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.

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

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

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

My parents waited for what seemed like forever in the children's hospital waiting room! Finally, my cardiologt, the one I STILL have to this day, came in and told them in the calmest voice ever (as my parents put it) that I was stablized, but very ill! That I have a CHD called Tricuspid Atresia and would require an emergency heart catherization to save my life once he got my parents consent. He talked with them, he was kind, sweet, and caring. He answered questions and supported them... my cardiologist is amazing! The next day I had a heart catherzation to rip a hole in my heart because the one every child is born with had closed like it should, but that was the thing that was keeping me alive! I was put on a few medications and a special formula which consisted of concentrated Isomil with polycose added so I could gain weight as I needed to be at least ten pounds for my first open heart surgery which I would have between 3-6 months of age!
My dad feeding me.

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

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

If that wasn’t a big enough task to take care of me and make sure I ate and stayed healthy my parents had my older brother to look after who at the time was only 4 1/2years old and carried a lot of germs that could make me very sick. And of course Ryan adored me so it was hard to keep him away from me. I’m not sure how they got through it, it was hard, but they had family members that were willing to help as well. It wasn't easy for them, but they kept strong for me and held onto faith that I would be ok. My parents didn't want to accept that something might happen to me.

Cuddling with mommy!

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

Few days Post-PA Banding.

It was to help the blood flow in my heart and lungs until I was old enough to have the full Fontan. All went well during the surgery. Though it was successful in its purpose it didn’t make it any easier on my parents and family. As one of my grandpas have said to me about seeing my after surgery "It was a sight to see and very scary." Because I was so sick I had about a 20% chance of dying after this surgery. As my parents have told me, hearing any percentage that your child could die is not something you want to hear, but I beat the odds. My parents never lost hope! As for complications, I had one code blue called during my 10 day recovery because I pulled out my breathing tube, but after that all was well!

Soon after returning home I got dangeriously sick with RSV! I was taken to Children's Hospital and admitted. I spent about a month recovering from RSV on lots of medication! My dad tells me my crib has a bubble thingy over it to keep my air clean and for breathing treatments (I wish I remembered the proper name for it, but I forgot). After returning home from recovering everything went well and my parents as well as my older brother ajusted. Ryan LOVED playing with me! We began to be a normal family of four and my parents were felt more confident and comfortable in taking care of me. I had a few bumps in the road along with eye surgery at 18months, but I was HAPPY and I always seemed to SMILE!! The Fontan would be in the near future, but that post is for Saturday!!

My older brother, Ryan, and me.

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

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

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

With LOTS of Hope, Love, and Faith,


  1. Great blog. Thank you for sharing your story with us. I am so thankful you have beat the odds and are here to share your story and to raise CHD awareness. I know your parents are very proud!!

  2. Your parents must be so proud of you! Thank you for sharing your story, it is miraculous. I read, hear, and see so many miracles every single day and I am so grateful that you are another one. You have helped me and many other heart moms with the unknown and I thank you on behalf of myself and all heart moms.

  3. What an amazing story! Also a reminder that it's so important for parents to trust their instincts. Thanks for sharing!

  4. Thank you so much for sharing that story. It's amazing how stinkin' unaware really smart doctors were back then. Thankfully that is one part of your story that is very different from Casey's...we knew when I was 18 weeks pregnant that our baby had Tricuspid Atresia. Happy Heart Anniversary!

  5. Thanks for sharing your story, and a big "Way to go" for your mom and dad for trusting their instincts!!

    Happy Heart Anniversary!


  6. I read this last night but didn't have a chance to post a comment. I had tears in my eyes reading your story. I definitely connected with your mom through your words.

    Thank you again Lauren for sharing this with all of us. You have been on an amazing journey and you are an inspiration to us heart moms!

    Stef, Ryan, Wyatt and Logan

  7. Hey Lauren! I just wanted to let you know that I have a blog award for you on my blog.