God alone is Sovereign

1 Chronicles 29:11

Yours, O LORD, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is yours. Yours is the kingdom, O LORD, and you are exalted as head above all.

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Friday, October 29, 2010

Had to Share....

I saw this on another heart Mom's BLOG and I had to share with all my BLOG readers.... enjoy! I thought it was awesome!

Click here to watch this amazing video.

Tuesday, October 19, 2010

Germs and Fall Fun!

So, I have posted before on my BLOG that I am a germaphobe. I wasn't like this before I became a heart mom. Never before Anna Grace was born would you have seen me at the playground dousing my child with hand sanitizer and threatening him with serious punishment if he even dares put his thumb in his mouth before washing his hands (yes, Zach is a thumb sucker). But, life is much different now and everywhere I look I see germs and viruses. I teeter on the verge of being "obsessive" about this. It's been difficult for me - walking the line of living "normally" and still being extremely careful of germs. As we approach cold/flu/RSV season I realize how serious these illnesses can be to a heart baby. So, what's a heart Mom to do?????

I know that every family is different and every family handles the winter differently based on their doctor's advice and their personal judgement. I eer on the side of caution (understatement), but at the same time I really do want my kids to live as "normally" as they can. So I am trying to do "normal" things with them while at the same time minimizing our risk of exposure to germs. I have found that one of the luxuries of being a stay-at-home Mom is that you can do most "normal" things with your kids on weekeday mornings - early - and things are pretty much deserted. So... all of the fun..... no lines.... and minimal exposire to other children. Hopefully next winter we can just be "normal" and not even have to try to go places at "off peak" times, but I think for this winter this is how we are going to roll.

With all that being said, I was able to take the kids to a pumpkin patch and we had the place pretty much to ourselves. It was a beautiful Fall day and we had lots of fun. We had even more fun because Mom wasn't dousing the children with hand sanitizer :) Enjoy the pics.

Oh... to other herat Moms out there - I'd love to hear how your family handles the winter months - or specifically how you handeled your heart baby's FIRST winter - because I know things do tend to relax a little the older your heart baby gets. Thanks for your input :)

Awww... so cute!

I'm a big kid now!

Smile :)

I just need to get to that pumpkin Mom!!!!

Wednesday, October 13, 2010

Anna Grace - Cardiology Appointment

So, many of you know that Anna Grace had a cardiology appointmnet on Tuesday. Anyone who knows Anna Grace or who has followed our BLOG for any length of time knows that Anna Grace has serious anxiety around people and especially doctors. So, as her Mommy, I am always prepared for these cardiology appointments firstly with PRAYER and secondly with a whole aresenal of things to distract, bribe and otherwise entertain Anna Grace during her doctors appointments. I knew she would be having an echo done on Tuesday so I was loaded down with toys, bottle, snacks, DVD's, stuffed animals, pacifiers and anything else I could think of to keep her from screaming during her echo so they could get a good look at her heart. That being said.... they were able to get a decent echo of her heart on Tuesday after I stood on my head, spun in circles, hopped on one leg and promised her a pony (just kidding)! The findings of her echo were pretty good, kind of mixed really. Dr. R said she had good heart function, but that she now has a slight leak in her mitral (sp?) valve. He said we would have to watch that. Also you might remember that during her second open heart surgery (the Glenn) her BT shunt was not removed but it was "clipped" to restrict the blood flow through the shunt with the intention of removing it during her her third surgery (the Fontan). Well, yesterday's echo showed that there is blood flow through the shunt so he sent a copy of his findings to Dr. Bradley down at MUSC to determine what (if anything) needs to be done about this. We'll just wait and see what Dr. Bradley says about what we need to do. Also, at her appointment yesterday her sats we hanging out around 81 which was a tad bit lower than they were 6 weeks ago. Dr. R said we needed to watch that - he said it was fine if that's where they stayed, but didn't really want them to continue to decline. He did increase her medication but only because she has put on a little weight (19 pounds now)!
So... we have a scheduled appointment to see Dr. R again in December - he said that normally we would be switching to just seeing him quarterly, but with these new developments he wants to keep a close eye on her.
I have come to accept that this is just how things are going to be for her little heart. I go to these cardiology appointmens with no expectations and in the back of my mind always prepared to head to Charleston. I feel like if we get to leave her cardiology appointments and go home and not to the hospital then it was a GOOD appointment. I was so thankful last night to be crawling into my own bed with my family all under one roof and NOT making plans and preparing to go to Charleston. The Lord is merciful and I am so thankful!

(P.S. - Just to refresh your memory - Anna Grace's official diagnosis is: Tricuspid Atresia, Transposition of the Great Vessels, Aortic Coarctation, Patent Foreman Ovale, Ventricular Septal Defect, Pulmonary Stenosis)

I like this toy!

Hi Mom!

Let me take a little bite of this cookie!

Anna Grace on the scale - 19 pounds 0 ounces

Sunday, October 10, 2010

Logo for CHD

Here is what I believe to be the official logo for Congenital Heart Defects (CHDs). I am told it is red and blue to represent the red and blue blood that travels through the heart(oxygenated vs. non-oxygenated). If you have a BLOG - post this logo on your BLOG. Post it on your facebook pages - lets get people familiar with seeing it and what it means. We can each take this small step in a grassroots effort to start making people aware of Congenital Heart Defects. Awareness is the first step towards finding a cure. Please join me friends.... Statistics show that 1 in every 100 children is born with a heart defect. Lets find a cause. Lets find a cure.

Furniture for Sale

We are selling our well loved but still in good shape living room furniture. Asking $600 for the entire set:

1 sleeper sofa (queen)
1 sofa
1 armoire (solid oak)
1 coffee table (pine
2 end tables (pine)

Leave me a comment if you're interested. Thanks!

Thursday, October 7, 2010

What if God is speaking through something your not Listening to?

Someone inquired about what I’ve been listening to the last few days. His name is Shai Linne a Christian Hip Hop artist. He is the real deal. In one song he raps more Biblical truth than you will hear in most 30 to 40 minute sermons or in about 20 more traditional Christian songs. But why just take my word for it. Give a listen below to a couple songs and see what you think. If you’re anti Hip Hop, lay down your attitude and remember when you used to try and break-dance. Enjoy!

Tuesday, October 5, 2010

Heart Angels

I have a link here to a post by another Heart Mom. I think she did a beautiful job so please just click here if you have time and take a few minutes to read her post.

Resting in God's Soverignty today.....

Monday, October 4, 2010

What Causes This?

Someone asked me today what causes congenital heart defects. I found the below info and thought I would post it here to share with you. During all of our meetings with cardiologists all of the doctors said that there is no known cause. I hope the below statistics are informative - afterall, the more people who are aware of CHD's (congenital heart defects) the more people will be willing to help fund research to help find a cause and a cure. Obviously it is a cause very near and dear to me.

I was in the grocery store the other day and saw all these pink ribbon shirts and pink ribbon coffe cups and pink ribbon water cups with a big sign saying "proceeds to fund research in the fight against breast cancer" and I thought to myself.... now why couldn't there be something like this for Congenital Heart Defect research???? Maybe 10 years from now we will all be seeing items for sale on the grocery aisles with some very creative logo with a big sign that says "proceeds to fund research in the fight against congential heart defects". Hmmmm....... Not taking anything away from breast cancer research - please don't misunderstand me - I am thankful that there is a platform for raising money to fund that research, it is needed as it affects a lot of lives. But couldn't there be a platform for funding congenital heart defect research as well?

Anyway... here is the below promised info... sorry for getting lost on a rabbit trail. Pass it on PLEASE!

CHD Facts
CHDs can happen to anyone -- they do not discriminate. Yes, really ... anyone. Even to the parents who do everything right. Even for the mother who presents none of the risk factors for having a baby with a congenital heart defect.

Approximately 1 in every 100 children born in the United States is born with some kind of congenital heart defect. This is about 40,000 babies per year. It is the most common type of birth defect, yet most expectant parents have never heard of it.

There are approximately 35 known varieties of congenital heart defect.

Congenital heart defects claim twice as many children's lives as all types of childhood cancer combined.

For the most part, no one really knows what causes CHDs. According to Lucile Packard Children's Hospital at Stanford, 5-6% of CHDs may be related to a chromosomal abnormality, 3-5% can be explained by a single gene defect, and about 2% are due to environmental factors. Some CHDs are a combination of these factors. That leaves 85-90% of CHDs with no known or identifiable cause.

Oops... I fell in the water!

So I took the kids this weekend to one of our favorite places - Milliken Park. I love it because it is like a mini-forest just a few minutes from our home. We can get there quickly and once we're in the trees I feel like we're a long way from civilization. Once upon a time - bofore kids - I used to be an avid hiker. I LOVE being in the trees - I love the way it smells - I love the coolness that the shade of the trees bring and I love the way my lungs burn a little when I'm doing a rigorous hike. Well, I'm not doing any rigorous hiking these days with strict medicine and feeding schedules - so...... Milliken Park is as close as I get!!!! Anyway... me and Zachary and Anna Grace went hiking and once we got to our favorite little waterfall I set up the blanket on the ground and took Anna Grace out of the backpack to let her crawl around for a bit. Zachary was climing on rocks and otherwise enthralled with the water. One of his favorite things to do is throw pinecones into the water. Well, this time the pinecone got stuck in some debris in the water and wasn't continuing down the river as Zachary wanted it to - so he decided to "rescue" (his words, not mine) his pinecone - and oops... he fell into the water. This little video was taken right after the incident. You can see he wasn't shaken up in the least. Besides being a little wet we all had a great time. Oh, what fun we had together at Milliken Park!

Saturday, October 2, 2010

Anna Grace - October 2

Sorry for the lack of posts lately. We have been a busy family though. Last Saturday we hosted an EARLY birthday party for Zachary. He won't actually be 4 until January 26, but since we will be in the height of cold/flu season during his actual birthday there is no way we will be having a party then and since he didn't have a party last year (because we were in Charleston with a very sick baby) we chose to go ahead and have his party a few months early. It was lots of fun. We had it at a local park with friends and family and he was so happy to see and play with his friends. The cupcakes and presents were just a bonus - mostly he was excited about having his friends there with him. Anna Grace wasn't really crazy about the party and all the people, but she tolerated it all.

Brian has been diligently working on the new house. He has really been burning the candle at both ends and we will be glad when our home reno project is DONE. I have had to make some decisions the week about cabinet stains and countertops and although you would think this stuff would be fun for me it is HARD - it doesn't come naturally to me to do these decorating things and my mind has been swirling. I had to enlist the help of two friends to help me make the final decisions and I am glad the decisions are done - at least for this week!

As for Anna Grace, she has been doing just fine. Crawling and climbing and getting into her brothers things. It is sweet and awesome and I am thankful and amazed everyday. She goes back to the cardiologist on October 12. I am a little nervous about it just because it's been so long since anyone has looked at her heart. For now, I am just enjoying having her home and watching her grow.

I also want to give a Happy Birthday shout out to my Dad today. Today is his birthday and we won't be able to see him because he's in Texas and traveling to Texas right now is just not an option for us. Maybe one day, but for now the BLOG will have to do so HAPPY BIRTHDAY DAD - we love you!!!!