A Small Update... 2yr Anny... Happy Holidays, Merry Christmas!!

Hello Everyone!

I know it's been awhile. It seems like I get so busy with school and other things that I forget to update my carepage and my blog. I'm sorry about that, I'm going to try to be better at it. I took two online classes this semester since I'm temporarily living in California and my college (and family) is in Michigan. I finished both classes this week! I'm so happy to finally be in Holiday break! :D

Health wise, I've been doing pretty good. I've been having trouble sleeping lately, but that can happen for me from time to time. I need to get on a schedule, get a small exercise schedule, and stop worrying so much (but it's hard to not worry about everything especially with being away from family).

On November 28, one of the oldest Tricuspid Atresia survivors, Steve Catoe (his blog was called "The Adventures of a Funky Heart"), passed away. It was a shock to me. He was 44 and I had "known" him for over a year via the internet. He was a nice guy who not only gave so much Hope to so many, but also gave so much information about CHDs (Congenital Heart Defects) on his blog. Steve also knew how to LIVE to the fullest despite limitations! He taught CHD parents to let you kids LIVE and that No one is promised tomorrow especially us CHDers. I know Steve never had the Fontan (an open heat surgery for Single Ventricles) and had health issues for awhile, but considering when he was born and how bad the CHD technology/care was it is a Miracle in itself he made it to 44. Steve is one of my heroes and his legacy will live on! I hope I'm doing as much for CHD parents, CHD warriors, and CHD Awareness as he did. Rest in Peace Steve and take care of all those CHD Angels as well as keep cheering on those of us still fighting! SO Remember to LIVE, let your CHD LIVE to the fullest they can! Make Memories and just LIVE! Because in the end that is all that really matters no matter how long ones time on earth is.

On a more BRIGHTER Note:

December 7... "A day that will live in Infamy" Was Chris (my amazing boyfriend) and I's 2 year Anniversary of being together!

Chris left a beautiful card for me to read when I woke up! And then he came home from work a bit early and took me out to dinner at Outback Steakhouse; so sweet! It was a nice and quiet night together. I love him so much!

Here is a picture of Chris and I:

Christmas is coming up next week!!!! I can't believe it!!! It will be our first Christmas away from family! I think it's harder for me. Not only is my family struggling back home, but I'm so far away from them. It will be sad not to be with them on Christmas, but I will call them and think about them. We love each other and that's all that matters. Chris and I will have a quiet Christmas with just us. No tree or decorations (no money for it plus we are moving back to Michigan come May, so there is only so much we can bring back) and NO SNOW! The no snow part will be SO weird! I know in Michigan they already got a lot of snow and very cold weather. I don't miss the cold weather or snow haha, but it will be different that's for sure. It's been raining a lot over here in Northern Cali, but hey I'll take it! :P Some that Chris workers with invited us over for Christmas dinner since we will be without family, so that was really sweet. I'll be making a dozen easy bake cookies (they are the break and bake Toll House cookies haha) to bring over to the persons house; I like to keep it easy. This Christmas I will be missing my family (I've been missing them for awhile as it's been over 7months without them), but they will be with me in spirit. I'm not expecting or needing anything for Christmas, just want spend time with Chris and enjoy a nice day with some good food with my family in my heart. Come May I'm going to be SO excited to see family! But in June I have a few doctors appointments including TWO cardiology appointments, but I will face that when it comes.

I'm hoping to do some more updates and blogs after the Holidays. Till then I hope you all have a Wonderful and Merry Christmas and/or very Happy Holidays!! Be Safe!!

Praying all my CHD Community especially those who will be spending the Holidays/Christmas at the hospital or without a loved one and/or CHDer.

"Hope"! Happy Holidays!

With Lots of Hope, Love, and Faith,

♥

A little bit from me…. A 21st Fontan Anniversary… Words of wisdom from My Mom

Small update on me: I’m doing well! Got my flu shot a few weeks. Haven’t been sick yet, fingers crossed. Online classes are going ok; one class going well and the other not so well (she is a bad teacher it seems… should not be teaching online). Thanksgiving is coming up and will be the first one away from family, just Chris (my boyfriend) and I. We decided on getting Boston Market and just relaxing… and of course calling family to say “Happy Thanksgiving”. We are both doing well and just living! So Happy “Early (of late for Candians)” Thanksgving everyone!! I am definetly grateful and thankful for many things, the most important: My life, I’m still here and living. Today is an “Early” Thanksgiving for me…

…Today it has been 21 years since my Fontan (2^nd open heart)…

Today, 21 years ago…

My parents handed me over to the doctors for my second and riskiest open heart surgery, the Fontan Procedure, I had the Modified Fontan (they don’t this one anymore, there are many different types/revisions). 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, but especially and more so ME. The Fontan was a surgery that was only about 10 years 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%.

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, I had a few: I had drainage issues, needed to be on a special diet, had a rest tube reinserted after it had been pulled (my parents had to help hold me down as there weren’t enough people at the moment), and one Heart rate scare. 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 colleagues for working hard to develop such a life saving surgery.

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?

My older brother, Ryan, and I on Christmas Day, 1989... 4 days after 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!!! Here I am, 21years 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).

I’ve never celebrated my Fontan-anniversary, as my parents never brought it up. My parents never dwelled on my CHD, they never brought me up to dwell on it either. My parents did not want my CHD to define me or be something talked about all the time, thus we never celebrated as my parents were grateful and thankful EVERYDAY to have me. My childhood despite doctors, tests, hospitals, etc. my parents gave me the most “normal” childhood, I was happy; I’m SO thankful for them for that. They taught me independence and they always focused on what I could do and not what I couldn't. I knew about my special heart, but my parents told me everyone has problems or things they need to face in their life, mine was my special heart. That God didn’t make a mistake; he knew I could handle it. I owe it my parents, the doctors, God, and everyone else that played a big part in saving my life to LIVE! That I do… LIVE! I will continue to LIVE! I’m just celebrating a little bit today, but for the most part it’s just another day as just like my parents did… EVERYDAY of my life I’m Thankful! BUT my parents will NEVER forget that day, they remember it like yesterday & though I have only one memory I too will NEVER forget the day... this day 21 years ago that I was given the best chance at life! I must say a BIG thank you to the two surgeons who saved my life, but never got to meet since: Dr. Arciniegas & Dr. Hakimi!!

**Here are some words of wisdom from my mom, please know this is just my mom’s feelings and opinions:

**Suzanne (my mom)**: "As Lauren's mom I can say that I never had forum boards, facebook, help groups, friends who have CHD kids, nor was my family educated with the knowledge I had being in the medical field. Parents please don't take this the wrong way, but, sometimes these forum boards can make things worse for you emotionally. I've raised Lauren with the knowledge of her heart condition on a 'need to know' basis at the appropriate age. I've taught her to listen to what her body is telling her always. I do not know what it feels like to have a CHD, therefore I rely on her to tell me. I NEVER dwell on her heart condition, I know the risks involved and I know what I have control of and what I don't. Yes I worried about every procedure.....I taught myself to think of HOW I'm going to handle the outcome of a procedure in terms of: questions to be asked, who I was going to believe lol, pros and cons of the procedure itself, making sure Lauren's brother was taken care of....it was basically a business.....my own personal business that I ran. No one was allowed to touch her unless I read the chart and spoke to the professional at hand. Only the IV team was to poke her, and I requested they send someone who could do it the 1st time. I watched over her like a hawk! And yes I have gotten people either fired or taken off her case because of neglect. It's my job to CONTROL ONLY WHAT I CAN......the rest is in God's hands. let's not forget that as these children grow stronger....your goal is to let them go and grow....give them the knowledge to be independent....I know that's hard, but it has to be done. Don't think for one minute Lauren being in CA doesn't bother me...it does, but I gave her the skills and knowledge she needed to grow as a person.....and now, had to let her grow emotional, mentally, without me at her beckon call sort a speak. She has always been a home-body, but I knew she needed to spread her wings.....I miss her everyday....but I'm so proud and happy that she is breathing independence.”

Thanks Mom for sharing! Love you and miss you! (below a picture of my mom and I the day I left for California)

I miss and love my family and I can’t wait to see them in the beginning of May 2011!

Praying and thinking of SO many!! Thanks for all your love, support, and kindness!! It truly means a lot to me!!

With LOTS of Hope, Love, and Faith,

♥

It's Been a Long Time!!!

Hello Everyone!

I know it’s been a long time since I did an update on me. I apologize for that, things have been busy, crazy, or I just didn’t know what to say. I don’t know where to start!

I guess I start off by saying a HUGE “Thank You” for ALL the sweet and kind birthday comments I received! They all made me smile! Thank You, it means a lot! I had a wonderful, quiet birthday even though I was so far from family for the first birthday ever. I received phone calls from them, which helped a lot. I spent most of the day just relaxing and when my boyfriend, Chris, came home he took me out to dinner at a restaurant of my choice (I choose Outback Steak House… YUM!). Chris had left me a surprise before he went to work as when I got up hours later there was a birthday gift from him on the kitchen table, awww. He is the sweetest, most loving boyfriend to me, I love him SO much! I received so much love and kindness from not only my family and boyfriend for my birthday, but from so many other people like you all! Thank you from the bottom of my heart for making my birthday so special!

I’m going to rewind a bit before my birthday as I forgot to tell all of you that Chris took me to San Francisco about 2wks before my birthday. We both had never been there, but it was only a 2hr drive from house temporary home in CA. It was a very nice day, perfect weather and we has a very nice time. Lots of walking was done and I slept like a rock that night haha. It was very crowded and though we don’t exactly like big tourist cities we did have a good time and some fun especially just spending the whole day together without any distractions. Below are a few pictures that I snapped that day.


Awww, aren't we cute? hehe


I thought this bread was cute!


The Golden Gate Bridge! So big and pretty!

Now, I can update on what is going on in my life right now as I feel all caught up. As of Sept 8th I started my college semester. I need to finish up my Psychology degree at the University of Michigan-Dearborn as I’m senior standing, so since I’m over here in California for a year I had no choice but to take online classes. I’m taking two this semester: Intro into Literature and a Sociology class called The Family. Things are going well so far, it’s harder than going into a class I think because everything is totally up to you. In the beginning it was so frustrating because our internet was not working right at all. It would go in and out or go really slow or go out period for hours at the time. We called many times, but they said there is a problem with the connection in our area and they are working on fixing it. Luckily, for weeks now the internet has been working great! Hopefully it stays that way! Fingers crossed!

I’d like to ask for prayers for my family. My mom and dad (they have been divorced for years) are struggling so bad financially. Things the past week have been looking up for them a little bit. I wish I could help them, but I have to help myself with my struggles first. I’ve been under lots of anxiety and stress over everything my family and I are dealing with. I started have weird rhythms, but I called the cardiologist and I’m fine, it’s just anxiety and stress. I just need to calm down a bit… they have gone away for almost 2wks now!

I also learned that I need to get a whooping cough/Tetanus booster shot as California as an outbreak of Whooping Cough. I’ve never had it before, but I haven’t had the booster, so I need to find a place that will give me one even though I’m not a CA resident and no health insurance here. Wish me luck! I DID get my flu shot this past weekend, so that made me feel better. It didn’t give me a fever this time! Yay!

This weekend will be busy as two of my boyfriend’s friends are flying in to California and we are going to Anahiem, CA for Blizzcon (a video game convention). I get to see downtown Disney, but NOT Disneyland as they paid to go to the convention. I should still have a good time. I’m excited about getting out of the house and doing some fun things. I will try to update on how everything went when I get back.

Oh, before I forget:

My little brother, Aaron turn 12 October 11th and my niece turned 1 October 14th! I so wish I could have been there, but they know I love and miss them SO much!


My Little Brother, Aaron, and I over the years! :D


My adorable niece, Liliana, now a year old! :D

October is also the month I was diagnosised with my CHDs 23yrs ago! I was about 8-9wks old and in severe heart failure and almost died. I don’t like to dwell on the time I was diagnosised, but I will never forget it, well my parents really as I don't remember any of it. You can read my CHD Journey by going up at the top of the page under my header and click on the Tab that says "My CHD Journey".


Baby Me at about 8-9wks old a few days after my Emergency Heart Catherization to save my life.

Ok, that’s about it for now. Please keep all CHDers in your thoughts and prayers… I know of so many struggling right now and we have lost so many. My heart aches for all of them! They all touch my mended heart and I think about so many often!

Despite all of the Heartache in the CHD community lately, I just keep LIVING! Not that it doesn’t hurt as my mended heart aches for them so much along with their families (I've cried for them too), but as a CHDer myself I can’t dwell on my own morality. The CHDers, big and small, who have passed are Heroes and we owe it to them to LIVE! So, LIVE, keep fighting and keep spreading awareness. The CHD angels lives will never be forgotten and we will continue to fight! CHD Angels give me strength to keep going and keep fighting! The doctors, surgeons, parents, and everyone else saved us to LIVE no matter how long that may be. If you dwell it will eat you up! Maybe (not for sure) that’s why my parents never was interested in being a part of the CHD community when I was growing up, not that they wouldn’t have loved to talk to others, but dwelling on the heartache and all the bad might affect the Living part. I go by this: no one knows when they are going to go or how, CHDers like me or other children and adults with illnesses are at a higher risk, but we still don’t know what will happen. So cherish every day, make memories, love one another, enjoy life the best you can in any situation, and LIVE to the fullest that you can!

Love and hugs to all!

With LOTS of Hope, Love, and Faith,
♥

Today I'm 23!!!

Today I’m 23. Another year, Another milestone, Another miracle as I’m ALIVE!


This year has been one with many changes that have put me to the test. The biggest is leaving my family behind and moving across the country with my boyfriend, Chris. Chris got a one year internship at Intel in Northern California and I’m super proud of him, but him getting the job gave me one big decision. It was hard, but my heart is with my boyfriend and so is my future. I know my parents didn’t want me to go especially because of my heart, but you have to take chances and adventures in life whether or not you have a heart defect. I’m so proud of myself and of my parents for letting go over the past couple of years as I'm sure it’s been hard giving me the responsibility of my health and my life. I think with everything that has gone on this past year it just flew by! I miss my family since moving. I’m so use to a big birthday bash every year since my very 1st birthday whether I wanted a big bash or not. The past like 8yrs I haven't wanted a big bash, just to be surrounded my my loving family. My parents have always celebrated my birthday as another big milestone, another year of beating odds. I now celebrate that too, I just don't need the party. Though I won’t have my family here with me this year, I know my birthday is still very special and is yet another milestone and celebration of my life for beating more odds. I will receive phone calls from family and my parents will speak their heart about how happy they are to see me another year older like they always do. I will most likely tear up, but though far away a celebration of my life will still be thrown.


I don’t feel another year older or wiser, but I have learned a lot. I always seem to be learning, that’s a part of life. I’ve been so proud of myself the past couple of years. There are so many things I’ve overcome or accepted. When I was 16 I learned more about my heart defect, how serious it is and my unknown future. It was hard and with learning that came coping and a few minor health issues along with family and money issues. I have accepted a few years ago that my heart defect will be the thing that will most likely kill me one day that I will always have challenges, but in the end my heart will win. In all of that I have decided that I will LIVE to the fullest, throw away statistics, and take chances (not the bad ones like doing drugs). I continue to cope with fear and challenges, but most of the time I feel “normal”. For everyday I wake up I feel grateful for the new day and every night I go to bed feeling so blessed for the day I got to be apart of. I have come along way in my short 23 years of life and have beat many odds. From being the very sick 11week old that they gave a slim chance of living to the small child they thought would never reach adulthood, here I am at 23. There is not one day that goes by that I’m not grateful and blessed for everything I’ve been given. I’m SO VERY grateful to my parents whom I love SO VERY much and had such a HUGE part in getting me where I am today. I’m also SO VERY grateful and owe my life to the doctors and nurses that saved my life. I’m so grateful to have an amazing family which includes two brothers, a niece, two grandparents, and very much missed grandparents and great-grandparents in heaven. I’m also grateful to have one amazing and loving boyfriend who does a great job at taking care of me. Lastly, I’m grateful to my faith in God as he has given my strength to help cope with everything and helped in my positive attitude.


I plan on living to 80, I like to aim high. I don’t know what my future holds, but I know more procedures, pokes, prods, surgery, and pain will be part of it, BUT I also know happiness, love, kindness, great times, wonderful people, family, and new exciting adventures will be a BIG part of it too. I’m ready for whatever else life has to throw at me. Today though, I will take the day to remember birthdays past and to look forward to birthdays to come as well as enjoy the moment, the precious thing called life!


I’d like to say a HUGE HUGE “Thank You” to YOU my AMAZING CHD Community, the community I call me second family! Thank you for the ongoing support you give me, the love, the much heard prayers, and the kindness. Thank You to those who have sent me cards, birthday comments, birthday wishes, birthday prayers, and birthday gifts as well as a BIG Thank You to ALL of the kind birthday wishes & birthday comments I will receive today; ALL of which means SO SO VERY much too! My heart has been touched in words I can’t describe. I have NEVER asked for anything, all I ever wanted was to support, pray, spread Hope, and spread Awareness, but what I got in return is something that I will be eternally grateful for. So “Thank You” all of you amazing, inspirational, kind, and sweet CHD parents, Adult CHDers, CHD kids/babies, CHD grandparents, CHD Angel Parents, & the sweet CHD Angels. Let’s keep supporting, fighting, learning, praying, and inspiring!


I have a dream to impact the world in some small way, but I think my dream has already has come true. My next dream is to cure CHDs… Who is with me??


Today I’m 23, tomorrow is a new day and the adventure of another year awaits me.

Me on my 1st Birthday in August of 1988

Me on the Eve of my 23rd Birthday, August 2010

Praying and thinking of SO many!
Sending LOTS of **Heart Hugs** to ALL!


With LOTS of Hope, Love, and Faith,
♥