Tuesday, February 19, 2013

Cardiac Checkup Update

don't you?  :)

Eli had a cardiac checkup today, complete with echocardiogram (ultrasound of the heart and vessels) and EKG (shows the electrical activity/rhythm of the heart).  He did pretty well for the echo (I'm sure the Ibuprofen and Benadryl I gave him in the parking lot had nothing to do with his cooperation).  It takes a long time for them to get all the right views they want since his anatomy has changed so much because of the defects and two surgeries.  He didn't throw a fit until the last 15-20 minutes.  I was really proud of him!

We took a break during the echo and Eli was NOT happy about getting back on the table to resume the test.  You can see my bribery on the table:  Bottle, cut up grapes, apple slices, and Goldfish.  It didn't work.

Once we got in the doctor's office, they did an EKG.  It showed he is still in the junctional rhythm.  That was a surprise to no one.  Frankly, if he converted on his own after being in this rhythm for the last year and a half, that would surprise people. 

When we saw Dr. Kumbar (Evansville cardiologist) she did a thorough exam (listening to his heart and lungs, feeling for pulses in his groin & feet, and palpating his abdomen to check his liver).  She noted his color (blueish) and started asking questions about his health since we'd last seen her. 

Eli with Dr. Deepa Kumbar.  She's the pediatric cardiologist who initially diagnosed him in January 2011.  We get to see her for most of our follow ups so we don't have to go to Indy as often. 

His echo had nothing surprising on it.  There's some deterioration or decrease in some areas they look at, but it's expected and not alarming.  We've known for a while he has mitral valve regurgitation (the mitral valve is the valve between the upper & lower chambers on the left side of his heart).  The left side of Eli's heart has to do most of the work of his whole heart since the right half isn't functional.  That's a lot of blood to pump along and regurgitation means that instead of flowing from the top chamber to the bottom, there's some "backflow" from the bottom to the top.  This is somewhat expected with his defects but is still something to monitor and take care of as needed.  About a year ago his regurgitation classification was changed from "mild" to "moderate" meaning it was getting worse.  Today's echo showed the regurgitation was about the same as his last echo. 

Overall, she sees a little boy who has had good weight gain, who is consistently blue around the lips and fingers indicating a decrease in his oxygen saturation levels, and whose activity level is slightly affected by his decreasing heart function.  All this leads her to believe his Fontan will be done within the next couple months.  She will send today's testing and her notes to Drs Parikh (main Indy cardiologist) and Abraham (surgeon) for them to review.  She expects we should hear from them within a week or so regarding scheduling. 

I can't say it was a good appointment, but it definitely wasn't bad.  We didn't hear anything we didn't expect, so I guess that was good.  We'll post more when we hear from Indy about scheduling.

If you haven't been reading our blog lately, we are currently selling tshirts and sweatshirts with an "Eli's MVPs" logo on the front.  They are available in three colors each.  To read the blog post describing our fundraiser, click here.  We are asking everyone who orders a shirt to wear it the day of Eli's next surgery as part of a "Pray for Eli" day.  We've had a wonderful response, but of course we want to sell more!  Thank you to everyone who has already ordered!  If you want to order, you can contact us via our personal Facebook pages, Eli's MVPs Facebook page, or by emailing us at elismvps@yahoo.com. 

Keep praying for him as we enter this next stage of surgery preparation!  THANK YOU!!!

Wednesday, February 13, 2013

Eli's MVPs

Again, I'm very excited.  We have started a Facebook page dedicated to Eli, updates about his health, and CHD Awareness.  It's called "Eli's MVPs", and we are very proud to ask all of you to become one of Eli's Most Valuable People.  We are so grateful for the support you've given us since his initial diagnosis.  We really don't know what we'd do without it.  If you're on Facebook and haven't "liked" our page yet, please do so by clicking here.

If you remember, last year we were the Ambassador Family for the Daviess County March of Dimes.  We put a lot of pressure on ourselves to come up with the "perfect" team name.  We wanted it to center around Eli and yet include everyone who has helped us.  You know, the whole "it takes a village" attitude.  Bryan suggested Eli's MVPs (meaning Most Valuable People).  It was perfect.  It tied in with sports, which is a big part of our lives.  More importantly, it honored those who have helped us so much by praying, offering an encouraging word, and many, many other gestures.  We also decided that name wouldn't be solely for the MoD team, it was for Eli and anything we chose to do to benefit him or increase CHD Awareness.

Over the last two years I've lost count of how many times we've been asked "What do you need?  What can I do?"  Most of the time our only answer was to ask for prayers.  We're still asking for those and that request will never stop.  We've recently been thinking more and more about Eli's future.  We're finally able to see that he may have a future.  We are fully aware of the challenges he faces, but we've come to realize that more and more heart babies are living to adulthood (with or without a transplant).  Granted, Eli's defects are one of the most severe combinations of CHDs, but even with that he still has a chance to grow up.  We've come to realize that we need to get serious about helping Eli through his future.  If he lives to adulthood, he will have a lot of expenses.  He may not be able to work a full-time job.  He may not qualify for health insurance.  He may have a job, but will have to take a lot of time off for medical procedures and testing.  A simple cold could put him out of work for a lot longer than the rest of us.  He may not be able to pay his bills.  The future isn't certain for anyone, but for a guy with half a heart it's even less certain.

We want to start a fund for Eli's medical expenses.  Our goal is that it is something he can draw from as an adult, but if need be we can draw from it before then for his expenses.  Did you know that the cost for inpatient surgery for CHD patients exceeds $2.2 billion annually?  In just over two years, Eli alone has accumulated almost $2 million in medical expenses.  He has a long road ahead of him, and we want to help him by making it easier. 

 So, all of you who have ever asked what you can do to help, here you go:  Become one of Eli's MVPs.  We are doing our first-ever fundraiser for Eli.  We've had a lot of compliments on the shirts we got for MoD, so we're starting with that.  We are selling tshirts and hooded sweatshirts with the Eli's MVPs logo on the front of them. 

This is our lovely model.  He even held the shirt out so you can see most of the design.  FYI:  Drool spot not included, but if you're really interested we can work something out.

You can't see the full logo here, but how could I not include this cheesy smile?!?
Here's the info:

Tshirts are offered in these three colors


Sizes available are Youth XS - L and Adult S - 5XL
Prices:  $15 for all youth sizes and adult up to XL, $17 for adult 2XL and up

Hooded sweatshirts are in these three colors
Antique Sapphire


Sizes available for Kiwi and Charcoal colors are Youth S - XL and Adult S - 5XL
***Antique Sapphire is only available in Adult S - 5XL, no youth sizes***
Prices:  $25 for all youth sizes and adult up to XL, $27 for adult 2XL and up

We are getting these shirts from Garland Graphics here in Washington.  That's who did our shirts last year, and we have been very happy with the product.  Personally, I wear mine two or three times a month, and it has held up very well.  I don't see any signs of fading and the seams are still intact.  This has been a quality garment, so we are expecting the same this time around.

Once we have Eli's next surgery date set, we are going to ask everyone who purchases a shirt or sweatshirt to wear them on that day as a symbol of support for our little fighter.

If you want to order one, we do need payment before we can place the order.  Cash and checks made out to Bryan &/or Jessica Veale are accepted.  We are looking into taking payments via PayPal, but as of now that is not an option.  To order, contact us on Facebook through our personal pages or through Eli's MVPs page.  You may also contact us by email at elismvps@yahoo.com with your order or any questions you have.

Thank you, Thank you, THANK YOU for helping!

Tuesday, February 12, 2013

Featuring Lauren

As a parent whose child has "half a heart" you can't help but worry about the future.  Will there be a future?  I've wondered if Eli will live to go to kindergarten, get a driver's license, go to prom, attend college, get married, and many other life events.  If he does live to experience those things, what quality of life will he have at that point?  There are so many unknowns.  Of course every person with CHD is different. Because of so many advances in the field of pediatric cardiology, babies born with CHDs have a much higher rate of survival to adulthood than they did even 15 years ago.  That gives me hope for Eli's future.  Cautiously guarded hope, but hope nonetheless.  

As we've gotten deeper into the world of Congenital Heart Defects we have heard more and more stories (mostly good, some with sad endings too soon).  One person I was immediately intrigued by is named Lauren.  She's a 25 year old married college graduate who lives with half a heart.  She and Eli have similar defects and Lauren has become a very important part of raising awareness for the CHD world.  I asked her if I could feature her story on our blog and she was happy to provide her story along with some photos.  We have no idea what Eli's future will be.  There are no guarantees in life, especially a CHDers life, but learning about Lauren and her accomplishments help us realize that it's okay for us to expect Eli to "grow up."

Here's Lauren's story as told by Lauren and her mother:
I was born in August of 1987, supposedly a healthy baby girl. I was taken home and thrived.  A few weeks after coming home I started to display some things that worried my parents.  I was throwing up everything I ate and was developing a rash all over my body.  My mom took me to my pediatrician and they told her “I was fine”.  My mom knew I wasn’t.  Not only was I her second child, but my mom was a dietitian and had some medical knowledge; she knew something was wrong.  My mom took me to the pediatrician’s once a week for 6 weeks, yet the doctors still insisted I was fine, just a mucousy baby.  One morning when I was 10-11 weeks old my mom found that I was breathing very heavy and turning bluish-gray around my mouth.  She took me to my pediatrician again and told them to call the nearest hospital for me to have tests done.  My pediatrician and a nurse checked me over, again… this time they heard a murmur so finally they agreed I needed testing done.  I was rushed to the nearest ER and an on call intern who looked at me first just had learned all about Congenital Heart Defects, so he knew it was most likely my heart.  I was taken to get a chest x-rays and when he came back said that my heart was very enlarged and most of the right side of my heart was missing.  Children’s Hospital was called and an ambulance got ready to take me.  Once my mom was told what was going on she called my dad who came from work right away as well as my grandparents.  My mom was not allowed to ride in the ambulance due to not enough room.  They told my parents I was in severe heart failure and they didn’t know if I’d make it to the hospital.  My parents had been thrown into every parent’s WORST nightmare!!

I made it to the hospital and was stabilized.  My cardiologist (well the one I had the first 22 years of my life), told my parents I have a Congenital Heart Defect called Tricuspid Atresia, Hypoplastic Right Ventricle (which simply means I only had one working ventricle (my left) or half a working heart) and that I had to have an emergency heart cauterization to re-rip a hole in my heart so blood could flow better.   My cardiologist was kind and caring to my parents.  I was sent home a few days later on a few medications and a special formula which consisted of concentrated Isomil with polycose added (basically formula with tons of calories/fat added) so I could gain weight as I needed to be at least ten pounds for my first open heart surgery which I would have between 3-6 months of age!  My mom tells me it was a grueling task to get me to eat and keep down all my formula.  She told me it took about an hour for one ounce and she needed to feed me every hour with a syringe.  I still very sick and due to a late diagnosis my Pulmonary Artery was about 3-4 times the size it should be, but could not be fixed till I was stronger.  That Pulmonary Artery could have popped at any time before my first open heart surgery and would have killed me.  Looking at pictures you would never know how sick I was.  If that wasn’t a big enough task to take care of me, my parents had my older brother, Ryan, to look after who at the time was only 4 1/2years old and carried a lot of germs that could make me very sick.  Of course Ryan adored me so it was hard to keep him away from me.  It wasn't easy for them, but they had family to help out and support them.  My parents kept strong for me and held onto faith that I would be ok.  My parents didn't want to accept that something might happen to me.

My mom, Suzanne, and I on my 1st birthday

In early February of 1988 I had my first open heart surgery called the Pulmonary Artery banding.  It was to help the blood flow in my heart and lungs until I was old enough to have a procedure called the Fontan.  The surgery went well.  Though it was successful in its purpose it didn’t make it any easier on my parents and family.  I was still a sick little baby, but my parents never lost hope that I would be ok!  As for complications, I had one code blue called during my 10 day recovery because I pulled out my breathing tube, but after that all was well!  Soon after returning home I got dangerously sick with RSV!  I was taken back to Children's Hospital and admitted.  I spent a few weeks recovering from RSV on lots of medication.  After returning home from recovering, everything went well and my parents as well as my older brother adjusted.  I was born with other medical issues, one is an eye muscle disease called Estropia (“Crossed Eyes”), I did patch therapy as a baby and then had my first eye muscle surgery at 18 months old; which was during the time in between my two open heart surgeries.  Despite everything, I was a happy baby and smiled a lot!

On November 21, 1989, my parents handed me over to the doctors for my second and riskiest open heart surgery, the Modified Fontan.  It had only been a month before during a heart cauterization that I developed a blood clot in my right leg and scared my parents, now it was one of the biggest days for them and for me.  The Fontan was a surgery still a fairly new operation (about 15yrs old).  This surgery was either going save my life, take my life, or have my parents looking for other options and my parents knew that all too well.  About a 50-60% chance of me surviving with my specific case was what the doctors bluntly told my parents, but my parents hung onto all positives.  My parents had a lot of faith in the doctors and God that I would come out ok. I cameout of surgery ok, I was alive!  As far as complications that I had from this surgery, I had a chest tube issue (they had to put it back in while my parents held me down as they didn’t have enough nurses around at the time), a SVT/very fast heart rate scare where I coded, a pacemaker scare (never got one though, I'm very grateful for that) and I was put on a special diet (medium chain triglyceride diet).  All things considered, I did pretty well with recovery.  I was discharged from the hospital exactly one month after my surgery which was four days before Christmas 1989.  My family had every reason to celebrate.  I did too!  I got out my mom’s lotion the day I got home and went to town putting it all over myself. I was happy and alive.  What more could my parents and family want?
Me, age 2, recovering from my Fontan

After that second surgery I was as healthy you can be having severe heart condition or “half a heart”.  I had years in between the second surgery and any minor concerns.  I went to my cardiologist once a year and was on a few medications, other than that I was doing great.  I had another eye muscle surgery when I was 8, I got four stitches in the my bottom lip from getting hit be a swing when I was 8.

I got a little brother, named Aaron, when I was 11 years old and that was wonderful; I'd hold him as much as I could.  Aaron and I are very close.  When I was six my mom got me into acting classes; she signed me up to the family theater in our city.  I was in plays till I was twelve when the family theatre group closed.  I enjoyed being on stage and it made me feel on top of the world.  It is something I will always remember; even my mom was in the plays with me!  For my parents and family to see me up on stage happy and alive was so extremely exciting for them.  I bowled, started at age 5, which I loved and years later I ended up being on my high school girls varsity bowling team.  I enjoyed playing with my little brother, Aaron, as well as watching my older brother, Ryan’s, basketball and baseball games.  Both my brothers have always been loving and supportive to me.

I was a pretty “normal” child and teenager in most aspects (I did have some limitations though) and for the most part I was a very happy child that loved to talk, to people I knew anyways (I was shy around people I didn't know).  Socially I had some trouble and got teased a lot (I was shy, had glasses, couldn’t keep up with other kids during gym/recess and was not allowed to play contact sports), but I did end up making a friend or two which is all I really needed to be happy.  Even in tough times I tried to have a positive outlook and have a smile on my face.  I loved to write and still do, I have always enjoyed talking, and many of the simple things in life.  Unless you knew I had a severe heart condition, than you probably could not tell other than the scars on my chest.  My parents were open and honest about my heart my whole life, even when I was young.  They always explained things to me in age appropriate ways and only what I needed to know.  My mom would always tell me to listen to my body, if I was tired in an activity then stop or if I didn’t feel right then tell someone right away.  I became very good at this.  Though by age 10, I knew the name of my heart condition, that I’ve had open heart surgeries, what medications I take, etc, but I just did not know the all the seriousness of it.  My parents always supported and encouraged me.  They always would let me know how special I was and God had big plans for me.  I'm very grateful my parents gave me a pretty “normal” childhood. 

At age 14 I was diagnosed with yet another medical issue, congenital scoliosis, meaning I was born with an extra vertebrae in my back and hips not aligned that caused mild to moderate scoliosis of my back.  My back is monitored, but because of my heart, not much can be done.  I can get bad back pain, but it something I live with and I try not to have it get in the way of living my life.

It wasn’t till the summer I turned 16 where my health changed for me; it was a turning point so to speak.  I broke out into hives all over my body for no reason early one morning and I was so scared.  I remember going from doctor to doctor and even my cardiologist, getting my blood taken, getting my heart looked at, everything to find out what was wrong.  I was in so much pain because the hives were on my joints too and it was hard to move.  Finally, after three months of steroids, being off my heart medications, and being watched 24/7, the hives went away and to this day no one has a clue what happened.  From then I realized that anything can happen and I was so grateful and blessed for what I have.  I held onto my faith in God, but there were times I questioned everything (and I still do sometimes), but I try to find peace.  Since then life has not been easy for me, but it certainly can be worse and I don’t take a thing for granted.

I was diagnosed with exercise and stress induced SuperaVentricular Tachycardia (SVT’s aka very fast heart rate), when I was 18 and I’m on a low dose of a beta-blocker for that (which calms the vessels in my heart so it doesn’t race).  When I first got the symptoms of the SVT’s it was scary for me.  I had night sweats, bad chest pain, hard to breathe, and harder to do daily activates.  I was so scared that I didn’t even tell my parents right away, I know now that I should have and I should ALWAYS tell someone if something isn’t right, but it was hard for me to accept that something was wrong.  Since the beta-blockers I have been SO much better, but I still struggle with on and off chest pain.  It can get frustrating, but I deal with it the best way I can.  Since then, I’ve also been diagnosed with muscle spasms (a year ago), mostly on the left side of my body that is usually stress or anxiety induced.  I had my third eye surgery in July of 2008 and all went well.  I’ve had one trip to the ER of Children’s in July of 2009 due to bad food poisoning.  Since 2010, I've been having issues with weird heart beats and some minor heart rate issues, I wore a 30 day heart monitor in September 2011 and it didn't find anything too concerning, just some non harmful palpitations.

Every day I have little reminders that I have a CHD; from my scars to my medications to my on and off pain to getting tired easily.  They remind me that each day I’m ever so blessed and grateful to be alive.  These reminders also keep fear with me, fear of the unknown and worry, things that are so hard to push completely out of my mind.  This CHD has impacted my personality in many ways.  My CHD has helped in my very emotional personality, my stubbornness, my bluntness about things, my kindness, and my care for others.  It has taught me to be more understanding of people around me, has taught me not to take life for granted, to love the people you care about with all you heart, and to enjoy the simple things in life.  It has given me a motivation to help others and to always have faith.  I’m thankful for my life; I’ve been very blessed in so many ways.  I have two parents who have done SO much for me over the years to bring me to this point in my life, they fought so hard to get me here healthy and happy.  For that I will always be eternally grateful to my parents, I love them VERY much!!  I also have a wonderful family including two grandparents, two brothers, and a niece who I love dearly!!  I also have an amazing husband, named Christopher, whom I love so much!!  Chris is my rock and best friend.  I also achieved my goal of graduating college!  I graduated college with a BA in Psychology in 2011.  I have big plans for my future including publishing my own book.  Though I have a tendency to think negatively sometimes, I’ve been trying my hardest to think more positively!
My husband, Chris, and I...Nov. 2012
I will keep spreading CHD Awareness and telling my story!!  I have LOTS of Hope that ONE DAY CHDs will be more publicized and researched so that more children will be saved!!  My CHD will never go away, but I will take what I can from it and keep living my life to the fullest with lots of smiles, laughs, love, and special memories.  I try not to let me CHD define me because I’m so much more than a CHD. I LOVE my life and I consider my mended heart a gift!!

How awesome is she?  Lauren has a Facebook page she updates regularly and provides a lot of information about CHDs.  Click here to get to her FB page.  Thanks, Lauren, for sharing your amazing story and positive attitude with us.  Keep up the great work!

Friday, February 8, 2013

It's Official (and I'm so EXCITED!)

No, we're not expecting another baby.  I knew some of you would think that because of the title, but I kept it because it got you to check the blog, didn't it? 

A very exciting thing happened when I went to the mailbox yesterday.  There was an envelope for ME!  Bryan & the boys usually get all the good stuff, but this had my name on it and it wasn't a bill.  It was from the Governor's office.   


It was a signed copy of a proclamation declaring Feb 7-14, 2013 to be recognized as CHD Awareness Week in Indiana :)  I'm so happy!!!!

Eli hugging the proclamation from our Governor's office.  The copy was already creased from the mail so why not let him hug it?  He's the reason we got it done!

Here are some facts about Congenital Heart Defects:

♥  One in one hundred babies born in the US will have a congenital heart defect. That translates to nearly 40,000 babies each year in the US alone. 

♥ 1 in 100?  Yes, really.  Our local hospital (Daviess Community Hospital) reported just over 500 births in 2012.  That means FIVE babies with some type of a CHD were born at DCH last year alone.  

♥  Because the heart is formed so early in pregnancy, the defects are often present before most women know they are pregnant.

Our Request:  

♥ Learn something new about CHDs every day this week and share that information with someone else. We need your help to spread awareness. ♥

Thursday, February 7, 2013

Congenital Heart Defect Awareness Week!!

Congenital Heart Defect Awareness Week is February 7th - 14, 2013!  Obviously that's something very important to our family.  Be honest, until Eli was diagnosed & you got information about him, how much did you really know about congenital heart defects?  We didn't know much.  We had no idea how often they occurred, how much they affect the whole family, how much they cost us, and had no idea these kids could be as strong as they are.  Now we know.  And we're still learning.

To celebrate CHD Awareness Week we're doing a lot of things.  First thing we did was get a proclamation from the mayor of Washington, Indiana recognizing this week as CHD Awareness Week in our city.  I attempted to get one from the State of Indiana, but they require notification 6-8 weeks prior and my request wasn't in time.  I submitted it anyway, but haven't heard anything about 2013.  Now I know what to do for 2014!!!!

The four of us receiving the proclamation from Mayor Wellman.  Thank you, Mayor and City of Washington!

We also created some fliers that contain a lot of information about CHDs.  It explains what they are, some statistics, ways to help, and also includes our story although we didn't identify ourselves.  We did that because we want these fliers to be about CHD info, not about the Veale family.  The fliers are at several places of business throughout Washington.  A big thank you goes out to Craney's Body Shop, Senior and Family Services, Cullen Medical, Old National Bank (east branch), Dr. James L Simpson, DDS, Daviess County Abstract Company, Exhaust Works, Knickers & Petticoats, Mi Pueblo, Tara's Day Salon, and Wichman's Landscaping for letting us leave the fliers for their customers to see.

We submitted a copy of the proclamation, the photo of us receiving the proclamation, and the informational flier to the Washington Times Herald in hopes they will print something during the week.  We haven't heard anything from them about how, when, or if the information will be used, but we're hopeful of their support for CHD Awareness Week.

On Wednesday, February 13, Bryan and I will be on a local radio show to talk about Eli and CHD Awareness Week.  We'll be on WAMW's Take 5 for Your Community with DeWayne Shake.  I think we're both a little nervous about that!  We'll get through it though because it's only 5 minutes & it's for a wonderful cause!

If you're a follower of our blog, you may have noticed a different background, layout, colors, and photo additions.  I was so excited when I found this heart background to use and it didn't look too "girly" for my testosterone-laden family.  Another thing we're working on is a Facebook page for Eli's MVPs.  I'll post more about that later (mainly because I'm still trying to figure it out myself!).  Our intention is to use that for a quicker way to update family and friends about things we wouldn't necessarily blog about.  We'll also have some information about a fundraiser for Eli's MVPs, so all of you who keep asking what you can do to help will find out a way very soon!

Some CHD families are promoting this week of awareness by sharing fellow heart families blogs and/or Facebook pages, so we may have some new readers here.  If you're new, thank you for checking in on us!  Here's a little background on our family:  Bryan and I married in 1999.  In 2007 we were blessed with Zachary Glen.  In 2010 we had another blessing join our family, Eli Mark.  Both pregnancies were normal, both labor & deliveries were normal (not EASY! but normal).  When Eli went for his two month check up, Bryan and I had a list of things that we were concerned about.  Individually each item didn't seem like a big deal, but combined we knew something wasn't right.  When they weighed him, we found out he had lost weight and was actually below birth weight.  The next 24 hours were crazy as he was admitted to three different hospitals as we began to unravel the puzzle he presented.  Our final destination was Peyton Manning Children's Hospital at St. Vincent in Indianapolis.  We were told he has multiple heart defects.  We didn't have many options.  His condition was quickly deteriorating so the only thing the doctors could recommend was surgery.  He underwent his first open heart surgery (a modified Norwood) on Jan 10, 2011.  He had a 30% chance of not making it out of the OR and if he did live through surgery it was expected he'd be on a heart-lung bypass machine.  He made it through surgery and was NOT on bypass.  We were elated!  Our sweet little boy was alive and doing better than anyone could have imagined.  We still don't know how he made it though the first ten weeks of his life without being diagnosed, but we are so incredibly grateful that he did.  Eli had a feeding tube placed on Valentine's Day 2011 and his next surgery, the Glenn, was September 1, 2011.  He did very well from that.  We are now about to begin echos, EKGs, etc to start preparation for his Fontan.  As of now his sats are in the mid 70s so if we were betting, his surgery will be this spring, although it could be as late as summer.  He will also have a pacemaker placed during his Fontan because he's been in a junctional rhythm since his Glenn.  He has been though speech, physical and occupational therapies, although we do not need to utilize any of those services at this time.  He's a busy two year old who adores his big brother, likes to play ball, and is fascinated with trucks, trains, Elmo and Pablo (from the Backyardigans).  To read the full version of the beginnings of our story click here.  If you want to read more specifics about his heart defects and his surgeries click here.  If you want to know how his feeding tube works click here.

Thanks for reading and caring about us.  We'll be posting more this week to increase Awareness about Congenital Heart Defects!