5 Years Ago................

I gave birth to a beautiful, perfect little girl. We were blessed to have a pediatrician who heard a murmur and gave it enough thought to call for an ECHO. 2 days later my precious, perfect little girl was flown to MUSC without her parents and we had no idea what was in store for us. On April 24, 2008 Lorelei had her first open heart surgery. It was a long journey with wonderful friends that were made and a wonderful hospital that took care of not only Lorelei but us too!

Lorelei 1 day old

Waiting for surgery

After surgery

Easter 2013 almost 5

We want to thank everyone that we have met throught this whole experience including, Palmetto Hearts and Rebecca Butcher (Annabelle Baskets). While we were at MUSC, Lorelei received the first Annabelle Basket. I also want to thank my partner in crime with Hope for BraveHEARTS, Shannon Carter, without you there would be no HBH! And, last but not least, Mandy and Evie. From a chance meeting at my workplace to becoming great friends, I am so glad that He put us in each others paths. Lorelei misses Evie and asks when we can go have tea!

I can't believe it has been 5 years but it still seems just like yesterday for me. I can't wait for another 50 with her!

Happy Heart Day Lorelei and in another few months, we will have another Heart Day Anniversary!

Habbada

One of my friends that I 've known for a long time has created a movement called Habbada. His motto is Live It. Love It. Share It. Habbada is all about being positive and creating unity to help others. I LOVE this! We all need to get away from negativity and come together and help our fellow man.

 Just in this past week, there has been a lot of heart break in my hometown. Friends are losing their parents, baby Easton is not doing well and another friend was in the hospital for kidney failure. I think everyone should adapt this policy and just try to do at least one positive thing a day.

If you want to check out Habbada go to www.habbada.com.

It's a great thing and I hope you will LIVE IT. LOVE IT. SHARE IT.

HABBADA!!!!!!!!
 

Other Heart Related Groups/Blogs

Along with Annabelle Baskets, we are members of Palmetto Hearts, a support group in SC for Heart Families.

There are also some Heart Moms that have blogs that I keep up with:
Mason
Logan
Zeb

Please read their stories and help raise awareness!

Hope for BRAVEHearts

After Lorelei was born, I felt I needed to do SOMETHING to raise awareness to CHD's. When Shannon had Derrick she also felt this way and we decided to start with making baskets for the kids at MUSC. The baskets were for all the kids whether they are in PCICU or 8D, the step down unit. We then decided that we would also raise money and give it to the MUSC Research Program.

We have a Pancake Breakfast every year as well as a Golf Tournament to raise this money. Hope for BRAVEHearts also makes blankets for the kids at Christmas and bring them down to them. We also partner with Texas Roadhouse and serve dinner to the families at the Ronald McDonald House in Charleston. That is one of my favorite things to do.

So far we have raised over $35,000 for the research program at MUSC and they are very supportive of us as well! 

BRAVEHeart Baskets include: a stuffed animal, a cup, socks, crayons and a variety of toys and games, books, and other small items. We can and will ship to other states other than SC.

Hope for BRAVEHearts is always looking for volunteers and suggestions so please let us know!

Check out our website: www.hopeforbravehearts.org

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!

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.

A little history

I know that I haven't been on here in a while and it's really because I don't know what to say. Lorelei has been doing great and we have been pretty busy. I have been rereading the blog a little and I have realized you know a lot about Lo but what do you know about us, her family?

John and I have been together FOR EVER! We dated in high school for 2 years and broke up for 6 and 1/2 years then got back together. We both went to several colleges, don't ask, long story. I wanted to be a psychologist, nope I graduated with a B.A. in Liberal Arts with a minor in Social Work. Guess what, I am a pharmacy technician! I love what I do and have met great people doing it. My husband is a Records Analyst after graduating with Criminal Justice and Political Science degrees. I guess some things don't work out the way you want them too.

We grew up in Central NY and have never been to NYC. Can you believe that?? I was a lake brat and lived in the lake all summer long. Boy do I miss those days! We grew up in a small town where everyone knew everyone BUT there was also a Maximum Security Prison smack dab in the middle of the town. We all felt safe even though it was right in town. We moved to SC because of the weather and jobs, well at least we thought there were jobs down here for us. It took us a little while to get established.

Well Lorelei and I are waiting for John, Papa and Grammy to get home from golfing and for my dad to arrive to visit for Lorelei's 4th birthday! Whoo Hoo!

CHD Awareness Week

February 7-14 every year is CHD Awareness Week!

This year Hope for BraveHEARTs is again having a Pancake Breakfast at Fatz Cafe in Irmo, SC. This Saturday February 11 join us from 7:30 to 10:30 to raise money for Congenital Heart Defect Research! Tickets are $7 and kids 4 and under eat free!

I know I've been M.I.A. for a while. My work schedule had gotten a little hectic and I decided that the free time I had would be spent with my family. Anyway, we had a fun few months with the holidays and all. Dec 27 we went for our 6 month appointment with Dr. S, Lorelei's cardiologist. He had sent all of her info down to MUSC surgeon to see when the next surgery would be. Well, we thought it would be this summer but he had other plans. Yes her subaortic stenosis is getting worse BUT her heart muscle is not thickening any so...the plan is to wait and see. I don't care for this plan but God has a plan for Lorelei and it will be done when it will be done. I just have to remember that. I am not a very good waiter...I have no patience. So we will go back to see Dr. S in June and see what happens then.

I continue my work with Hope for BraveHEARTS and spreading CHD Awareness. Next up after our Annual Pancake Breakfast is our Annual Golf Tournament. This will be Saturday April 14, 2012. Let me know if you would like to sponsor a hole, give a donation/prize, play or volunteer! I will get out more information about this soon!

I'm still here.......

I know that I have been MIA but I am a little busy and I will be back soon, I promise!

Hope for BraveHEARTS Holiday Project

On Saturday, October 1, 2011 we will be getting together to make blankets for the patients in PCICU and 8D at MUSC Children's Hospital. We will be meeting at Crooked Creek Park in Chapin at 2pm. Just bring (2) pieces of 1 to 1.5 yards of fleece and scissors and what you would like to drink. Hope for BraveHEARTS will be there with our Heart Warriors and snacks to boot! We are also bringing card making supplies so the kids or even yourself can make a card to put with your blanket.
This is NOT limited to Heart Families, we are inviting the entire community to come out and support HBH and the kids at MUSC!
Thanks for you support. Please let me know if anyone needs anymore information!

You can also email bravehearts@hopeforbravehearts.org to RSVP or if you have any questions!

Thirty One

I am now a Thirty-One Independent Consultant. I am so excited to be a part of such a great company! Please let me know if you need anything and visit my website at www.mythirtyone.com/77596. Thanks!

Lorelei's Heart Story

Lorelei was born via c-section in April 2008. I was having some blood pressure issues so we had to deliver her 2 weeks early. She was perfect. The next morning her cardiologist heard a murmur and said he would listen to her again and if it was still there he would call for an ECHO. I didn't think anything of it because I knew that a lot of babies were born with murmurs. Dr. B came in and heard the murmur again and called for an ECHO for the next morning (Mon). Well we were lucky, the ECHO technician was there that Sun afternoon and did the ECHO. Next thing we knew we got a call from Dr. B saying that there was something wrong with Lorelei's heart and a Pediatric Cardiologist was coming to explain everything to us.

Meanwhile, Lo was taken up to the NICU to get ready to be flown to MUSC in Charleston were she would have to have surgery. Dr. S came in to talk to us and told us Lorelei has an Interrupted Aortic Arch and a VSD. She would require surgery. That night, she was flown to MUSC and we had to make phone calls. I was still in the hospital because of my blood pressure issues so I was released the next day. That Monday we drove to Charleston (the LONGEST 2 hours of my life). She was in the PCICU and had all of these tubes and wires coming out of her. All I could do was cry!

Thursday she had her surgery. John and I both held her before she left and she did well through surgery. We were in PCICU for a few days then moved up to 7C where we had to learn how to feed her again and take care of her. We brought her home almost 2 weeks later. We learned how to deal with reflux and fussiness and to take care of her "zipper".

We went to Dr. S every 3 months for a check up and a little over a year after her first surgery, we learned that she required a second surgery for some sub-aortic stenosis issues. Some tissue had grown under her aortic valve and was increasing the pressures in her heart. When Lorelei was 17 months old Sept 2009, she had her second surgery. We went in on a Monday and gave her to the surgeons for a second time. One of the hardest things I had to do. She did awesome again and we were discharged from PCICU the Friday of that week, 5 days and she got to go home after heart surgery! She is my Rock Star!

We have been visiting her Pediatric Cardiologist every 6 months waiting to hear the "See you in 1 year" but instead we heard, she will have to have another surgery. My heart sank. She will be older and know what is going on! We go back in December, thankfully after Christmas, to find out when. All of her ECHO information has been sent to her surgeon at MUSC (who is the BEST) and he will decide whether it will be in the summer of 2012 or sometime later then that! Until then we will keep praying for her and our other heart friends!