ages 4 and 5. Corey will be 3 years 8 months in October, and slightly over 4 in April. So what are we going to do? The short answer is, we don't know. We are leaning toward waiting until April, but we want to discuss it further, and we are also hoping to get Dr. McKay's input. We'll, of course, let you know.....

Crystal Ball

There has been some interesting discussion on our online congenital heart defect support group lately about CHDs and how they have shaped our lives. A question was posed, discussion ensued, and somewhere along the line the focus became this: "If you could change your child's CHD, would you?" I found this particularly interesting because I think that this is really a question that everyone can relate to, in the form of, "If you could change X, Y, Z in your life, would you?" If you did change X, Y, or Z, you could potentially be in a different place, with different people, living a different life. Would you even be the person you are today?

Reading through the responses, I found that people fell into 2 distinct categories with respect to this question. The first group said they would not change their child's CHD, because the CHD had shaped their lives/made them better people/everything happens for a reason/this child was meant to be with us/etc. The second group said, are you kidding me - who would choose to suffer like this? Give my baby a healthy heart!

And then the crystal ball made a rare appearance, and I felt like I was given a chance to look into Corey's future as a child with CHD. Two mothers, one with a 5-year-old, and one with a teenager, asked their children the question: "If you could change your heart, would you?" The responses were very different, but both interesting.

Mother of the 5-year-old:

"I took the opportunity the other night to talk with Anika about our discussion. I asked her if she had the choice, would she have wanted to be born with a more traditional heart. A heart like her parents have . . . As she slurped her sushi seaweed soaked with soy sauce (that was just so fun to type I had to include it) -- she said 'nope.' I asked her why, and she said 'it's what makes me different'."

Mother of the teenager:

"I remember when Becca was little I am sure she would have said the same thing. She is now 15 yrs old and all she wants...'I just want to be normal'. As she has gotten older the physical restrictions (her body won't let her run or be active for very long at all) have hurt her psychologically & socially more...she is so very aware that her pulmonary hypertension could kill her...it is so, so very hard to have friends when she misses school and 'friends' just do not understand and on and on. Last week we were on our way to see her cardiologist in town and get a blood test (her potassium has been low) and just started to cry...she is soooooo tired of 'this...' she 'just wants to be normal'."

So what will it be like for Corey? Perhaps at 5 he will feel like Anika. He certainly is loved and adored now. People I've never met have expressed their concern for him. It's almost like he's famous. But at 15, will it be different?

What side of the fence do we fall on, you might ask? If we could change Corey's CHD, would we? The answer is absolutely "yes", yet still not simple. Damian and I would both tell you, in a moment, that should the genie from "Aladdin" grant us even one wish, we'd take a healthy heart for Corey. It's our greatest wish, of course. But I still feel like Corey was meant for us. He has a chance with us. And we are certainly so thankful that he was born now, in a time when Dr. Brenner and Dr. Vricella can help him to have as normal a life as possible.

Corey's latest echo...

Today we packed up the boys and took Corey to Johns Hopkins for his latest echo plus consult with Dr. Brenner. Before I go into details, let me just say that Corey's heart looks very good, and the appointment went as well as we could have hoped.

Now let me describe the day. On the drive to Hopkins, Corey asked, "Are we going for my echo now?" We assured him that we were. He also took note of interesting sights through his window. For example, he noticed a street sign that was not straight. He said, "Mommy! Daddy! That sign is leaning over! Why is that sign leaning over? Maybe a car hit it." Ha ha!

Damian dropped Corey and me off at the front door of the Outpatient Center at 9:15 AM, where Corey was immediately interested in the turnstyle and insisted on going in it. "Are we gonna go in zare, Mommy?" In fact we did. Once we were inside, I let him down to walk through the halls, and he pointed out all the lights to me as well as any other passerby who might listen. As we were walking, he said, "Are we gonna take the black elevators, Mommy?" I told him that I wasn't sure what color the elevators would be, but we would certainly take a really big elevator. When we reached the elevators, I was surprised and amazed to see that they were, in fact, black, as we haven't been to Hopkins in 6 months. Corey said, "See Mommy! The black elevators!" What a memory that kid has.

After we checked in, the four of us headed back to an exam room. Corey was weighed at 30.6 lbs., his blood pressure was taken (normal), his O2 sats were taken (90 at rest, which is excellent), and he had an EKG. He was terrific for all of it, saying, "What's next?" a few times. After this prep work, we put him in a gown, talked to Dr. Brenner for a few minutes, and then Damian ran up and down the hallway with Corey. There was a purpose to this, other than wild glee (what kid doesn't want to run up and down the halls?). Dr. Brenner wanted to measure his O2 sats after exercise, especially considering my complaints about Corey becoming more and more winded with activity. Corey's sats plummeted to 70 after exercise. This is another sign that he will need the Fontan.

At this point Corey started to ask when his echo would be happening. You see, we'd promised him any of three lovely lollipops as a treat, as well as a viewing of "Shrek", during his echo. We even had a practice session yesterday, in front of the TV, complete with a lollipop and fake probe on his chest. He was looking forward to that lollipop! And so he eagerly climbed onto the exam bed, got comfy, chose his green lollipop, and informed the echo tech, "Last time I said plah!" Which in fact he did. During his last echo, he stuck his finger in the probe jelly, put it in his mouth, and said, "Plah!" I don't think he remembers this, but I was concerned that Corey would object more to the probe jelly than anything else, as he doesn't like anything gooey or sticky on any part of his body. In fact, if he gets a little jelly on his finger, he yells, "Wipe it off!" And so, I'd told him the story of his last echo, including how he said, "plah", and explained that he would have a little jelly on his chest, though it wouldn't hurt.

Corey does much better with any situation if he's been prepared for it, and I think we must have done a decent job preparing him, because he could not have been any sweeter while the tech was performing the echo. He chatted with us, sucked on his lollipop, watched "Shrek", and did what the tech asked of him. He even put up with leaning his chin way back so she could look at the arteries in his neck. We were so proud of him for being such a good boy.

After the echo was finished, the doctors reviewed the pictures, and Dr. Brenner delivered the good news: everything is as it should be. The next step will be some prep work prior to the Fontan, such as a CT scan. The timing for the Fontan is yet to be determined, however. Dr. Brenner plans to discuss it with Dr. Cameron and Dr. Vricella, and then he will call us with a firmer timeline so that we can create a plan of action. (deep breath) I'll update the blog as soon as I know more.

We took several pictures during the process, so hopefully we'll have a chance to post those soon as well.

In other events, Corey had his birthday party this weekend, and I think the pictures tell the story very well. Corey had a terrific time - he loved seeing all his favorite people, and he loved opening presents and eating unlimited candy and cake. The cake, by the way, was made by his Nanny, with lots of love, and it was gorgeous. It even featured a picture of Corey in the window of the front car, conducting.

Last night we learned that, sometime during Corey's party, he learned a new phrase. He was playing on the floor with Damian, tossing balloons up in the air and catching them, when suddenly he announced, "Daddy! When I catch lotta balloons, then I'm money!" Damian and I looked at each other and grinned, then Damian said, "Did your Uncle Shawn teach you that?" Now if you ask him, "Corey, what happens when you catch a lot of balloons?", he'll happily tell you, "I'm money!" Thank you Uncle Shawn. :-)

And thank you to everyone else for making Corey's party a success!

Corey's next echo

Corey's next (non-sedated) echocardiogram is scheduled for Monday, February 25th. This month. It's already February. I feel like time is getting away from me. This echo brings us yet another step closer to the Fontan, which will most likely be in October of this year. This year.

I look at my little boy when he's playing, and happy, and part of me wants to stop the stupid clock from ticking and bringing us closer and closer to the Fontan. But other times I see him get so out of breath, hear him gasp for air after running himself a little too hard, and I just want to speed up the clock and get him the Fontan. I want it over with. He needs it. There can be no doubt about that. And so it must be done.

But I am afraid. I can't stop the words of another heart mom from ringing in my ears when I think about this very major surgery. She took her little girl in for it, and she lost her little girl. Complications. I don't remember the details. What I remember is what that child's mother said afterward. "When we took our daughter into the hospital, she was skipping and laughing. I can't stop myself from thinking that if we didn't do this, she'd still be with us."

I don't want to say those words, ever, about Corey. I have to do this, though. I have to. But God I don't want to. And so I look back at the clock and wonder - what if this is all the time I have with him?

Corey's PC Appointment

This morning we packed up the little dudes and headed for Hopkins for Corey's 6 month check-up with his pediatric cardiologist, Dr. Brenner. First let me say that everything looks fine. It was a "benign" visit, according to Dr. Brenner. Words like "boring" and "expected" were used, which I find comforting. We did not have an echo today, as Dr. Brenner did not think it necessary. However, he did examine Corey (while Corey munched away on a pack of cookies), and afterward told us that Corey is doing very well for a boy in his position. Corey gets winded easily, but this is also to be expected, and he may continue to self-regulate when exercising/playing.

Things are also beginning to solidify a bit with respect to the Fontan. At our next visit, when Corey is 3 (probably very early spring), we will have another echo. The following summer (at 3 1/2), we'll have a cardiac catheterization (to get a really good look at Corey's heart and surrounding vessels), and then we will schedule the Fontan. Corey may have the Fontan as early as October 2008. Seeing that in writing gives me the chills.

I also related Sam's story, briefly, to Dr. Brenner, and asked him what the chances are of something similar happening to Corey. His response was less than comforting. He said that healthy children are admitted to the hospital with bronchitis which develops into pneumonia, and they die. Corey, while he may be doing really well, is at a slightly higher risk for a downward spiral should he get bronchitis, but there is no way to predict the likelihood. So he told me that we should be vigilant about caring for Corey (by keeping him away from sick people and by washing our hands often, etc.), but he also reminded me that we can't live in a bubble. We must continue to live in hope and just do the best we can.

This weekend we'll be attending the Hopkins Heart Party, and Dr. Brenner intends to introduce us to a little girl who recently successfully went through the Fontan. I'm sure it will do me good to meet her and see her doing well. Not to mention speaking face-to-face with her parents.

I'll sign off with a cute Corey quote. Last night when Damian was giving the boys their nightly bath, Mason shot out a huge snot rocket, which he promptly wiped into his eyebrow. When Corey came downstairs after the bath to see me, he announced, "Mason! Really big booger, in eyebrow!" Ha ha ha!

Sedated & Fetal Echos

This morning Corey woke up and was angry as a hornet after about 15 minutes. He wanted some food, and I wouldn't give it to him. I was only allowed to give him clear liquids until 7 AM, because he was due to be sedated later. He went over to the table and then to the fridge and pointed out all the food there. When I shook my head "no", he threw a major temper tantrum, complete with pooched out lower lip. I felt awful that I couldn't explain to him the reason I couldn't feed him.

Until we left, we spent our time trying to distract Corey from the fact that no food was coming his way. It worked for a little while. When we arrived at Hopkins, he was pretty put out, and he spent all his time pre-sedation wailing and telling everyone off. Poor kid. Finally, he was given the sedation medication by mouth. It took him about 45 minutes to actually fall asleep, however. He was pretty loopy/drunk by the end, but he finally did pass out.

As Corey was heading in for his echo, I was in another room starting my fetal echo. Damian went with Corey. Before my fetal echo was quite finished, Damian and Corey came back into my room. Corey was still completely out - limp as a rag doll, head lolling all over the place - so they were able to sit there quietly while the fetal echo was completed.

The tech gave me a scare when she said, "Ok, now it's time to review these pictures. Then Dr. Thompson will be in to take a few more pictures." I smiled, but I thought I was going to throw up. Every time those words have been said in the past, "We just want to take a few more pictures", the news has been dire. So my heart went into my throat, and I had to take some deep breaths to keep from utterly panicking.

First let me say that Corey's echo looked excellent. Everything looks perfect. We are now in a "lull phase" according to Dr. Brenner, which means visits every six months, and the Fontan most likely when Corey is 4 or 5 years old. Wa hoo! Second, let me say that the fetal echo looked normal. I nearly cried with relief when the doctor told me this baby's heart looks normal. I said, "Honey! We're going to have a baby with a healthy heart!"

A little while later, Corey woke up, still drunk and loopy acting. But we were able to give him a bottle (which he sucked down), and then we took him to the cafeteria, where he packed down some lunch. Now he is taking a real nap in his crib. He had a big day!

So, I must say that today was nerve-wracking, but we got the best news possible on all fronts. Thank God.

Corey's vitals:
O₂ Sats: 89%
Heart Rate: 105 bpm
Blood Pressure: 80/40
Weight: 24 lbs 3 oz
Height: 34"

An article relating to brain function and school in CHD children

I am attaching a link to an article recently posted on the pdheart list titled "The Emerging Recognition of School and Behavior Problems in Children with Congenital Heart Defects". Here is an excerpt, which struck me as relating directly to Corey:

"In preschool children who required surgery in early infancy, there is a growing recognition of delays in certain elements of speech and language. To greatly oversimplify, speech and language can be broken down into two components: receptive language (the child hears and understands words), and expressive language (getting the words out with proper grammar and pronunciation). In most of our children with CHD, receptive language is normal: if you say “point to the apple”, the child will point to the apple. However, expressive language is delayed: when you point to an apple and say “what is that?”, even though the child knows it's an apple, he or she can't seem to find the word."

http://tchin.org/resource_room/chdschool.htm

I found this article to be both interesting and mildly disturbing. We were told by the pediatric cardiologists that Corey would lead a mostly normal life. I suppose I didn’t focus on the “mostly” part of that statement. He appears to be a normal healthy child now, and he seems to be a smart kid, though the paragraph above certainly fits with his behavior, and this leads me to wonder about the unknown impact on his brain. I suppose that only time will tell.

Another heart baby makes it through the Fontan!

On the heels of the news about Corbin's passing, we got news that an HRHS child, Landon Bell, came through his Fontan with flying colors! He was extubated on day 1 of his recovery. Go Landon! This news was just what I needed to hear, as I've felt like there has just been too much strife in the heart community lately.

We are now looking forward to Corey's second July 4th celebration. We'll skip the fireworks, but we'll spend time with family and do plenty of eating, drinking (mineral water for me), and socializing. Corey likes nothing better than to be busy with tons of people around, so I imagine he'll enjoy himself.

This Friday is the first of the big tests for the new baby. It's a first trimester screening: a maternal serum screening and a nuchal translucency ultrasound. We've already done the blood test. Damian pricked my finger (after he said, "Hi my name is Damian and I'll be your nurse tonight. Congratulations! You're my first patient."), and we added blood drops to a card which we then mailed off for analysis. When we have the ultrasound on Friday, they should be able to give us the results on the spot. This test will tell us the likelihood that this baby has or does not have trisomy 13, 18, or Down's. It doesn't detect heart defects, but it's still very informative. I'll feel better once it's behind us, that's for sure. I'm hoping and praying for an uneventful pregnancy and a healthy baby this time around.

Happy 4th!

Another heart baby earns his wings

As many of you know, being a member of the heart community, I follow many other children with various forms of CHD. I have gotten to know so many of these children and their families through their blogs and carepages, and though we have never met, when we lose one, it feels like a kick in the stomach. When I joined this club that nobody ever wants to join, I entered the world of suffering and dying children. So why do I follow these kids, you ask? Why would I subject myself to this? Because I have to. I have to know that we are not alone. That Corey is not alone.

Closest to my heart are probably Ewan Kennedy and Timmy Deskin, because they both have tricuspid atresia, and I talk to their moms. These women know what life is like for us, and the success of their children gives me hope like nothing else in the world ever could. Thankfully, both boys are doing well at the moment. Many of you probably remember Timmy and the tough time he had during his Glenn, but he made it, and he's home now with his twin, Tyler, where he belongs. And Ewan, well he was one of the first heart kids I ever saw pictures of. I'll never forget how beautiful he was, with his little blond hair, and how when I saw him for the first time I thought, "Ok, I can do this. This is going to be Corey. It has to be." Ewan's Fontan was originally scheduled for this summer, but it has been put off for a bit. And so I am thankful for these little boys, that they have suffered and endured. I hope they always do.

This brings me to the newest heart angel. Little Corbin Grabb. He had HLHS, and he was only 2 years old when he passed away just a couple of days ago. Complications from the Fontan. I hear those words all the time, and they echo in my head. Complications from the Fontan. Complications from the Fontan. This little boy fought hard and suffered through a total of 9 open heart surgeries, until his little body just couldn't take it anymore. He never woke up from the final surgery. He just earned his angel's wings and left all of us here behind. And while I am thankful that his suffering is over, I am so angry that someone so little should have to endure so much, only to lose his life in the end. And I am afraid. Afraid that one day that will be Corey. I don't dwell on it most of the time, because if I did, I'd go crazy. Stark raving mad. But when another heart baby dies, I can't help it. That fear creeps in again.

Don't tell me to be thankful for every day that I have with Corey, because I am acutely aware that each day is a gift. I don't think any heart parent takes their child for granted even for a moment. If I lose him, will I have kissed his fat cheeks enough? Will I have hugged him enough? Loved him enough? Did I make his time here the best it could be? The answer I always come back to is that there is never enough time, never enough kisses, never enough hugs, never too much love. So you just do the best you can and hope that he stays around and gets the chance to grow up.

Now you know why I cringe when anyone looks at Corey and says, "Oh, he's such an angel!" I realize it's meant to be a compliment, but in the world of heart babies, the definition of "angel" is "dead child".

(Sigh) Well, I'm sorry to all of you for giving you such an uplifting post before the holidays. I'm going to sign off now and go kiss my sleeping child.

Corey's Cardiology Visit

It has been six months between cardiology visits for Corey -- almost half of his life -- so we were excited to hear how Corey's heart physiology is doing now that he has grown and developed for half a year. The consensus is that he's doing great! Dr. Brenner examined Corey and was able to determine that his Ventricular Septal Defect (VSD) is now completely closed. This would be 100% fatal, of course, if Corey had not had his surgeries but as it is now the VSD closing is no big deal either way.

The nurse took Corey's vitals and everything looked good: weight: 22lbs 12 oz, height: 31.75", oxygen saturation: 86-88%, blood pressure: 86/42, heart rate: 101bpm. The nurse also did an EKG that looks as expected with no worries. The last time we took Corey to Hopkins the doctors and nurses had no problems examining Corey but now it's a different story. Corey needs to feel like he is in control and mainly just wants to crawl all over the place. The hardest part of the exam today was getting Corey to sit still long enough to get a good EKG. The nurse pulled out the soapy bubbles and Corey was amazed... and calm.

Dr. Brenner wants to keep Corey on the same medicine schedule as he is now at least until the next appointment in four months. Dr. Brenner also wants Corey to have an echocardiogram done at the next appointment so we went ahead and scheduled a sedated echo but with the hope that Corey will be able to sit still awake long enough to have the echo done without needing sedation.

After finishing up with cardiology we were fortunate enough to be able to meet with Corey's surgeon, Dr. Vricella, who also thinks Corey is doing great. He said Corey is an excellent Fontan candidate and that is always great to hear. Corey most likely won't need this next surgery for a few more years. Dr. Vricella then explained the Fontan in detail, which was very interesting. Jenn and I continue to be like sponges in terms of learning about Corey's heart, its condition, and its future.

We were a bit apprehensive about this appointment, especially Jenn, due to the shocking news we received at several previous appointments. However, it is great to announce that everything looks good! We are at a very good stage right now and we hope that it continues for years! It will be great to get the echo in four months to see Corey's detailed heart function but until then we are very pleased!

Well, it was the Fontan on TV......

Last night we watched the "Miracle Workers" show that dealt with a 4-year-old HLHS child who was ready for the Fontan. For those of you who watched it, the three-stage surgery reconstruction they mentioned is what Corey has endured, and will endure. Even though they didn't mention the surgery as the Fontan, that's what it was. That's what Corey will have in a few years.

Watching the show was very difficult for me. When I saw that poor mother hugging her child before giving him up for surgery, I thought, that WAS me, and that will be again. She wondered if she would ever see her child alive again. That's how it was for me when I kissed Corey on the forehead for the last time before leaving the OR. Thoughts raced through my head. Did I kiss he enough? Did I hug him enough? Did I spend enough time with him? Did he know how much I love him? Did we really have to do this RIGHT NOW? Couldn't I just go in there and get him, and just spend one more day with him? One more hour?

Seeing the show brought all those emotions flooding back to me. And it reminded me that we have to do this again. The Fontan is there in the future for us. It's always with me in the back of my mind. I'm thankful, though, that our surgeon, Dr. Vricella, has returned to Hopkins. He saved my child twice before, and there isn't another person in the world who I trust more to save Corey just one more time.

The timing of the show was awful for me as well, because I've managed to work myself into a total funk for today's echo. I can't help but worry about what they will find. My logical side says that Corey is thriving. He's eating anything he can get his little pincher hands on. He loves taco meat and pasta so much that I can barely cut up enough to get onto his tray before he's eaten it all. He's so sweet, and smart, and inquisitive. Everything around him is of interest - it's so amazing to watch him learn about the world through his young innocent eyes. My baby. My own little miracle.

Cardiology appointment for Corey tomorrow....

Tomorrow we have an appointment with Dr. Brenner for an echo. Corey appears to be doing really, really well, so I'm trying not to worry. However, I've learned that you have to expect anything when you take a trip to Hopkins. For example, "Go to the ER. We're doing the shunt." Or, "We're doing the Glenn next week, even though it's the week of your brother's birthday." When we were still in the shunt phase, I started to think I should just pack a bag for us each time we headed up there. It's better now that Corey's post-Glenn, but I still get that knot in my stomach that won't release until they send us home tomorrow.

Here is what I am hoping for: "Everything looks great. No Fontan for at least a couple of years." Please keep a good thought, or say a prayer for my little man, that this is the case. Then we're going to try and drop in on Dr. Vricella, if he can squeeze us in for a few minutes between surgeries. Dr. Vricella tells us that it's good for him to see Corey thriving. The success stories seem to make all the difference to him. It's good for us, too, to know that we have such an amazing, caring team of doctors.

We'll post an update tomorrow!

"Miracle Workers" - April 3rd

April 2nd Update: The episode was delayed one week and will air tomorrow night, April 3rd, where a 4 year old will undergo the Fontan surgery. The Fontan is also the next surgery Corey will have, but hopefully we are still a few years away from that.

Well, it looks like there's some confusion about when the show with the heart child will air. It may be tonight, or it may be next Monday night, April 3rd. The TiVo says tonight, but the website says next Monday, so who knows? I'm planning to record both....

CHD on TV

I pulled the following off of Ewan Kennedy's blog. Ewan also has tricuspid atresia, or HRHS, like Corey. Ewan has had the Glenn, like Corey, and both boys will have the Fontan at some point.

"On the ABC series "Miracle Workers" (think "Extreme Makeover Home Edition" but with medical issues), the next show will feature a child with Hypoplastic Left Heart Syndrome or HLHS. While Ewan has a hypoplastic RIGHT heart, he actually undergoes almost the same surgeries as a child with HLHS. I am guessing this child is having his Fontan since he is 4 years old. Remember Ewan will have his Fontan this summer.

Visit the program's web site for more information and remember to set your Tivo.

href=http://www.abc.go.com/.../index.html

It's in my TiVo, and thanks to the Kennedy family for the tip!