A Little Rhyme

This little Wallace is ten



This little Wallace is seven



This little Wallace is two



This little Wallace is in heaven



And this little Wallace is due, due, due on November Twenty-Second.

Two Years

Make an on-line slide show at www.OneTrueMedia.com

I cannot believe that this day two years ago our beautiful little boy came into this world. All the emotions wrapped up in that day still rise to the surface. The calls for Dr. Malpass, his pediatric cardiologist, the NICU team, the extra medical staff running around, it all seems to come alive again when I look at Kaden. I thought surely God would heal him without medical intervention and I would close my eyes with my hand on his tiny gray chest and open them believing that his stats would be normal and he would be completely healed. God didn't see fit to heal Kaden. He instead chose Dr. Bradley and the medical team at MUSC to be His instrument of healing. How I praise God today and everyday for the loving care we received and for the Hand of God being on our lives through the last two years.

Today, my sweet boy, we celebrate not only your birthday, but God's plan for your life. Through the sorrow and joy, the mountain tops and the valleys, may God walk with you, always holding you in the palm of His mighty hand. I love you, Kaden John, through you God has blessed my life.

“For the Son of Man came to seek and to save what was lost.”- Luke 19:10

Speaking at USC School of Medicine

I had the opportunity to speak on behalf of Palmetto Hearts and to raise some awareness for Congenital Heart Defects. The questions and answers session was amazing and I was astounded at the amount of respect and care these future medical professionals had for our cause. At one point, my emotions got the better of me and a few tears were shed. God knew I needed a reminder of the passion He put in my heart. I alone cannot take credit for what happened today and the way that things went. This is only possible through God, who has not only given me the heart (no pun intended), but those that work with me in each and every capacity of Palmetto Hearts. The email below is from the President of the group I spoke to. I'm sharing this with you, not lift myself up, but to let each of those involved with Palmetto Hearts that this is the way YOU are viewed, whether you have a board position or participate in forum discussions or take a family to God in prayer. Each of you make a difference everyday that you choose to be a part of serving our heart community. I am thankful for each and every one of you and none of this would be possible without you.

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I just wanted to thank you again for coming today. I have gotten AWESOME feedback from everyone who attended! You were great and I think everyone was really inspired. Thank you for what you do! It is so encouraging to know there are people like you out in the world who see how to make the world a better place and actually do it. Thanks again!

Maggie Gray

For Kaden

A heart that beats
Scars that won’t heal
And the amazing day
When time stood still

I held him all night
And kissed his sweet face
Knowing all the while
Only God knew his fate

I prayed and I cried
Father, take this from him
Heal his heart
Let no knife touch his skin

Let me open my eyes
And everything be right
Father please heal him
Please do it tonight

But the path had been chosen
And our Lord new best
This path we must travel
This would be our test

Somberly they came
And took him away
To fix his heart
And his life to save

I handed him over
Into hands unknow
Father, deliver him
I begged at His throne

Time stopped with his heart
Then began again
When we heard the news
We’re done, he’s on the mend

I look at his chest
The scars are still there
The battle of a lifetime
My little one fared.

Thank you Lord for our child
For each precious day
For the mended heart inside him
And the life that you saved

The Porta-Potty

I took the munchkins for soccer evaulations today. There were several stations set up for various skills. I took my friend's two girls, so there I was with five kids in tow. Not to shabby, I can handle it. Then I saw it, the one thing no mom wants to see with a bunch of kids..... a porta-potty. Oh, the dreaded, "we haven't developed our facilities yet, porta-potty." I shuddered.

We managed to make it all the way through the evaluations. Avery and Kaeleigh did great, and I'm excited to see them all suited up for games!! Avery has a natural talent for soccer and Kaeleigh is so athletic and will do amazing. Em and Cam did really well too, especially Cam. She's so stinking cute and was nervous, but pulled through and did her best!

We headed out to the car to get home and the word was heard..."pee." Kaeleigh heard it first and told me, then Kaden looked at me and said, "pee-pee." There I was, the woods or the porta-potty. I chose the latter. I guess in a moment of panic, all the nicely dressed moms, folks from the church, I was possed to not have my 2 year old use a tree. So Kaden on my hip and the others instructed to get in the car, and with a diaper bag hung around my neck, we half walked, half jogged to the evil beast. I won't go into detail about the various positions I had to hold him in so we wouldn't touch anything, but we managed. And now, I can proudly proclaim, "I have braved the evil of all evils with a heart child and we both made it out alive!"

Diapers be Gone!

This morning, Kaden took it upon himself to take off his diaper and begin using his potty chair. He's had a few accidents, but overall has done really well! It's a little bittersweet. I'm excited for him to reach this next milestone, but then I know he's further from being a "baby." This has been a pleasant surprise. I thought surely this one was gonna give me a run for my money while training!

So it's off with the diapers and on with the "big guy pants"!!

Rainy Days

I'm torn on loving a rainy day. On one hand it means I get to spend time with my family and on the other hand it means I'm stuck in the house with three rambuncious children! Enter the Wii...

What a fabulous purchase we've made, minus the competitive arguments between KK and Ave. All of us have been up off the couch playing tennis or bowling and interacting with each other. It's brought Tim and I together as well. We have bowling dates, at home!! Ok, I realize how sad that sounds even as I'm re-reading what I just wrote. But come on, we don't have sitters or family close by to watch the children so we rarely have time to reconnect with each other. We put the kids down and have a little time bustin' each other's chops while playing. It's been fantastic. If you can get one, I suggest you do!

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This past week has been tough. Kaden ended up being hospitalized with RSV. He was admitted Tuesday because he was dehydrated. It took four nurses 11 tries to get his IV going. It ended up in his big toe. His little veins were just too dry to get a line going. He's covered in bruises from all the tries. He was released Wednesday around lunch time and he's been much better since then. Tim and I are watching him for fever. Apparantly secondary pneumonia is very common after RSV, so we aren't in the clear on that yet. Still have another week of keeping him at home and things should get back to normal.

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I was not able to make it to my appointment on Wednesday with the doctor. I'm going to reschedule it for as soon as possible. I feel a sense of peace about it. I know God is going to provide in His timing.

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Kaden is going for a speech evaulation soon. He was supposed to go Wednesday but with the RSV, I'm not going to risk infecting other kids. I will post how that goes when we get there!

Opinions on Slavery

It's not at all what you think, I just have to share the conversation Avery and I had last night regarding the subject. Let me set the tone:

Our living room where earlier we had been working on his paragraph about which President he would like to be and why. He chose President Lincoln.

Me: Avery, hand me the remote, please.

Avery: Uhhhhhh, I don't want to.

Me: I didn't ask you if you wanted to, I just asked you to hand it to me. (mind you, I'm actually closer to the remote than he is)

Avery: I'm not your slave.

Me: No, Avery, you're not, but (voice rising) I said hand me the remote! Now hand it to me.

Avery: **pondering** I don't have to because Abraham Lincoln freed the slaves so that means I don't have to be yours.

Me: ...........


Need I say more?

Week 30

This week would have marked the "countdown." The final 10 weeks, the homestretch to welcome our little Leilani. I know she's playing with her brothers and sister in a place beyond dreams and that bring me great comfort!

I'm determined to do several things Here's my list: (By the way, I share this more to hold myself accountable to who else? ME!)

1. Make a list of concerns for my dr appointment on the 25th

2. Upload our family photos to Snapfish (currently working on)

3. Pray about some things going on with Palmetto Hearts.

4. Do my best to not eat boxes of Swiss cake rolls!!

Not anything super fantastic, just some stuff I gotta get done!

Some tears and a doctor visit

****Update**** The test was negative, so they drew some blood to check my hormone levels. The nurse is supposed to call me back as soon as they get the results. Of course, I already know what the results are, but perhaps it will get their attention and have my concerns addressed.




Well, more than just some. My heart is hurting so badly. I'm headed out to my OB/GYN to hopefully get some answers as to what is happening, why I have lost these precious babies. There are more than just two, there are five. Five little lives gone before they had a chance. Five little faces I'll never kiss, five little voices I'll never hear. Five is too many. I want answers, I NEED answers. Please be in prayer that I will not get the "well the pregnancy just didn't develop" or the horrid "this is nature's way of 'housekeeping' you know like survival of the fittest." Yes, I actually had a doctor say the latter to me. Pray that God's hand will be on the doctor I see today and the nurses I talk to. Let His heart be theirs today. I so desperately want to know why....

And he took the children in his arms, put his hands on them and blessed them.
Mark 10:16

Ebb and flow

Last Tuesday I was overjoyed to learn a new life was beginning inside me. I was certain that this pregnancy was going to grow and thrive. I nearly bought diapers, my heart was so sure! Last night, we found out that it was not meant to, that again we had lost a precious life. My heart aches and aches for the losses in the last four months.

In my grief, I am trying to be a better mommy to the three children God has allowed me to keep. I got up today and hugged and kissed all of them and held them tight. I told them how much I love them and how special each of them is. Kaeleigh, my independent princess, Avery, my tender hearted snuggle bear, and Kaden, my fiesty survivor!

I am blessed to have my family and friends to share my heart with. Those whose words comfort me and whose prayers lift me up.

Goodnight sweet baby, until I meet you in Heaven....

All this is evidence that God's judgment is right, and as a result you will be counted worthy of the kingdom of God, for which you are suffering. God is just: He will pay back trouble to those who trouble you and give relief to you who are troubled, and to us as well. This will happen when the Lord Jesus is revealed from heaven in blazing fire with his powerful angels. 1 Thessalonians 1:5-7

47 53

Intersting number combination, huh? Lotto numbers, perhaps someones ages? Nope, those are the numbers from Kaden's test! Perfect lung function, which who has that, is 50 50, so our Father, once again, has showed His grace and mercy and Kaden's blood flow to his lungs is a close to perfect as you can get! Dr. Malpass said, "Once again, Kaden has astonished us." He expected the results to be more 60 40.

Thank you Lord for Kaden's continued health, for Your outpouring of blessings on our lives. Thank you Lord for special friends to share life's trials and joys with! Father, bless my friends Rebecca and Dee, you know their needs. Give them your peace when they need it. I praise you for my family and home and my friends. Amen!

Psalms 20:1-8
1 May the LORD answer you when you are in distress;
may the name of the God of Jacob protect you.
2 May he send you help from the sanctuary
and grant you support from Zion.
3 May he remember all your sacrifices
and accept your burnt offerings.
Selah
4 May he give you the desire of your heart
and make all your plans succeed.
5 We will shout for joy when you are victorious
and will lift up our banners in the name of our God.
May the LORD grant all your requests.
6 Now I know that the LORD saves his anointed;
he answers him from his holy heaven
with the saving power of his right hand.
7 Some trust in chariots and some in horses,
but we trust in the name of the LORD our God.
8 They are brought to their knees and fall,
but we rise up and stand firm.

The Test

Everything went smoothly, as we prayed for. Kaden only whimpered a little when they had to stick him twice to get his IV going. He's so strong and courageous to be so little. The nurses were very kind, one of them was a heart mommy too! Dr. Avant was wonderful and took the time to make sure we understood what was happening and what to expect from Kaden. He came out of his little slumber and boy were we in for it. He is extremely cranky and clingy, but who can blame him. So my radioactive heart baby does not do well recovering from sedation. Lesson learned! He's currently sitting on the recliner watching Mickey Mouse Clubhouse and shouting his demands to us.

Thank you Lord for giving us the ability to face today and know You're in control! I will update as soon as we have the results! Thank you all for your prayers, I would have been a total wreck without them!!

“[For the director of music. Of David the servant of the LORD. He sang to the LORD the words of this song when the LORD delivered him from the hand of all his enemies and from the hand of Saul. He said:] I love you, O LORD, my strength. The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold.”- Psalm 18:1-2

Tomorrow

Ok, I'm nervously blogging at 10pm. Not really unusual for me, but not the best idea when we have to be up and out of the house by 7:15. I can't bring myself to sleep when my little guy is laying here next to me, blissfully unaware of what tomorrow may bring. Kaden will be sedated around 9am or so tomorrow and have xrays taken of his lungs and branch arteries to make sure his lungs are receiving correct amounts of oxygen. I am confident that God will continue to provide for us no matter what the outcome. Pray for all to go well with sedation and that he has no complications with it. Also pray that I will be able to handle to outcome if it means going back to Charleston. I also have an unspoken request that affects me most of all and my family, Tim, Kaeleigh, Avery, and Kaden as well. Pray for health for all of us.

Were those enough requests for you???

Here are a couple of pictures from the kids celebrating Annabelle's First birthday. She celebrated in the best place of all, heaven!!






But I will sing of your strength,in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble. Psalms 59:16

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!

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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.

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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