Happy 7th Birthday Caiteyn!

How is it possible that my first born is 7 years old today?!? I guess what they say is true, time flies when you're having fun! I couldn't imagine my life without you Caiteyn, you have brought so much joy and purpose to my life that I wouldn't be the person I am today if it weren't for you. I enjoy every minute that we have together and I am proud to be your Mom...I love you Baby Girl!

HAPPY BIRTHDAY CAITEYN!!!

Gabriella

During spring break, the girls and I had the opportunity to meet Kristi and her daughter Gabriella. We were first 'introduced' to each other through Andrea, Owen's mom. Andrea had asked if I knew of Gabriella and when I said no, she explained that she was waiting for a heart transplant and was being treated at Loma Linda. I immediately made contact with Kristi and found out they had a clinic visit coming up and they were planning on staying in Southern California for just over a week because the jet that would be flying them out (they are from the Phoneix area) if they 'got the call' was undergoing maintenance. Kristi is a DIE HARD Disney fan and explained that they would be spending a couple of days at Disneyland...what better place to meet each other?!? We hit it off right away and the girls fell in love with Gabriella and Kristi.

Gabriella and Caiteyn under Cruella's spell.

Standing in line for Toy Story.

Gabriella, Caiteyn and Carlie waiting for the Electrical Parade to start.

Fast forward to April when Kristi and Gabriella had to travel back out to California for another clinic visit. They were lucky enough to be able to fly out this time and after Gabriella's check-up had a few hours to kill. I invited her over to our house to hang out for a bit which allowed Kristi and myself to do some catching up. We ended up going to dinner before their flight left and were having such a good time, that they almost missed their plane.

A few weeks ago, Kristi got 'the call' which turned out to be a false alarm. On Monday, May 17, she got another call and this time it was for real! I immediately sent her a text and explained to her that I would be at the hospital within a few hours. I was lucky enough to see and spend some time with Gabriella as they waited for the donor heart to make it back to the hospital. Gabriella, as well as Kristi and her husband, were so strong. Watching them say goodbye to their little girl before she left for surgery made my heart ache, it brought back so many memories.

Gabriella did great during surgery and 48 hours post-transplant, she is no longer intubated, is not requiring oxygen, has had her foley and arterial line removed, and is walking the halls...she is a strong little girl and I am so glad that she and her sweet family are a part of our lives!

Happy 4th Birthday Carlie Girl!

It's hard to believe that FOUR years ago today, we welcomed Carlie into our lives and hearts forever! She has brought our family so much joy and we are forever grateful that we were chosen to be her parents; she has taught us so much about life! Through her, we have had the opportunity to meet someone wonderful people who have changed our lives forever!

A collage of Carlie's past year...

From Collages

HAPPY BIRTHDAY CARLIE GIRL!

Mommy, Daddy and Sissy are very proud of you and love you so much!

LLUCH Gala Pictures

The Loma Linda Children's Hospital Gala went well and was a nice night helping out our hospital that has helped us in so many ways. I guess I didn't realize just how big the event was, there was about 1,000 people there! They held both a silent auction and a live auction and raised about $675,000! I couldn't believe the generosity of the people who were there, it was amazing and inspiring!

My camera wasn't working properly so I didn't get the amount of pictures I had planned on, but my friends took some and passed them on to me...

Dr. Bailey and our family

Myself, Carlie and our good friend Robin (who adopted a sweet little girl with Shone's Complex)

Four Heart Families

Honoring Dr. Bailey and to his left, Teresa Beauclair, Baby Fae's mother. She gave heart families like us a gift when she sacrificed the life of her daughter for the future.

LLUCH Gala

Every year, Loma Linda University Children's Hospital holds a black-tie optional gala to help raise money for the hospital. The theme this year is Got Heart!, to celebrate the 25th anniversary of the first pediatric heart transplant. As I have mentioned before, Dr. Bailey is Carlie's cardiothoracic surgeon and he was the first doctor to try, and later be successful, a pediatric heart transplant. So while the event will be raising money for the hospital, it will also honor Dr. Bailey and his accomplishments.

This past summer Carlie was invited to be part of a photo shoot that would be used for the gala. During the shoot, Carlie was being very uncooperative and I thought that the photographer would be lucky to get one good picture of her...imagine my surprise when I received this in the mail...
...not only did they get (and I really do think the only GOOD picture of her that day) a picture, but Carlie became the 'face' of the event and we couldn't be more honored to be part of such an important event.

Around November, we started receiving phone calls and emails from family and friends telling us that they had seen the picture of Carlie in the paper or in our local magazine but the biggest surprise was when I got a phone call from another heart mom asking me if she had just seen Carlie on a billboard (it was one of those digital billboards and she was driving so she wasn't completely sure if it was her or not), I told her that I had no idea. I sent my in-laws out to investigate because it was close to their home (about 30 miles from ours) and they emailed me this... ...I couldn't believe it! And then about a month and a half ago, another heart mom sent me this...

...which is a billboard very close to the hospital. Who knew that the ONE picture that the photographer got would show up all around town?! WE ARE SO HONORED TO HAVE OUR SURVIVOR BE PART OF SUCH AN IMPORTANT EVENT!

As much as we would love to be part of the event, it wasn't looking like we would be able to afford to go ($200 per person wasn't in our budget) when one of our favorite nurses was able to get a whole table donated to heart families! We are so excited to be able to spend the evening raising money for the hospital as well as honoring such an important man in our lives, Dr. Bailey.

Pictures from the event will be coming soon!

1st Dance Competition

This past weekend was the girls' first dance competition experience. Since the beginning of the season, this is what Caiteyn has been working so hard for. Originally the whole dance team thing was just something that Caiteyn was going to be doing, but about four months in, the director came to me (and another parent of a 'little' sister) asking if Carlie could be included in the production piece. Our production includes all of the different teams (jazz, tap, hip-hop, gymnastics) and has been choreographed to the music from Seussical the Musical. Each team represents a different character from Dr. Seuss' books; The Cat in the Hat, The Grinch, Green Eggs and Ham, Whos (which is what Caiteyn's team is) and Thing 1 and Thing 2...can you guess which character Carlie is? Thing 2! Seeing bits and pieces of the dance for the past 7 months, I was excited to see it...and they did great, taking home the highest award.

Thing 1 and Thing 2 waiting to go on stage.

Green eggs and ham.

Whoville

About a month after I agreed to allow Carlie to be part of the production piece, the director came to me (and the Thing 1's mom) asking if she could choreograph a competition piece for the "little sisters" to compete in the under 4 category. This was a tougher decision to make because first of all, Carlie would be on stage without her sister, not to mention I wasn't sure if she was ready for this type of "look at me" attention. It would also require a bigger financial and time commitment...after talking it over with Mike, Carlie and the other mom, we decided to go ahead with the dance. During the first practice, the 'big' sisters went in to learn the dance as well so that they could help their little sisters practice it at home and after about 10 minutes, the director came out and said that she wanted the 'big' sisters to be part of the dance as well; I thought it was a great idea, I didn't have to worry about Carlie being afraid on stage without her sister. On the day of the competition as they were ready to go on stage, I was very nervous for Carlie. She has been going through a separation thing lately and I was afraid she would either not walk out on stage or see everyone in the audience and run off stage...I'm happy to say that Carlie did GREAT! She was smiling, having a lot of fun and she didn't forget any of the steps. I had this knot in my stomach and my eyes were filled with tears because I was so PROUD of her! Caiteyn did an awesome job as well (this was not her first time on stage, being on stage is the whole reason she wanted to be on the dance team!) and looked like a pro up there!

Caiteyn's team dance was the cutest! When we found out which song they would be dancing to, "Proud Mary" by Tina Turner, we couldn't wait to see what their costumes would look like. With the costumes came a wig, and let me just say, when the girls walked onto stage, the audience LOVED IT!

Both girls did great and we can't wait for the next competition!

Did you ever wonder how mothers of disabled children were chosen?

After Carlie was born, someone shared this beautiful poem with me (which makes me cry every time I read it) and it has become one of my favorite poems and so I would like to share it with all of the Heart Moms, as well as any mother who has a child with a disability...enjoy.


Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the Earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia."
"This one gets twins. The Patron saint will be Matthew."
"This one gets a son. The Patron saint…give her Gerard. He is used to profanity"

Finally He passes a name to an angel and smiles, "Give her a disabled child." The angel is curious, "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today; she has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time, she will be present at a miracle and will know it! I will permit her to see clearly the things I see...ignorance, cruelty, and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" Asks the angel, his pen poised in mid air.

God smiles, "A mirror will suffice."

CHD Awareness Week

Today marks the first day of Congenital Heart Defect Awareness Week (February 7-14) and in honor of this week, Carlie and the many children who are living with or have lost their life to a CHD, I would like to share some information with you and ask that you share it with others around you.

*CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Down Syndrome).

*1 in 10 of those born with a CHD will have a fatal defect.

*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

*The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.

*There are approximately 35 know Congenital Heart Defects.

*Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.

*There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.

*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.

*Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.

*Only about 30% of the children who need a heart transplant receive one in time.

*About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.

Two years post-Fontan...

...and life is SWEET!

Happy 2nd 'Fontan'niversary Carlie...you are a MIRACLE!

I 'Heart' Heart Families!

I LOVE living in Southern California! Many people choose this area as a vacation spot which allows me the perfect opportunity to meet other heart families. Last year I was able to meet the Allred Family when they decided to take a Disneyland trip. I enjoyed spending time with them and the girls had so much fun with their 'Seattle friends' as well. We had great time getting to know each other and sharing our experiences.

Maddie and Carlie, January 2009

Just before Christmas, I received an email saying that they would be visiting the area again, I was so thrilled! So last week, the girls and I drove down to Oceanside to hang out with the Allred Family again! Being around their family feels so natural, like I have known them for years. Katie and I were able to talk about things so easily and again, the girls had so much fun with their friends; I told Katie that I could get use to them visiting once a year! Thank you so much Allred Family for allowing us to spend time with you...you are so kind and I hope to see you again very soon!

Maddie and Carlie, January 2010 (Maddie wasn't very interested in having her picture taken)

A few days later, we drove out to Disneyland to hang out with the Ridgway Family. We have met them a handful of times during their previous Disneyland visits and this time they had their new addition with them, sweet Kanyon. The girls always enjoy seeing their Arizona friends especially since their girls and Caiteyn and Carlie are so close in age. Our visit was a short one, but just as fun!

Caiteyn, Emerson, Ainsley and their friend Tucker waiting in line for Toy Story.