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,

♥