November is a BIG Heart Anniversary Month for Me!!!

There are TWO BIG Heart Anniversaries for me this month. One is coming up this Saturday, November 21st... the 20th Anniversary of my Fontan Procedure, the surgery that gave me a second chance at life! BUT this past November 10th was a BIGGER one for me! I'm SO sorry I didn't post about it sooner, but college is keeping me SO busy with three tests and a huge paper... I thought sense I have about two hours before my class and I start my busy day I would share with you the nightmare, the hell my parent's faced Novemeber 10th, 1987 when I was 11 weeks old... the day of my CHD diagnosis... the day that changed their life and mine FOREVER!!!

At about 6 weeks old my mom started to get worried about me, as I wasn't acting like myself. I became very difficult to feed and I would throw up EVERYTHING I ate like a water foutain my mom said. This worried my dad as well, so my mom took me to my pediatrician. He told my mom that I was just a musicy baby and I was fine. My mom KNEW that SOMETHING was wrong! I started to get a rash all over my body, so my mom took me to the doctor's again and again they said I was fine! I started to have night sweats, so AGAIN my mom took me to the doctor and AGAIN they said I was fine! My amazing mom took me to the doctors EVERY WEEK for 6 WEEKS!!! Then, after the 6th time she brought me home from the doctors, something scared my mom. I started to breath very heavily and was turning blueish gray when I cried. My mom called my dad asking if she should just take me to the ER of the nearest hospital as my doctor thought my mom was just a parnoid mother, but I was my mom's second child plus she was a nurse, so she KNEW something WAS VERY WRONG!!! After talking to my father my mom decided to take me to the ER of the nearest hospital before it was time for my older brother to get out of Kindergarden.

Me at a few weeks old... I think about 8?

As my mom walked through the doors of the ER, ALONE, she had NO IDEA what was going to happen! God must have been watching over me because what happened next as my mom has told me was fate and saved my life. There was a DR. on call in the ER that saw me first and it just so happens he had JUST finished learning about Congenital Heart Defects/Disease in infants and children! He took one look at me and took me from my mother to rush me back for an x-ray, but he already knew what was wrong! He didn't tell my mom right away though... my mom sat in the waiting room alone till a DR. came back to tell her that I was in serve heart failure and I have some short of CHD. That I needed assistance breathing to keep me alive and they had just called an ambulance to take me to Children's Hospital of Michigan ASAP!

My mom called my dad at that moment. Luckly my dad's work wasn't too far away! He dropped what he was doing and came over to comfort my mom! As he got there the ambulance pulled up and the Doctors told my mom she couldn't ride with them because I required too much assistance and that they weren't even sure I would make it the ride to the hospital. My mom said she was in tears! As my parents followed the ambulance, they told me is was surreal and that it was the longest ride of their life! IN THAT MOMENT MY PARENTS WERE LIVING EVERY PARENTS WORST NIGHTMARE>>> HELL!!!

My parents waited for what seemed like forever in the children's hospital waiting room! Finally, my cardiologt, the one I STILL have to this day, came in and told them in the calmest voice ever (as my parents put it) that I was stablized, but very ill! That I have a CHD called Tricuspid Atresia and would require an emergency heart catherization to save my life once he got my parents consent. He talked with them, he was kind, sweet, and caring. He answered questions and supported them... my cardiologist is amazing! The next day I had a heart catherzation to rip a hole in my heart because the one every child is born with had closed like it should, but that was the thing that was keeping me alive! I was put on a few medications and a special formula which consisted of concentrated Isomil with polycose 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 dad feeding me.

My mom tells me it was a grueling task to get me to eat and keep down all my formula. She told me she would put me in my bouncer and try to get me to laugh or smile then she would take the small sireng that she filled with the special formula and put a drop in my mouth and she would make funny faces to make sure I swallowed it. This took about an hour for one ounce and she needed to feed me every hour.

Me in my bouncer with one of the many smiles they
got out of me!

If that wasn’t a big enough task to take care of me and make sure I ate and stayed healthy my parents had my older brother 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. And of course Ryan adored me so it was hard to keep him away from me. I’m not sure how they got through it, it was hard, but they had family members that were willing to help as well. It wasn't easy for them, but they 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.

Cuddling with mommy!

In early February of 1988 I had my first open heart surgery. It was called the Pulmonary Artery banding surgery...

Few days Post-PA Banding.

It was to help the blood flow in my heart and lungs until I was old enough to have the full Fontan. All went well during the surgery. Though it was successful in its purpose it didn’t make it any easier on my parents and family. As one of my grandpas have said to me about seeing my after surgery "It was a sight to see and very scary." Because I was so sick I had about a 20% chance of dying after this surgery. As my parents have told me, hearing any percentage that your child could die is not something you want to hear, but I beat the odds. My parents never lost hope! 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 dangeriously sick with RSV! I was taken to Children's Hospital and admitted. I spent about a month recovering from RSV on lots of medication! My dad tells me my crib has a bubble thingy over it to keep my air clean and for breathing treatments (I wish I remembered the proper name for it, but I forgot). After returning home from recovering everything went well and my parents as well as my older brother ajusted. Ryan LOVED playing with me! We began to be a normal family of four and my parents were felt more confident and comfortable in taking care of me. I had a few bumps in the road along with eye surgery at 18months, but I was HAPPY and I always seemed to SMILE!! The Fontan would be in the near future, but that post is for Saturday!!

My older brother, Ryan, and me.

I HAVE HOPE~FAITH~LOVE... that ONE DAY CHDs will be more publized and researched! That more children will be saved!!! That all newborns have an echo so kids like me and many others don't get diagnosised till later or when it's too late!!! That maybe we can find a way from prevent some of these defects to some kids won't have to live life fighting!!! I will NEVER stop rasing CHD Awareness and I will NEVER stop telling my story!!! SO PLEASE, go to my right side bar and pass on my CHD Awareness Videos! Tell ONE person about CHDs!!! I stand STRONG and will NOT let my CHD prevent me from LIVING and MY HOPE is that THOUSANDS MORE CHDers can GROW UP like me and LIVE and DREAM and HAVE A FUTURE!!! I KNOW God sent me here for a reason, so I will use my VOICE for those who CAN'T speak!!!

"Thank You" for reading and for ALL the wonderful messages, much heard prayers, and e-mails! They really do mean A LOT to me and put a smile on my face! I'm sorry I'm behind on reading blogs, leaving comments, answering e-mails, and posting, please know I haven't forgotten any of you! College is really taking alot of my time right now as the semester is slowing coming to an end and I need to focus! BUT I think of ALL of you and pray for ALL of you everyday!

May God Bless, Comfort, and Guide you on your Journey! Sending ALL of you WARM **Heart Hugs**!

With LOTS of Hope, Love, and Faith,
♥

2010 CHD Awareness Calendar

Hello! First off, I just want to say a HUGE "Thank You" for all the prayers and support from my blog community, especiall with going and visiting baby Sam's caringbridge site! Thank You! You guys are amazing!

Secondly, a big "Thank You" to all that have prayed for me, especially about my finding an H1N1 shot. I'm happy to say that I found one and got H1N1 vaccinated on Thursday morning! =D I'm VERY relieved! So, "Thank You"!!! You guy are SO SO sweet!!

NOW...

The 2010 CHD Awareness Calendar!!!! A wonderful photographer photographed me in April of this year for her CHD Awareness Calendar that she was doing. This is her first year doing something like this, but I must say the calendar turned out amazing and she is an awesome photographer!!! Her name is Kimberly Coombs and her regular website is: http://www.coombsphotography.net/

I'm the month of August in the calender... here is my picture which most of you have probably seen at the bottom of my blog.

The CHD Awareness Calendar was dedicated to a very special little boy named Ethan who earned his angel wings this past May at just 8 1/2 yrs. old (he had HLHS). I only met him once, but he touched so many lives, he continues to inspire many! Ethan is May in the calendar:

The Calendars are $20 each and all the money will go to an Organization called Hearts of Hope SE MI which helps families affect by CHDs get the support they need. Here is their website if you'd like to visit them: http://www.heartsofhopemi.org/

Here is the link if you'd like to purchase one:

http://www.imagequix.com/photog.php?id=C9PZL9Y&ec=2010

That's it for now, have to get back to homework. College has been keeping me really busy! Hopefully I have time for a post and to catch up on reading blogs soon! Just know I'm praying for SO many! There is not a day that goes by that I don't have some amazing child/adult on my mind! May God comfort, guide and bless you on your journey!

With LOTS of Hope, Love, and Faith,
♥

P.S. Baby Sam (HLHS) will be born over a month early next week because his heart is looking too concerning to the doctors. Please, keep baby Sam and his family in your prayer during this very difficult time. Thank You! http://www.caringbridge.org/visit/babyowens

CALLING ALL HEART PARENTS!!!!

I just come accross a heart family that needs your support and prayers! They are expecting there fourth baby in December, a little boy named Sam who will be born with HypoPlastic Left Heart Syndrome! BUT despite their heart aching right now, their second child, Matthew, who is nine has a serve CHD and has already had 3 open heart surgeries in his life time so far. I DO NOT know this family, I came accross them by accident through youtube, but they NEED PRAYERS and SUPPORT as they ENDURE yet ANOTHER Child go through the toughest battle of their life!!!

I hope the don't mind me sharing their caringbridge link.

Baby Sam's Link: http://www.caringbridge.org/visit/babyowens
Older Brother, Matthew's, Link: http://www.caringbridge.org/visit/mattowens

ALSO: Baby Stellan came through his cardiac ablation with flying colors and is now SVT FREE!!! =D (his link is under my CHD families)

THANK YOU!!!

With LOTS of Hope, Love, and Faith,
♥

Answers to your Questions Part 2!!!

Here are some of the Answers to Questions I have recieved from all you wonderful Heart Parents! Please, if you have any questions for me just leave me a message or e-mail me at: lceleskey 87@ gm ail.com (just delete the spaces in my e-mail... I had to do the spaces to keep from computer robots sending me spam) and I will answer them in a future post! =D


Q: When did you realize that you were different from the other kids (as far as your limitations go)? I am sure that your mom did an excellent job letting you know of your condition and limitations but when did it really hit you?

A: First off, my mom did an awesome job of telling me about my CHD and my limitations. She always gave me just enough information at the appropriate ages at the right times. Though, when it came to gym class activities, playground fun, or having fun with my friends she never told me that I could not do something because of my Heart Condition. My mom ALWAYS told my to listen to me body, if I don't think I can do it then don't or when I get tired STOP. She also told me that when something doesn't feel right TELL someone RIGHT AWAY! I still follow these rules today. These rules made me feel more like I could be a normal kid, but gave me the understanding that I was responible for my body as I'm the only one that can feel what's going on and when something is wrong then I should do something about it right away.

I realized I was different early on in elementary school, probably as young as 5 or 6 years old, but I didn’t have a full understanding or grasp on my condition and limitations. I'd say I was in about 3rd grade or about 8 years old when I knew the limitations of my Heart Condition made me different from other kids, which was hard to fully accept. It would be tough on any young kid. Though the realities of my CHD really hit me when I was 16 years old when I woke up early one moring during the summer itching, A LOT. I thought it was a lot of mosquito bites as mosquito’s love me (I can swell up sometimes) and I had been outside in the after humid damp rain the night before. I quickly realized that I didn’t have a lot of mosquito bites, I had hives ALL over my body. I cried myself back to sleep sitting up in my bed, I was scared. My mom found me hours later and she knew that something was wrong. The hives were so bad! They were on my joints so it was hard to move and on the bottom of my feet, so hard to walk and everywhere else you can think of. In those moments of the early morning is when it hit me that my health can change on a dime. I finally understood the realities of my heart condition. Luckly, after three months of a strong steroid and being watched carefully, especially since I had to be taken off my heart medications, I was fine and the hives have never come back. They never did find out how I got them, I was tested for just about everything and nothing was found, a mystery it was, but an experience that changed my life.


Q: Has God always played a large role in your life?

A: Yes, he has. I look to him all the time to help give me strength. I was raised in a Roman Catholic family and went to a private school through high school. I don’t agree on everything thing in the Catholic religion, but I have always believed in God and good values. God is great and knowing he is here with me makes everything seem ok. I’m not perfect though and I have strayed from him from time to time and still do, but I know in the back of my mind and in my heart that God is the reason I’m here and I will spread the messages he wanted me to through my special heart. I truly believe God is the maker of heaven and earth; he makes no mistakes... everything has a reason.


Q: Are your eye muscle disease/surgeries linked to CHD?

A: Yes and no. My grandpa has the same eye muscle disease and had 2-3 surgeries himself growing up to fix it. My mom also has a less serve form it as well. But most CHDers come with other issues, especially if their heart disease is complex like mine, though that’s not always the case. The doctors and my family think it is a mix of both genetics and my CHD that I ended up with an eye muscle disease.


Q: I would like to know if your older brother ever resented or felt left out because of your heart condition.

A: That’s a hard one to answer as I’m not my older brother. He was 4 1/2 when I was born and I know he was excited to have a little sister. My parents said he had a hard time when I was in and out of the hospital because he didn’t understand why I was there and why he could see me or mommy and daddy all the time. As I got older we had good and bad times like any other siblings. He did always hate that I got more attention sometimes and that my parents listened to me more than him when we got in a fight. My parents tried their best to give him everything he needed and attention too. They always made sure to spend some kind of one on one time with him. My dad did sports with him and as I got older they did a lot more together then my dad and I did, but they are boys, I understand. My brother says he doesn’t resent me at all and though it was tough at the beinging when I was born, as I got older and medically stable, we were like any other family for the most part. He is now a daddy to a little girl and I know he will be a great dad! As for my little brother, I was 11 when he was born so he never really had to go through anything my older brother did. My little brother knows I have a heart condition, but has never felt left out or anything. He has been treated almost like an only child because my older brother and I were almost grown when he came along.


That's it for right now... looks like there will be a Part 3!!! That will be coming SOON!!!
Hope everyone had a Happy Halloween!!! =D
Sending prayers and warm **Heart Hugs** to Everyone!!!


With LOTS Hope, Love, and Faith,
♥