Lorelei's Heart Story

Lorelei was born on April 18, 2008 via c-section. All was fine until her pediatrician heard a murmur and called for and ECHO. They found that she had a hole in her heart (VSD) and her aortic arch was "interrupted". Sunday night she was flown to MUSC and we met up with her Monday afternoon in PCICU.  She was so tiny and was not able to eat due to some wires and tubes in her belly button. Thursday morning she had her first surgery to repair the hole in her heart and fix her interrupted aortic arch.
She came home 2 weeks later after us having to learn how to feed her (she threw up A LOT). She was a fun baby that never slept and had reflux. When she was 17 months old, she had to have a second surgery to fix some aortic stenosis that was happening because of some tissue that was growing under her aortic valve. She recovered quickly, she had her surgery on a Monday and was home that Friday. She still didn't sleep and really had fun.
She is still growing and is almost as tall as I am. (I am not really that tall, 4'11"). Now at almost 5 years old, I relive this story like it is yesterday. She will have to have a third surgery, which is a repeat of her second surgery. It will be within the next 2 years. Lorelei will be starting kindergarten in the fall and is able to live like any other kid. Here are some pics that document her life.

Family and Friends

What does family mean to you? To me, of course, it's my husband, daughter, parents, sisters, brother in laws, nieces, nephews, grandma, aunts, uncles and cousins BUT it also means my FRIENDS!

I am having a homesick moment I guess, because I truly miss my NY friends. They have been there through thick and thin and I love them for it! I wouldn't have gotten through Lorelei's first surgery without their support and love. (They know who they are!)

Through Lorelei and her CHD, I have also met some WONDERFUL Heart Moms! It's so nice to know that there is someone you can talk to about all of your concerns, and moments you hoped would come but weren't sure they would. I think since February is Heart Month, I might introduce you to some Heart Moms that I consider family and I will update more!

Tomorrow is Go Red day so, please wear red to support CHD Awareness and for Lorelei! I have already painted my nails and I will be wearing red to support Lo!

I will leave you with these lyrics that I think of when I say Lorelei is a SURVIVOR!

Destiny's Child: Survivor
 
I'm a survivor (What?)
I'm not gon give up (What?)
I'm not gon stop (What?)
I'm gon work harder (What?)
I'm a survivor (What?)
I'm gonna make it (What?)
I will survive (What?)
Keep on survivin' (What?)
 

I know, I know...It's been a while!

I am writing this afternoon from my couch where I have been for 4 and 1/2 weeks! I had foot surgery on Dec. 27 and it's going well but I sure can't wait to have this pin out of my toe.

Plenty of things have gone on since the last time I posted! We went to Disney with Make A Wish and of course, the holidays. Since I'm home, I will try to start updating because Lorelei is so CRAZY and I also told my friend Mandy that I would update for her. Here are some pics of crazy girl...

September....

This is absolute, favorite time of the year! When September 1st rolls around I get a little giddy because I know that first my anniversary is coming, 8 years, but then comes pumpkins and leaves and holidays!

I love pumpkin ANYTHING and will be starting baking VERY soon.

 I need to start thinking about Halloween costumes and what to do for Lorelei's class. Anyone have any good ideas? I love to make things so I think I will try to make something "crafty" for them.

Then comes Thanksgiving and cooking and baking for that. I love when we all get together at my mom's and just give thanks for what we have.

I have already started Christmas shopping. I know, I know it's really early BUT we don't use credit cards and I have a budget. Now I just need to think about what kind of Christmas cookies I will make.

But for now, I will start small and make some pumpkin somethings and get out my crockpot in hopes to use it for some yummy comfort food!

Easton Friedel

This is John's cousin's little boy who was born Thursday, August 23, 2012. The doctors and nurses immediately knew something was wrong with Easton because he was born with a little amount of skin on his arms, hands, legs and feet. He was transferred to another hospital and diagnosed with Epidermolysis Bullosa, a rare skin disease. Any kind of rubbing, friction, scratch can cause the skin to blister. There is risk for infection and most children diagnosed with the more severe forms have a life expectancy of 12 months. So here is what I plan to do.....

I am a Thirty One consultant and I have set up a Party on my website www.mythirtyone.com/77596 through 9/10/12 (So that you can also shop from our NEW FALL catalog) and my total commission will be donated to Jared and Danielle. Just go to the website, click on Place An Order, then click on Shop Now on For Easton Friedel, then SHOP!

Thanks so much in advance!

The Little Questions

This weekend, we declared a FAMILY WEEKEND! Neither John or I had to work and Lorelei was showing some signs that we just needed to hang out and be a family this weekend. It was great! Saturday we went to the Farmer's Market and went to the playground. While at the Farmer's Market, one of the girls who was cashing us out asked about Lorelei's scar peeking out from her shirt. (See Pic) Then it happened again today. We were swimming at a friend's house and her kids asked Lorelei about her scar. They asked her why she had scratches on her chest. (They know that Lorelei has had heart surgery but it has taken them 4 years to notice that scar.) It's those little notices that make me realize that my kid has a broken heart and sometimes it's the little questions that slap you back into reality. We will be seeing Dr. Shuler in 2 weeks and I am getting a bit nervous, but these little weekends where we just hang out as a family with no commitments are helpful!

I'm late, I know, but......

HAPPY 4TH BIRTHDAY LORELEI!!!!!!!!! Lorelei had a fun week for her birthday. She had a party at daycare with a cookie cake and some crafts. Then John's parents came and Hope for BraveHEARTS had our 3rd Annual Golf Tournament but more on that later. We then had a party for her at my Mom's house and we had a Barbie cake. Then my Dad came and on her birthday we took her to Frankie's Fun Park. We rode go carts, played mini golf and played tons of games. Grampa Don won her TONS of tickets, which Lorelei was really psyched about! I will leave you with some pics of her party.