On a side note - BMW Charity Pro-Am

Palmetto Hearts has been chosen as a charitable beneficiary for the 2009 BMW Charity Pro-Am (www.youcantmissit.com). This is a tremendous opportunity for us to raise money for our organization and to directly benefit our families. The money we raise will be used for the following:

• Fund our Family Voucher Program which will provide assistance with meals, travel, and hotel costs when a family in hospitalized for a CHD related surgery or procedure.
• Provide money for outings throughout the state such as the ones you’ve seen photos of on our website.
• Provide money to promote awareness for Congenital Heart Defects
• Help with printed material (brochures) and operating costs (website, telephone, etc)

We need your help! Information regarding tickets, volunteers, corporate packages, and player packages can be found on our website www.palmettohearts.org, along with a list of what Palmetto Hearts receives back from the sale, under the BMW Charity Pro-Am link on the home page. Celebrities like Kevin Costner, Cheech Marin, Joe Pesci, and Dennis Quaid have participated and are likely to show up again this year!

Please use this email and the attachment as a way to spread the word! It will take all of us working together to make this a success!

Thank you!

Heart hugs,

Sara

A little bit of everything

Getting back on track from Christmas vacation has been more of a feat than ever before. Just something about this Christmas and New Year, I wanted to get through it. I"m not saying I didn't enjoy it, just not as much as in years past. Last week getting in the routine of bedtime (which we basically let go) and getting up at 6:30 (UGH!) was rough on all of us. I believe we have gotten it all back together though!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Friday was the BMW Charity Pro-Am orientation. We got all of our information from them, then it was off to an Executive Board meeting for Palmetto Hearts. Saturday morning Kaeleigh and Avery had cheerleading and basketball, respectively. Saturday night has become our family movie night. We watched Space Chimps, it was pretty good. The kids enjoyed it for sure! Kaden doesn't have the attention span just yet for it. Sunday we headed over to Monkey Joe's to get together with some of our friends and other heart families, and to raise a little money for Palmetto Hearts. The kids wore themselves out sliding and jumping and running around! Tim and I were exhausted as well. Everyone slept well last night, except for me.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Kaden had his 6 month cardiologist check up this morning. I haven't slept well in a couple of nights. That's typical though. In the back of my mind, I still have the worry like I did when our heart journey with Kaden began. Kaden was wonderful at the PC (Pediatric Cardiologist) today. He allowed them to take his blood pressure, listen to his heart, and do a full echo. He laid still for around 30 minutes, and our tech was able to get pictures of everything they needed. Heart function is great, and the leakage around his aorta is down-graded from mild to minimal! However, the pulmonary stenosis (narrowing of the arteries that carry oxygenated blood to the lungs) is still at a point where he needs to have a more in depth study done. We are waiting on a call back from Nuclear Medicine (it sounds worse than it is) and we will take Kaden to be sedated and have a dye injected to "light up" his pulmonary arteries on a scan. This lung perfusion test will allow the doctor to see if there is there is blood flow distributed equally between his lungs. If there is any indication of a problem, we'll go back to see Dr. Malpass (his PC) and determine if any intervention is necessary. If so, we'll be headed back to Charleston for a heart cath and a balloon to be inserted to help with the blockage. As with everything, we know that God is in control. Kaden has FAR EXCEEDED any and all expectations from everyone involved with his medical care! We will continue to rely on God's blessing of health and healing for our little guy!

He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust." Psalm 91:1-2

Week 24(ish)

Busy with my family. That's my reasoning behind missing the past two weeks. Well, partly. I couldn't bear to ring in the New Year knowing that this was the year we were going to have a new baby. I went to bed at 11:45pm on December 31, 2008 just so I didn't have to cry in 2009. I'm moving, slowly but surely, back to "normal" life.

This Monday, Kaden will go for his 6 month heart check. I'm unable to sleep for nearly a week prior to these visits. The what-if's keep me from feeling at ease. But God always pulls through for me. I just visited my friend Rebecca's blog and am never amazed that God speaks to me through her. I am also walking by faith. Knowing my Father holds the keys to life and death and He has allowed me to experience both through my children. Kaeleigh, Avery, and Kaden's health makes losing the baby so much harder, but losing the baby makes their lives so much more precious. I know God will continue to sustain us on this journey with Kaden's heart, that He will provide for us.

Tomorrow I'm going to try to add a slide show to my blog, so stay tuned! Random pictures from the kids sports and other activites.

But just as he who called you is holy, so be holy in all you do; 16for it is written: "Be holy, because I am holy." 1 Peter 1:15-16

Week 22 - Christmas Eve

Kaeleigh and I went to Target today to grab some last minute items. I was looking through the racks of clearance and came across a maternity shirt. I looked at Kaeleigh and told her that I should be wearing those clothes right now, and she just hugged me and told me it was ok. The pain in my heart is still deep. Last night, Avery was sitting next to me at my desk and I was listening to the song in the link below and crying. He said "Why are you sad Mama?" I explained to him as best I could that I was just having a sad minute. He looked up at me and said, "Are you sad about the baby, 'cause sometimes I get sad about it too." Yes, it is sad today, but God continues to heal my broken heart and has given me such wonderful children to ease the pain. Their laughter is a blessed distraction from the cold world. I have already been given Christmas gifts, Tim, Kaeleigh, Avery, and Kaden, and the babies I can't hold now, I will hold them! God's promise!

Take a moment to listen to the song below (take from my friend Rebecca's blog) and allow it to speak to you and help you remember those that are celebrating in Heaven with our Savior....

Christmas in Heaven


“So they hurried off and found Mary and Joseph, and the baby, who was lying in the manger. When they had seen him, they spread the word concerning what had been told them about this child, and all who heard it were amazed at what the shepherds said to them. But Mary treasured up all these things and pondered them in her heart. The shepherds returned, glorifying and praising God for all the things they had heard and seen, which were just as they had been told.”- Luke 2:16-20

Week 21

I know, I know, I'm a day late! Truth is, I spent quite a few hours yesterday talking with a young mom who's unborn baby will be coming into the world and need heart surgery in just a few days. As I talked with her, I relived all I had been through with Kaden. I had the opportunity to talk with her about God, and how no matter what our circumstance, His plan is divine and He is in control. God has given me such an avenue to witness to families at such a vulnerable time in their lives. A chance to talk about His love for them, and that He cares, not only for their child's physical heart, but spiritual one as well. The look on the mother's face when I told her, "I wouldn't change that Kaden had heart surgery" said more than any words could. She was appalled that I would even suggest I was ok with it. But as I continued, I watched her face change and saw she understood, if it weren't for Kaden's surgery, SHE would be alone. God brought me to her nearly two years to the day after we found out about Kaden's heart. She understood, praise God. She could see how something so terrible could be made into something so amazing!

Our words aren't adequate enough to describe our loving, faithful, enduring Father. I cannot fathom a word great enough to encompass all He is to us, to me!! Praise you Father God, with uplifed hands and a renewed heart for the work you have given me!!! Thank you Father for allowing me to have Kaden, and showing me, beyond any doubt, You control the universe, and hold all things in Your hands! Glory, praise, and honor are Yours!

Praise be to the Lord, the God of Israel, because he has come and has redeemed his people. He has raised up a horn of salvation for us in the house of his servant David (as he said through his holy prophets of long ago) Luke 1:69

Twenty Weeks

This morning marks a date that should have been big for us. Today would have been the half-way mark of our pregnancy. We would have been having our ultrasound and her echo soon.

Yesterday I got to hold my friend's new baby. It was bitter sweet. I'm so excited for her, but my heart ached that I would never hold my precious little girl this side of heaven. I held back my tears as I looked at his face, touched his cheeks, held his hand, and did all the things I wanted for myself. As I handed him back to his mommy, my heart longed to be her, having the joy of that first bath, diaper, snuggle. All the things I won't have with Leilani.

For the last twenty weeks, I have longed for things that I cannot have. I have cried, yelled, been angry, and I have tried to give my aching to my Father. In my humanity, I am unable to bear this loss. I want the next twenty weeks to be different. So each week on Wednesday, as I remember my daughter and where I would be in my pregnancy with her, I want to post something positive about motherhood. Pray with me that God will allow me to use this blog to glorify Him, even in the pain.

The LORD your God will raise up for you a prophet like me from among your own brothers. You must listen to him. Deuteronomy 18:15

Fun Times

This is just a small sample of the daily fun we have with Kaden. I was actually posting last night's blog when Tim calls from the bathroom. Here's what I see:

That's my sweet baby, with the ONLY bottle of conditioner in the house. He has squirted it all over the bathroom floor. Not just that, but notice my makeup brushes at the bottom of the photo. He has used them as paint brushes. I thought no big deal, we'll clean it up and the floor smells nice now, then I look over at the toilet....

Excellent, now the toilet smells good too.

Thank you Lord, for our Kaden and his ever growing curiosity!

Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, "The LORD has done great things for them." Psalms 126:2