May God Bless your little soul Colin

A parents worst nightmare. A fear that we "heart families" always have in the back of our minds. (Well, mine and a couple other heart moms that I know.)
Colin w/ his mommy.

Colin w/ his daddy... most likely watching sports on TV!!!

Colin was a superman...there is no doubt about that.

We have posted about Colin in the past. The last post was in March.

Colin passed away unexpectedly on Sunday night. It seemed he was doing so well!!
I am absolutely heartbroken and shocked.

You can read his story here.

If you could, please leave a little message for his wonderful family. I know it would mean a lot to them. Colin had such a loving family.

This is a very touching video that Colin's parents put together of their short life with Colin,

to the song "The Dance" by Garth Brooks.

I can't help but smile when I think of what my fellow "heart mom" friend (Kathy, mommy to Isaac) used to call Colin...

Mr. Serious.

Colin and his family could use your prayers right now

On Valentines Day, I had requested prayers for baby Colin (he has same defect as Matthew) ~
he was having his second open heart surgery that day in Boston.

He isn't doing very well.

Mel and Tim are requesting prayers for their little Colin. Here is his site if you would like to go leave an uplifting comment. We sure loved comments when we were in the hospital with Magoo.

Thank you so much, WE KNOW THE POWER OF PRAYER! Matthew is proof. My heart aches for the family...we know how hard this is on them.

Isaac's Blog

Isaac's Blog
The Rollers found out tonight that Isaac will need a third heart surgery, scheduled this coming Friday at Stanford. Poor little guy, he just had a 13 hour surgery in November ~ they've only been home for one month. This was very unexpected, please keep the Rollers in your prayers.

To all our Prayer Bears!!

Here's a cute little fella named Elijah that will be having open heart surgery tomorrow!

He has the same type fourfold heart defect that Matthew was born with ..... his mommy found Matthew's blog while looking for information on our hero, Dr. Frank Hanley. Here is Elijah's blog so you can go watch for updates tomorrow. Mommy has said they will try to update during the day.

We all know the power of prayer ... and this sweet family is struggling as we did. It's so hard to turn your precious baby over to the surgery team. We know that baby Elijah is in God's loving hands.

ECHO this coming Monday

We are taking Matthew in on Monday to his pediatric cardiologist for an ECHO of his heart.
I am very nervous about this ECHO. On December 1st, we were at the halfway mark for a third heart sugery.

Let me explain to those of you who don't already know this... Matthew had a (cadaver) valve replacement last March. It started leaking by May and was rated a 2. Docs rate the leak from 1 to 10, 10 meaning it's time for a valve change. By December 1st, it was rated a 4.7. It has been almost 5 months and I'm so afraid it'll be an 8 or 9.

My heart hurts when I think of it. We are trying to prepare ourselves for a surgery this year ... well, as much as you can prepare yourself for heart surgery on your child!

The problem w/ these cadaver valves ~ the surgeons can't say how long they will last. There are too many variables ... they can leak, they can calcify, etc. It all depends on their little bodies. Each kid is different. To me at least, it doesn't seem to be a good sign that his leaked so soon.

Well ... we'll find out soon enough ... With any luck, it'll only be a 5 or 6!

I frequently think of what my e~buddy, Timmy from The Special Zipper says... " it's a roller coaster ride when you have a child with a congential heart defect." What a true statement. Tim is from Australia, he has had his fair share of scares and sugery w/ his adorable little cardiac boy Connor. If you get a chance, you should drop by his blog ...he has written a sweet post about our other e~buddy Dan of 0ddness in England. Dan lost his beautiful 4 year old daughter Bethany two years ago to problems related to her heart.
Dan has been MIA for a couple months now and we are trying to cheer him up.

I thank God for the support we get from other families of cardiac children. And of course from all of our friends and family. Support is what helps get us thru it all.

Quick Baby Surgery Update

Josh called us this morning and so far ... everything is going great w/ Lincoln's heart transplant. They are thrilled and for the first time in his life they saw 100% oxygen saturation levels. He's doing very well ~ but, the next couple days are critical. They are forever grateful to he donor family and are keeping them in their thoughts and prayers. What an amazing family the donor family is. They have given the ultimate gift of life.

Lisa called this morning and this afternoon to give me updates on Mason. The surgery went well and Mason is doing good. His chest will remain open for a day or so until the swelling goes down. The next 24 hours are also critical. It is always a stressful time for us parents when they close the chest back up. Matthew's chest remained open for four days and he experienced a bit of difficutly, but then again... Matthew's lungs were so badly damaged.

I will allow you to go the their blogs for further updates. The links are below.

Thank you so much for all your concern and prayers. That is all we "heart parents" can ask for!!

The Carter's and Manning's are humbled by all the well wishes!

Mason Manning in surgery NOW

I just spoke w/ Lisa ... they took little Mason back for his surgery!! They moved him up to first surgery instead of second surgery!! YAY! Please keep this family in your prayers ~ it will be a long day for everyone... surgery is scheduled to be approx 7 hours. God bless Dr. Hanley and his team and baby Mason. www.littlebabymanning.blogspot.com

Lincoln Carter getting a heart transplant tonight!

This is the Post written in little Lincoln's blog by his daddy, Josh:
Lincoln Got A Heart!
We are so excited to share that we got a call at 8:30 this morning that there was a heart offer for Lincoln. Unlike the previous offers...this one is perfect for Lincoln. We don't know much about the donor nor can we get into the details...all we know is that it is a great match! Our hearts are filled with joy and excitement for Lincoln yet our hearts break for the family who lost their child to make this possible. Lincoln is scheduled to go into the OR around 8:30 PM. The surgery will last most of the night and into the morning. We are very very nervous! Please be praying for the surgery and that God orchestrates the whole event beautifully tonight as He has been doing from the start. Also be in prayer for the donor family! We will let you know how things go as soon as things settle down tomorrow! Thank you all so much for everything....We love you all and will talk to you soon. Pray! Pray! Pray!
J&K
www.littlelincolncarter.blogspot.com

A special week to recognize people born with heart defects, to remember loved ones who lost their battle to CHD, and to honor the dedicated health professionals who work with us.

More than 40,000 babies are born each year in the United States w/ a Congenital Heart Defect.

Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.

Despite the fact that CHD affects millions of families, a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

Two little guys that we know, are in the hospital now.

Lincoln Carter ~ he's been in hospital going on 8 months, his entire life ... waiting for a heart transplant at UCLA. Josh & Kristin are away from their home.
www.littlelincolncarter.blogspot.com

Mason Manning ~ born this past Tuesday... having open heart surgery this coming week up at Stanford. Justin & Lisa are away from their home.
www.littlebabymanning.blogspot.com

Matthew's portrait

This is for the newcomers to Matthew's blog.
A brief story of Matthew's life with some pretty sweet pictures of him.

Click on the link below.
http://tchin.org/portraits/matthew-9.htm

Baby Mason Manning is born on Feb. 7th

We have special friends here in Las Vegas named Justin and Lisa. Lisa was 20 weeks pregnant when she found that the baby boy she carried had a heart defect. He has Tetralogy of Fallot,
pulmonary stenosis and disontinuous pulmonary left branch. They are currently at Lucille Packard Children's Hospital at Stanford. World famous, Dr. Frank Hanley will be perfoming the open heart surgery... hopefully next week sometime. They were blessed w/ room availability at Ronald McDonald House.

They are an absolutely adorable couple with a 15 month old boy.

As Mike and I know all too well, it is SO very hard to be away from home during such a stressful and emotional time!! We would like to ask everyone to keep Justin, Lisa and the baby in their prayers.

Here is the link to their blog if you'd like to send well wishes or follow the progress of the new baby, Mason. He was born on the first day of CHD Awareness Week.

Thank you!
http://www.littlebabymanning.blogspot.com/