Shannon and Derrick

Shannon and I worked together for several years before she got married and started teaching. We didn't see each other for a while but then I found out she was pregnant and that at her 20 week ultrasound they found out that Derrick had a CHD. I contacted her and we talk all the time now, since we have started Hope for BRAVEHearts (I will get to that in another post!).

Derrick is the cutest little thing and is 1 year and 2 days younger than Lorelei. He is so full of life and has had several procedures and 2 open heart surgeries and will have a third this spring.

This is D when he was a baby and his lips are green because I gave him a green sucker. :o) To read more about D, click here.

Mandy and Evie

I met Mandy when she came into my workplace and I found out that her daughter, Evie, had a CHD. We exchanged blog sites and it started from there! Our daughters have become friends and we miss them terribly. They have moved to Thailand and are doing God's work over there.

Mandy has not only become my friend but also like my sister. We can share what our children have been through and she has taught me a lot about my faith! I am so glad that He placed her in my path!

These two truly are our miracles! Princess Evie and Princess Lorelei!

To read Evie's story, click here.

Rebecca and Annabelle

We met Rebecca a few days after Lorelei's first surgery at MUSC. Annabelle passed the month before from HLHS, a CHD. Rebecca started making Annabelle Baskets for the babies in the PCICU in memory of Annabelle.

Lorelei was the first recipient of an Annabelle Basket. It was super cute. There was a blanket, cute socks, a rattle and of course, a hairbow! Rebecca is an amazing woman and I am glad to call her a friend. Thank you for all you have done!

Please read Annabelle's story here.
If you would like to know how to help with Annabelle Baskets, click here.

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!