Sunday, December 27, 2009

Not So Great Christmas...

...SO... my Christmas and semester break hasn't been going so well. Around 10pm on Christmas Eve, after enjoying my family get together, I got food posioning either from the Panera Bread food or Starbucks smoothie I had earlier that day. I was in and out of the bathroom all night... threw up alot and it was the first time I had thrown up in about 9yrs... so yea that wasn't fun. I couldn't go with my boyfriend to his family get together. I spend 99% of Christmas Day in bed and feeling ill. I do feel blessed to have had my mom to attend to me as well as my boyfriend who was up all night with me when I was throwning up. They are both awesome! I felt blessed! I did get alot of nice things for Christmas and I'm very thankful. I'm still recovering from the food posioning though, but doing better.

I have other things on my mind. I wrote a note to my cardiologist about some GI issues that came up with me again today, so I could use some prayers as I'm trying not to freak out. See, back in July I got food posioning so bad I went to the ER... I was bleeding alot from my behind. It all stopped and nothing else came up and my cardio wasn't concerned. My cardio did give me a number to a GI doctor just in case something did come up... I called the GI office in Oct because even though nothing had come up I thought I'd get checked anyways. The office said I couldn't get in till Feb of 2010, so I e-mailed my cardio... long stoy short I let the whole thing go because I don't have money to pay for another medical bill, I'm already behind because I have NO MONEY! BUT today I saw two spots of blood, thus I e-mailed my cardio and I'm trying not to freak out. I'm thanking God it is not bleeding bleeding like in July. Please, prayers would be nice. Thank you SO much!

I also thought I had a OB/GYN appointment for the yearly women check and blood draw for my cardio on Wed... guess I don't because I got a letter last month that I didn't read all the way through saying I have to reschedule. I wish they would have called, Ugh! Added on to that, I got a bill from my Health Insurance saying I need to pay for next month, but I already paid. Looks like I'm going to have to call them tomorrow, Ugh!

Does it ever end?!?!? I'm abit stressed, but doing alright.

GOOD NEWS: I have an awesome family family and boyfriend. I'm on break from school. I will be speaking at a new CHD organization near me called "It's My Heart" on Tuesday night. I'm feeling better! Looking at the positive!

Anyways, I have a lot of kiddos/adults on my mind like I always do, but one is going to be on my mind alot this week and that's Logan. Logan is going to have a risky heart cath this Wednesday... this heart cath could by him time before his next heart surgery or make is come faster. Please pray for his parents, Stef and Ryan, as well as precious Logan. Here is there blog if you want to leave them messages of support. www.whenlifehandsyouabrokenheart.blogspot.com

Thank You for ALL the wonderful messages of support and prayers! They always mean alot to me! ♥

Well, I'm going to watch some TV and then a movie when my boyfriend comes back from blockbuster... need to get my mind off of things and realize that I'm going to be ok. God is watching over me and I have lots of support from loved ones including you guys! I'll get through whatever comes me way! =D

With LOTS of Hope, Love, and Faith,


P.S.: Still needing pictures and info for my 3rd CHD Montage... please send them to:
Sweeetie 2516 (at) Aol (dot) com (you can look at the previous post to see what I need). Thank You! =D

Tuesday, December 22, 2009

Tag Award and Before Christmas Update!!!

I have a bunch of stuff to say, but first off I recieved the "Tag" Award from Stephanie at With a Hopeful Heart and Jessica at Ethin's Heart Still Beats. I'm suppose to share 7 things that you may not know about me, which will be hard as I share alot. Then, I'm suppose to "Tag" some people. Here it goes...


1.) I have an anxiety disorder which can keep me on the negative side of things some days along with stressing me out... you may not know that because I don't let most people know and I try my hardest to stay on the postive side of things.

2.) My parents got a divorce 4yrs. ago and they are each in a relationship with someone which took me a bit of time to get use to, but I like Judy (my dad's gf, my bf's aunt) and Jeff (my mom's bf).

3.) I love to wear crazy looking knee socks in the winter time... not only are they cute, but they keep my legs warm.

4.) My mom went to college to be a dietichen, which came in handy when I was born and diagnosised with a complex CHD.

5.) My wonderful little brother and I are 11yrs. apart... it was a big ajustment to going from baby of the family to semi-middle (I don't really consider myself the middle child as we are so far apart in age). I love my little brother, Aaron, so much that it was worth loosing my baby spot in the family.

6.) I was 19 when I got my drivers liscence because I was scared of driving, still kind of am. I don't have my own car so I usually don't drive much.

7.) I got 6 stiches in my bottom right lip when I was 7yrs. old from getting hit by a swing... someone was on the swing, I wasn't paying attention (or listening to my dad) and got to close... I was bleeding ALOT because I'm on blood thinners. With my mom and dad's help I got to a nearby hospital and got a plastic surgeon to do some stiches and I got antibiotics... they didn't have time to numb my mouth for the stiches, so I felt all the pain... I was NOT HAPPY!

Here are the people I "Tag":

-Cain's Mommy at Clinkscale's Family Blogspot
-Sydnie's Mommy, Sundie at Sydnie's Sweet Heart
-Trista's Mommy, Amanda at Trista Faith Blogspot
-Casey's Mommy, Gina at Family Talk


**Update on Me**

I've been doing well, getting over a small cold. The past week and a half I had been studying like crazy and doing finals. Monday at 2pm it was all over and I was SO relieved! I've been trying to relax for the past couple of days, but with Christmas two days away I've still been busy... such is life. I have to do some more shopping today with money I don't have, but the small gifts I give to me family are special either way. I feel behind in so many things like this blog, spending time with my bf, bills, etc. Luckly, I have almost a month break before next semester to get some things done and also relax. I can't believe the year is almost over, where did time go? This year has been a busy and crazy one for me... having a serious boyfriend, family, my 1st ER visit in a long time, my dad losing his job, me having to pay for me own health insurance for the 1st time, hard semesters in college, etc. BUT I've had a very blessed year to and for that I'm grateful! =D
That's about all I've got right now.
I hope you ALL have a VERY MERRY AND BLESSED CHRISTMAS!!! I know I will!!

Sending LOTS of **Heart Hugs** and LOVE!!! Keeping LOTS of kiddos/adults in my prayers especially Logan and Derrick!!

With LOTS of Hope, Love, and Faith,



***CHD Awareness Montage #3***

-If you'd like you or you CHDer in my Montage please send: pictures (hospital and happy), name, CHD, date of birth, when diagnosised, and angel date if passed to my e-mail:
Sweeetie 2516 (at) Aol (dot) com OR lceleskey 87 (at) gmail (dot) com

Thank You!!! =D

Friday, December 18, 2009

CHD Montage!

I'm going to do a 3rd CHD Awareness Montage... which I will start after finals which are REALLY stressing me out and wearing me down, I'm SO tired; they end on Monday for me though! Yay!

I've had CHDers on my mind SO much lately and just feel like I need to do another CHD Awareness Montage. I want to post it everywhere and show it to everyone, especially with CHD Awareness Week coming up in Febuary!

So, if you'd like your CHDer or you to be in it please send me: pictures (hospital and out of the hospital are good), name, CHD, birth date, when they/you were diagnosised, and angel date if they have passed into the gates of heaven. You can e-mail me at: Swe eet ie2516 AT A ol dot Com or lcele skey 87 AT g mail dot Com (just delete the spaces... had to write them this way so I don't get robot spam). If you already been in one of my CHD Montages and want me to you those pictures, let me know! Thank You SO Much!

I SO DESPREATLEY want to spread CHD Awareness! Praying and thinking of SO Many!

Prayer for the rest of my finals and my HUGE paper due on Monday would be appreciated!

Thanks! =D I'll update soon!

With LOTS of Hope, Love, and Faith,


P.S.: Check out this article... an adult CHD Survivor is going to run a marthon and raise money for the Children's Heart Foundtion while spreading CHD Awareness! Way to go Nels!
http://www.heraldtribune.com/article/20091218/ARTICLE/912181029/2055/NEWS?Title=Heart-defect-survivor-is-set-to-run-and-to-inspire-others-along-the-way

Monday, December 7, 2009

Today is 1 Year for Me and Christopher!!

**First off, my mom had minor surgery this morning and all went well. "Thank You" for the prayers! =D**

I can’t believe it has already been one year since my amazing boyfriend, Chris, and I have started dating! I love him SO much! He is not my first boyfriend, but he is my first love and I pray he is my last! He is such a huge support to me and is always there for me. He is understanding; he tries so hard to understand my health issues and how to deal with them. He is sweet, kind, and caring. He has a wonderful smile! He is very smart; he will be graduating college next December with a double degree in Computer and Electrical Engineering. He knows how to make me smile and we both enjoy the simple things in life. He has introduced me to new things like his love for video games and believe it or not I like playing most of them… his love for Michigan Football, not so much! Christopher is just an overall great guy and I’ve never been happier! I thank God everyday for bringing us together. God knew I needed him and he needed me. =D

So, how did we meet? Well, for over 2yrs. before we met my dad was dating his Aunt (they are still dating). My dad knew who Chris was, I did not, I had never even heard of him. Every family event that I went to at my dad's girlfriend’s house he wasn’t there and every family event I didn’t go to he went (too funny, I guess we weren’t suppose to meet till a certain time). Last Thanksgiving, I got a phone call from my dad saying “Happy Thanksgiving” … my dad had been upset with me the week before because my math grade was bad… so my dad tells me he found someone to help me with my math and then he handed the phone to Chris. We talked and that was it, Chris later friended me on facebook and wrote me a message. From there is there we started dating and on Dec. 7th, 10 days after the phone call he asked me if I wanted to be his girlfriend. Awww! ♥

Though today we are in school all day, we will be going out to dinner! It has been an amazing whirlwind of a year with my wonderfully amazing boyfriend… who will be 25 next month (Shhh… I didn’t tell you that)! I pray we have many, many more years together!

I Love You Christopher! ♥



With LOTS of Hope, Love, and Faith,

Thursday, December 3, 2009

Been Busy! Quick Update!

Well, there is only two and half more weeks left in my college semester, then I get a much needed three week break from school. I've been busy, busy, busy! Thanksgiving was wonderful! I got to see my niece, Lily, for the first time since her birth in early October! She is getting so big already! I'll have to post pictures when I get them uploaded... I'm so behind on uploading pictures, I'll have to do a post on pictures during break.

I've been doing well (like I said, busy! lol), I'm staying healthy... haven't been sick yet this winter (holding my breathe lol). I've been having alot of anxiety lately (along with stress);I was diagnosised with anxiety disorder about two years ago... which wasn't surprising to me as I've always been a worry wart plus 85% of CHDer will experience/have depression and/or an anxiety disorder in their lifetime... sadly, that statistic is not surprising to me. Anyways, it is not easy to control the anxiety as sometimes you don't have control over the feelings! It can be really fusterating for me and I don't like the feelings. I can usually control it and most of the time I'm fine, but then out of know where it sneaks up on me... I've had a few times where the anxiety was so bad it turned into a panic attack (haven't had one in months though), which are not fun. So, I've been dealing with lots of unknown and known anxiety lately. I'm doing ok today though.

I continue to thank God for the positives in my life and to help guide me through the negatives. My amazing boyfriend, Chris, and I's 1st Anniversary of dating is on Monday! I can't believe how fast, yet slow, the year went. I will post a small update all about my boyfriend soon! ♥

Before closing, I would like to ask for a few prayers:

1) My mom is having minor surgery on Monday morning. That is all I'd like to say about it right now. She is nervous and so am I. Please, pray everything turns out ok and God gives her strength at this time. She has wonderful support from her finance so she should be just fine.


2.) CHD kiddo, Logan, is a precious little guy whose parents got some not so good news at his cardiology appointment a day or two ago. He may be facing a third open heart surgery soon than later. Please, pray for Logan and his family (Hang in there Stef!). You can offer support at there blog: http://www.whenlifehandsyouabrokenheart.blogspot.com/


3.) CHD kiddo, Derrick, another precious little guy is facing a second open heart surgery soon. Please, pray for Derrick and his family. They can use support as well: http://www.carolinacarters.blogspot.com/

THANK YOU!!!

That's all I've got right now... if you haven't and you have time please check out my recent post How Congenital Heart Defects is My Life. It will be featured on Steve's, an adult Tricuspid Atresia Survivor, blog carnival about Surgeries on Dec. 13.
Also, I have a firstgiving site to try and raise money to a wonderful nonprofit Organization called
Hypoplastic Right Hearts so they are able to fund there Hearts United 2 Conference in Texas in Sprin/Summer next year... I would love to go and reaching my goal would help: http://www.firstgiving.com/laurenceleskey also a 20yr. old named Jessi with Tricuspid Atresia has never met anyone with her CHD (or CHD in general) and really wants to go too. She also has a firstgiving site: http://www.firstgiving.com/jessicagoffard. Please, check out the sites, but you ARE NOT OBLIATED to give money!!! I'm just sharing information with all of you! Please, don't feel like you have to give something, I KNOW how bad the ecomony is right now! Thank You!!! =D

Sending you ALL LOTS of WARM **Heart Hugs** and prayers. As always, "Thank You" for all the wonderful support! I'm ending the post with a recent picture of my niece, Liliana, courtesy of my future sister-in-law Ashley (love the pictures she takes of my niece!).

Isn't my niece, Lily, just adorable? =D

With LOTS of Hope, Love, and Faith,

Thursday, November 26, 2009

Happy Thanksgiving!!!

Just letting everyone know that I'm doing well! Today I'll be spending time with my family and my boyfriend's family!! I'm SO VERY Thankful for my loving family, close friends, my CHD community, and of course my amazing boyfriend! I'm also SO Thankful for my health!! I'm VERY Blessed!! Sending LOTS of Thanksgiving wishes and **Heart Hugs** to ALL of you today!!

So... Have a Happy and Blessed Thanksgiving Everyone!!! =D

Photobucket


With LOTS of Hope, Love, and Faith,

Tuesday, November 24, 2009

Congenital Heart Disease is My Life...

CHD is my life; it is all I’ve ever known. I was born into this; I didn’t have a choice or say in the matter. I had to fight many times to live: from 11 weeks old in serve heart failure and dying, to a 50/50 chance for my Fontan when I was a little over 2yrs. old, but I survived; I’m here. Without those life saving surgeries, procedures, medications, machines, doctors, and family I wouldn’t be here today. There is a life after surgery when you have a serve Congenital Heart Defect, but the memories and the trails of day to day trying to go on like nothing has happened is not something you can do. Yes, I’m ever so thankful for the surgeries I’ve had that have given me a chance at life, but I continue to struggle with my CHD and will the rest of my life…

From the time I wake up in the morning till the time I go to bed I have little reminders that I have a CHD, 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.

When I wake, as I get dressed I always see those scars on my chest, I always glance at them. During breakfast I take medication that helps my heart continue to be strong. While walking I sometimes have to stop, I get out of breathe, it hits me again. When I get stressed, I get muscle spasms around my heart (was dignosised with these last year), again it reminds me. At 7 O’clock on the dot every day my cell phone alarm goes off, time for my most important heart med, my beta-blocker. Before bed, I automatically take two baby aspirin with a snack. When I change into PJ’s, those scars make another appearance. As I lay in bed my chest can hurt, my heart is adjusting; it’s beating slowly. I pray, I close my eyes, I never forget. My heart reminds me every day of my life, it affects my life, and it will always be a part of my life.

This CHD has lead to my anxiety disorder, has helped in my stubbornness, has helped me be blunt about things, has given me nightmares, has given me a hidden anger, and has helped me in my very emotional personality. All these negatives of me have been affected by my CHD and are now forever part of my life, BUT…

Though my CHD is a big part of my life and it affects every part of it in some way, I try not to let it define me or hold me back from achieving my dreams. This CHD, though has affected me in negative ways throughout my life, it has also affected me in many positive ways too.

My CHD has taught me to be more understanding of people around me. It has taught me to not take life for granted and to love the people you care about with all your heart. It has taught me that family and close friends are the most important things in life. It has taught me to enjoy the simple things in life and to enjoy the small positives of everyday. It brought me together with so many wonderful and amazing people. It has given me a motivation to help others and to always have faith. Lastly, my CHD has affected my personality in the best way possible as it has helped shape my loving, caring, kind, sweet, inspirational, brave, and strong character.

Just because you have a chronic illness doesn’t mean you can’t live, laugh, love, have fun, and make memories…

My CHD will never go away, but I will take what I can from it and keep living my life to the fullest… I LOVE my life and I consider my mended heart a gift!!!


With LOTS of Hope, Love, and Faith,

Saturday, November 21, 2009

My CHD Journey

I was born August 1987, a supposedly 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 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 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 demanded a local hospital to admit me (back then my parents were on health insurance that you needed a request for admittance for tests by the primary doctor). 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.

Me, a few days Post Emergency Heart Catherization

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 Iwould have between 3-6
months of age!


One of the smiles they would get out of me while 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 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.

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 did not 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!

Me, about a week Post Pulmonary Artery Banding

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. My dad tells me my crib has a bubble thingy over it to help me breathe and for breathing treatments
(I don’t know the proper name for it). 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 Palliation. 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% 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 came out 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 did not 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.

Me, about 2 weeks Post Fontan

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?


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 theater 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 go 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 was very grateful my parents never let me give up on things and gave me a pretty “normal” childhood. I’m thankful for that!

At age 14 I was diagnosed with yet another medical issue, scoliosis or Spina Bifida Scoliosis meaning I was born with a mild form of Spina Bifida (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 whatwas 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 Supera Ventricular 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 breath, 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 havingissues with weird heart beats and some minor heart rate issues, I wore a 30 day heart monitor in Sept. 2011 and we are going from there… but I'm still doing well and living life.

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 amazing parents who have done SO much for me over the years to bring me to this point in my life, the fought so hard to get me here healthy and happy. For that I will always be internally grateful to my parents, I love them SO VERY much!! I also have a wonderful family including two grandparents, two brothers, and a niece who I love dearly!! I also have an amazingly husband, named Christopher, whom I love so much!! I have big plans for my future and though I have a tendency to think negatively, I’ve been trying my hardest to think more positively!

In December of 2011 I graduated college with a Bachelor’s degree in Psychology!! I’m SO proud of myself!! I finished college just a day after getting married to my loving, amazing, and supportive fiancĂ©, Christopher. We had just a small courthouse wedding with no rings as we were tight on money, but it is the marriage and love that is important. We celebrated our one month wedding anniversary January, 21, 2012! We are so much in love. Chris is my best friend and the most supportive person ever. Chris accepts me for who I am and not my heart condition, he is always by my side through anything. I’m very lucky and grateful to have him!! At the end of December 2011 after graduating college and getting married, we moved from Michigan to California (cross country in the US) for a job that Chris got. We are finally settled in and doing well.

I plan on becoming a Child Life Specialist one day. In my spare time I hang out with my husband, I love to write, play video games (usually with Chris), watch movies, be with family, and help out in the CHD Community. I hope to have kid(s) one day. I also hope to one day write and publish my own book. Until then 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!!

A semi-recent picture of me with my loving and supportive husband, Christopher
(this was taken 11 days before our marriage)


20th Fontanniversary!!!

Today, 20 years ago…

My parents handed me over to the doctors for my second and riskiest open heart surgery, the Fontan Procedure. It had only been a month before during a heart catherization 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 that was only about 10yrs old, still a fairly new operation. 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. A 50/50 chance is what the doctors bluntly told my parents, but my parents hung onto to positive 50%.


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My parents had a lot of faith in the doctors and God that I would come out ok. God had his plans, he wanted me to live. I’m happy to say that I was one of the fastest Fontan recoveries the hospital had seen back in the 80s, only one month in the hospital. It's an even faster recovery today; technology is awesome. As far as complications that I had from this surgery, other than me pulling out a chest tube (then them having to put it back in while my parents held me down as they didn’t have a enough nurses around at the time) and me being on a special diet, I didn't have any. Thanks to the founders of the Fontan Procedure, the doctors, my parents, and God I’m here today. The Fontan Procedure continues to save the lives of SO many CHDers… I’m also internally grateful for Mr. Fontan and his collegues for working hard to develop such a life saving surgery.


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I do have two small stories that my parents shared with me about my time at the hospital recovering from my Fontan:

My dad tells me that a week or two after surgery I had to start walking again to get the blood flowing and prevent blood clots. My mom didn’t want to do it as she couldn’t stand me in pain. My dad took the job. A nurse along with my dad would take me into the hallway and give me a walker. Then, my dad would hold my blanket in front of me. My dad would tell me to come get it and I would cry and take a few steps. Every time I’d get close to my blanket, my dad would pull it back. My dad said it was heartbreaking to see me so unhappy and in pain, but it had to be done. He knew for my own good and health I had to walk again.

My mom tells me about how I was put on a medium chain triglyceride diet. It was hard as I loved cookies and it was not allowed on that diet. Well, one day while my mom was sitting next to my hospital bed, I keep asking for a cookie. My mom’s heart broke. That night when she went home to be with my older brother and my dad stayed the night with me in the hospital my mom was determined to make me cookies. She bought medium-chain triglyceride oil and found a recipe. The cookies came out hard as a rock and tasted nasty.. So, she put a whole bottle of cinnamon in the mix the next time around. They were better, but still hard as a rock. My mom got the idea to wet a paper towel and wrap it around the cookie and heat it in the microwave. This made the cookie soft for a few minutes. When she got back to the hospital to see me, she heated one up and gave it to me. I took one bite then held it and smiled. My mom said I never took another bite, but held that cookie for dear life. She says the smile on my face was priceless and was worth every minute of trying to make me those cookies.

I was discharged from the hospital four days before Christmas in 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?


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My older Brother and Me on Dec. 25th, 1989... just 4 days from coming home from the hospital


Today I have been thankful and also thinking of the ones who never made it and those still fighting. They remind me of why I have to spread CHD awareness. They remind me to ALWAYS have Hope~Love~Faith!!! So… Here I am, 20yrs later and ever so happy to be here. I'm very blessed in so many ways. I have two amazing parents who have done SO SO much for me over the years to bring me to this point in my life, the fought so hard to get me here healthy and happy. For that I will always be internally grateful to my parents, I love them so VERY much!!! (You can see pics of me with my amazing parents on my left side bar).

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Me with my very loving and amazing boyfriend, Chris


“Thank You” ALL so VERY much for ALL the wonderful messages, e-mails, and much heard prayers!!! You guys really are amazing and are like my second family!!!
I continue to pray for SO many!!! Sending LOTS of WARM **Heart Hugs** to ALL of you!!!
May God Bless, Guide, and Comfort you on your journey!!!

With LOTS of Hope, Love, and Faith,

Thursday, November 19, 2009

The HeartFelt Blogger Award!!!

This morning while reading an update on one of my favorite Heart Mom's Blog, I found that she nominated me for the HeartFelt Blogger Award. Stefenie at When Life Hands You a Broken Heart... Create Hope gave me this wonderful award. Thank You SO much Stef, it really means a lot to me! I wish I could award this right back to you because your posts touch my heart!

The Heartfelt Blogger Award is awarded to the blogs that make us feel all comfy or warm inside when we read them.

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Here are the rules for this award...

1) Display the award logo
2) Nominate up to 9 blogs that make you feel comfy or warm inside
3) Link to your Nominees and leave a comment on their blog telling them about the award.
4) Link to the person whom you received the award

Those who make me feel comfy and warm inside, in no particular order are (Oh how I wish I could Nominate everyone, there are SO many blogs that make me all warm and fuzzy!):

1.) Michelle because I love reading about her Five Little Blessings especially her CHD warrior, Zachary, who is adorable.

2.) Amanda because I love reading about little Janelle, CHD warrior, who is very spunky. Amanda is also very sweet and I love talking with her.

3.) Baby Hope's Mom as she shares her precious daughter's difficult journey with HLHS which started just two months ago at her birth.

4.) Jessica as her posts are beautifully written full of emotion as she shares her new journey of living life without her fourth child, Ethin, an adorable HLHS warrior who earned his angel wings this summer.

5.) Mary as she is a heart mom to cutie Drew, who has started up a Michigan chapter of "It's My Heart" to raise CHD Awareness.

6.) Katie who shares all her families adventures including Heart Warrior daughter, Maddie, who is one spunky and cute little thing.

7.) Dawn as I enjoy reading all about her adorable CHD Warrior, Natalie, as well as all the funnies of her kids.


Oh how I wish I could choose all of the pages I read, but these are the ones that were sticking out in my mind right now. I feel bad that I could only pick so many. Please know I enjoy ALL the blogs I read! There are SO many inspirational stories and EVERY CHDer that I've read about has touched my heart FOREVER!

"Thank You" ALL SO MUCH for the WONDERFUL comments on my last post, it meant ALOT to me! =D

Sending everyone LOTS of WARM **Heart Hugs**!!
May God Comfort, Bless, and Guide you on your journey!!

Now, off to work on a BIG paper and study for a BioPsych test... fun stuff!!

With LOTS of Hope, Love, and Faith,

Tuesday, November 17, 2009

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.

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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!
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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.

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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.

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Cuddling with mommy!

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

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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!!

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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,

Saturday, November 14, 2009

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:

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

Tuesday, November 10, 2009

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,

Monday, November 2, 2009

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,

Tuesday, October 20, 2009

Answers to your Questions Part 1

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: lceleskey87@gmail.com and I will answer them in a future post! =D

Also, before I forget... A HUGE "Thank You" for ALL the Congratualations on my new niece and kind words!!! It meant alot to me and made me smile!!! =D

OK, here are some of those Questions and Answers:

Q: What was the one thing that bothered you the most as a child growing up with a CHD?

A: The thing that bothered me the most was the fact that it was hard to keep up with other kids my age in gym class, on the playground, or just playing in general. Kids would always ask why I had to stop so much or sit out and friends asked the same, I would try my best to explain with the little knowledge I had about my heart condition at the time, but they usually didn’t understand. They would look at me different afterwards and sometimes didn’t want to play with me anymore and that was hard, but it taught me so much about other people and who my true friends are.

Q: Do you remember anything from the surgeries when you were younger?

A: I have one memory from my second open heart surgery when I was a little over two years old. I was sitting in a big red chair and had tube coming out of me. I was crying and asking for my daddy to pick me up, but he couldn’t because the doctors had to replace a tube. I remember the pain I was in, I remember not understanding what was happening only that I wanted to be held. Not the best memory, but I know it happened as I told my parents and they couldn’t believe I remembered. I have no other memories of any other heart surgeries or procedures. I do remember everything about my second eye muscle surgery I had when I was 8 and the one I had last year.

Q: What is different about the Fontan I got compared to the Fontan they do now?

A: I had what is called the Fontan Pilliation which was the originally designed Fontan procedure by Francis Fontan and his partner to fix patients with Tricuspid Atresia. Over the years the Fontan Piliation was modified for all one ventricle fixes. What they did simply was us everything that I had and make it work. I had three chambers intact so they used them. My one right chamber doesn’t do much, but it works to some extent. I only have one working ventricle though, so I’m considered a half a heart. The modern version of the Fontan bypasses the whole right side or left depending on the condition and makes the remaining side do all the work. From my understanding by doing this they reduce leakage from the side that didn't develop all the way, reduces the chances of blood clots as well (not sure how) , and reduces chances of high blood pressure.

Q: Do you plan/know if it is possible to have children?/What have the doctors told you about having children?

A: I do plan on having kids one day. How I will have them is still up in the air. I have always wanted to adopt and gestational surrogacy doesn’t sound like a bad idea either, though both are expensive. My cardiologist has told me that if I stay in the good health I’m in now then I shouldn’t have any problems having a child. I would be high risk, I’d need a c-section, medication would be adjusted, I would be monitored around the clock, and something unexpected could always happen just like anyone else. When I feel like I’m ready for a child, my cardiologist said to go to an adult congenital cardiologist with my spouse (when I have one) and talk it over before I get pregnant. If my boyfriend and I get married then we will talk about what we want to do. Though, in the back of my mind and in my heart I would LOVE to have my own child, but I’m not for sure if I want to go through with it. I have plenty of time to think about it though!


Part 2 Coming SOON! =D

I continue to pray for so many, special prayers for CHDers to stay healthy!! Sending warm **Heart Hugs** to ALL!!


With LOTS of Hope, Love, and Faith,