Thursday, January 28, 2010

Answers to FAQ's From CHD Parents

PLEASE KNOW that these answers are based on my opinion and experience ONLY and YOUR child is different as EACH CASE IS DIFFERENT!!! Just take these answers as tips that may or may not work!!I'm NOT a doctor, a psychologist, or a professional of any kind!!

**Please, if you have any questions for me just leave me a message or e-mail me at: lceleskey 87(at) gmail (dot) com and I will answer them in a future post! =D**

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?

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.

Has God always played a large role in your life?

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.

Are your eye muscle disease/surgeries linked to CHD?

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.

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

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.

Have you always been thin or is that a family trait or do they think it has to do with your CHD?

Well, my mom is thin and my dad was a cross country runner. I have always been tiny/thin though. I have always had trouble gaining weight growing up as well as eating. It was hard to get me to eat or eat enough when I was small, but in the beginning of my teenage years I began eating like a normal person. I’ve always been a picky eater (still am, not as bad as I was little though). Even though I can eat a lot now and love to eat, I still hardly gain any weight. I have 2-3pounds water retention from one of my heart medications, but I still look thin… I’d look even thinner without the water retention. So, I think my CHD and my heart medications have a big part of me being thin. Actually, I heard once that most CHDers are tiny depending on their medication and what CHD they have.

What would you tell parents to do to help their child fit in or help them understand other children not accepting them being different?

Here are some things that MAY help:

-Keep reminding them that they are special, that people who become your friends and don’t care about you being different are your “true friends” (so to speak).

-On thing that I wish my teachers did when I was young was talk to the class about what I have and that just my heart is different… basically informing the students what they may see different about me, but it’s normal for me, not to be scared off by it, and that I have the same interests as the rest of the students. There was this one girl in my grade school that had something wrong and was in and out of school due to surgery. The teachers talked about her and what was up. They explained what she had, that she was born that way, ect. The kids accepted her a lot better afterwards… I just felt bitter lol. So, if you child is having trouble fitting in, make it a point to do something like this at their school, it could help.

-Another thing, getting them in an activity early as you can may help… whether in school or outside of school… just one (don’t want them to be too stressed). I was shy and had trouble fitting in at school, so at six years old my mom got me into acting classes and it helped. I was also into bowling and ended up playing it in high school as a sport. I never had a lot of friends, but my parents help teach me that the ones I do have are special and I don’t need to be popular to be happy.

Any advice that you can hand down to us heart moms on how to help our kids better understand their limitations as they get older?

You asked for it! Here are FOUR Awesome pieces of advice just for you! That MAY help!

-As your Heart kidds get older there will be some limitations (depending on their CHD) that they will forever have to live with, but only they know those limitations fully. My mom taught me how to listen to my body. I was taught that if I felt weird to TELL SOMEONE! I use this advice all the time! TALK to them! ASK them when they are young how they feel and to try to describe it, that way they will be better at it when they are older. Whatever limitations they have, that you know now, teach them now… in a fun way… and let them know they are special and it doesn’t matter what others think because those people who don’t run away after knowing your CHD are your true friends.

-Every Heart child will have some point in their lives where they ask about their CHD. Parents, BE HONEST, BE OPEN!! The BEST thing you can do it when they want to talk about their CHD, TALK!! If they don’t ever talk about it, then YOU TALK!! It is SO IMPORTANT that they KNOW how to be open about their CHD and learn how to cope in a OPEN way instead of shutting it out and hiding or acting like they are totally normal… if they did this they will have some serious problems if anything comes up when they are older with their heart, they will shut down and become more depressed.

-Each Heart child will probably have a point in their lives where they try to cope with their CHD, especially if they have a serious one. IF they have a breakdown, IT'S OK… LISTEN to them when it happens and tell them it’s normal. Always be OPEN with them and let them know you are always their to talk about it. IF they seem to still have distress, go get them outside support! It’s OK to do that! I did and it can help.

-Lastly, this doesn’t really have to do with limitations, but I wanted to get it out there. Try to treat your CHDer as normal as possible, let them try new things (things they are able to with their CHD, and let them go have fun, like a sleepover even though you may be scared, they need it and so do you!

***Thank You for ALL the prayers and messages of support!! They mean alot to me!! I've been SO busy that I haven't been able to spend alot of time on CHD stuff. Please know I'm thinking and praying for ALL of you!! Sending LOTS of *Heart Hugs*

With LOTS of Hope, Love, and Faith,

Thursday, January 21, 2010

Words From My Mom!!!

First, many of you may have seen these words on Carepage: SillyJilly07, but I wanted to post them myself to. Thank You Joy for sharing my Mom's words of wisdom and thank you to my Mom who always knows what to say when it comes to my CHD.

Words From My Mom:

For the CHDer's Mommies: You MUST NOT dwell on your childs condition......this will eat you up emotionally and physcially! Learning what COULD happen should only be used as learning tool......not to dwell only think POSITIVE thoughts, raise your child as normally as possible.....encourage them to try new things and above all, teach them to LISTEN to their bodies and communicate their difficulties in words........Stay Strong so that your children will too.
My Mom... Don't I look alot like her? (I think so)

Quick Update on Me:

I'm doing ok. I've had some anxiety issues lately, but I'm getting through them ok. College is keeping me crazy busy with 5 classes!... I'm stressed and tired. As for my blood results, they came back ok, I'm going to send them to my cardiologist to see if he is ok with them and I'll let you all know. No future appts. for my yet, but I'm trying to make a GI appt. and a Dentist appt. (yea haven't been to the dentist in 4yrs.... oh no). As for my CHD Awareness Montage, it will be posted in about a week or so. For those of you who sent pictures and info, THANK YOU!! There are still a few ppl I need to get an e-mail to about answering a questioning for my Montage for those who didn't answer it yet. Anyways, look for the Montage soon!

Thank You for ALL the much heard prayers and messages of support!!! As always they mean alot to me!! You guys are like a second family!! Thank You for following my journey!! I'm sorry I haven't been commenting lately, school and life have been busy, but please know I pray for ALL of you and think about you too!!

Thank you for ALL the prayers for the kiddos who had open heart surgery!! All 4 of them are doing well!! Two are now at home! =D

Until Next Time...

With LOTS of Hope, Love, and Faith,

P.S: For those who live in the Metro-Detroit Area in Michigan. I will be speaking at the "Its My Heart" support meeting at 7pm at the Royal Oak Senior Center on Jan. 25th!!!

Sunday, January 10, 2010

Sorta Quick Post and some Prayer Requests!!

Hello Everyone! Thought I’d give a quick posts on how I’m doing. I went to my OB/GYN appointment on Tuesday and that went well. They only had to poke me twice to get blood lol. I have small veins , always had and that is a bad thing if you have a Complex CHD and need to get poked to get blood, put in an IV, etc. Oh, well. Thank You all for the prayers and well wishes! I haven’t gotten the results from the blood tests, but I hope everything is fine. I should get the results in the mail soon, and then I need to fax them to my cardiologist to see if everything is ok. See, people with CHDs especially mine need to get their blood taken once a year to see if everything is good. I use to get my blood taken at Children’s Hospital or my Pediatrician, but I’m too old for both now so now I get it done at my OB/GYN or my Internal Medicine doctor. Anyways, I’m glad another yearly appointment is over with! Yay!

Tomorrow school my new school semester starts. I officially have one more year of college left before I get my Psychology degree with a minor in Sociology. I will graduate in Spring 2011! Wow! I can’t believe it! Time sure does fly! I’m going to try my best to enjoy my last year even though I’m not a huge fan of school lol. So, I’m sad my Hoilday break is ending because it hasn’t been that great with getting the stomach flu, but I did have some relaxing times. I will move on and hopefully this semester goes well!

***Exciting News!! I will be speaking at “It’s My Heart” Metro-Detroit Chapter Support Meeting at the Royal Oak Senior Center on Jan. 25th at 7pm. So anyone who reads my blog/carepage who live near Royal Oak, MI your welcome to come hear me speak as well as meet other CHD families! =D***

Lastly, I have some Kiddos that REALLY Need some Prayers this week!

~Miss Natalie (2 ½yrs. old), who has Tricuspid Atresia, will be having her Fontan surgery on Tuesday! Blog:

~Miss Jordan (3yrs. old), is also having open heart surgery on Tuesday! This will be her second.

~Little Man, Logan (3yrs. old), is having his third open heart surgery for a new conduit and repair a few other things. His surgery is on Thursday! CP: LoganBear OR

~Little Man, Derrick (8 ½ months old), will be having his second open heart surgery on Monday Jan. 18th! Blog:

Thank You ALL SO Much!!!

Thank You for ALL the wondeful comments, kind words, and prayers!! As Always the mean SO much to me!!! I'm sorry I don't get to anwer every comment, but please know they do mean ALOT to me!!! Sending you ALL LOTS of **Heart Hugs** and Prayers!!!

With LOTS of Hope, Love, and Faith,

P.S: Last Call for pictures and info for my 3rd CHD Awareness Montage! If you'd like to be part of it I'll need: Pictures (hospital and/or happy), Name, DOB, CHD, Angel date if passed, and the answer to this question: What sums up living with a CHD/having an angel with a CHD/having a child with a CHD?
My e-mails are: Sweeetie2516 (at) Aol (dot) com OR lceleskey87 (at) gmail (dot) com
I'd like the pics and info buy next Sunday! Thank You ALL SO VERY Much!!! =D

Monday, January 4, 2010

First Post of 2010!!!

Happy 2010!!! Ok, I'm a few days late. I hope you all had a Happy New Year and I'm sending Blessings out to ALL of you in this New Year!!! ♥

Thank you all for your well wishes for me and my boyfriend. We have both fully recovered from the stomach flu a few days ago. It was bad, but I'm SO happy it is OVER! =D Praying I stay healthy for awhile now.

The last few days my boyfriend and I have been spending alot of time relaxing. He has taken me out to dinner twice and took me out to brunch yesterday! He is SO sweet! I love him SO much!

Today, my boyfriend is in his Marine uniform for, hopefully, the last time as he is at Selfridge getting papers signed and dropping to the Inactive Ready Reserve(IRR) after serving 6 years in the Marines. He never got sent off to war, but he has served his country well. Now, he can still get called up to go off to war for the next two years if they really need him, but I hope they don't. He does have alot of respect for those over seas and hopes they all come back safe (so do I).

Tomorrow, I have my yearly OB/GYN women check-up and my yearly blood draw to make sure everything is ok. I hope the blood draw goes well, I hate them. Prayers and well wishes are wonderful. Thank You! =D Love you guys!

I also have to make a GI appointment still and have to make a phone call to my health insurance company... fun stuff... yea right. I've been trying to relax as much as possible on this semester break and though it started off bad, it has been getting alot better. The sad part is I go back to school next Monday... time goes by too fast! Ugh! Well, I will keep on enjoying the time I do have! =D

Well, that's about it right now. I have a few Prayer Requests:

Logan will be having his third open heart surgery soon!

Jordan will be having her second open heart surgery soon!

Derrick will be having his second open heart surgery soon!

That's about it right now, Thank You for all the messages of support and prayers! They mean alot to me! Sending out LOTS of **Heart Hugs** to all!!

Below are some pictures I wanted to share. Enjoy!

With LOTS of Hope, Love, and Faith,

P.S: If anyone still wants to be part of my 3rd CHD Awareness Montage I'll need: Pics (hospital and happy), CHD, name, DOB, angel date if passed, and the answer to this question: What sums up having a CHD/having a child with a CHD? My e-mail: Sweeetie2516 (at) Aol (dot) com OR lceleskey87 (at) gmail (dot) com Thank You!!! =D

This is my Cardiologist. He has known me since I came into the ER at

Children's when I was 11wks. old. He is awesome!

This is me during my stress test in Sept. 2009.

Two Pictures of my boyfriend and I before his Marine Corps

Ball on Nov. 7, 2009: Don't we look cute? =D