Sharing her story

I love talking about CHD's and Maddie's heart journey. (hence: this blog) My goal is that it provides awareness for congenital heart disease, provides hope and inspires others. This year, I submitted her story to the national CHD organization, Little Hearts. You can view her story here.

The Wet Engine

One aspect of our heart journey that I've never grown tired of is learning about the heart. It's such an amazing, complex organ. I had never been intrigued with it before knowing our daughter's heart was broken. Now I want to learn everything about it and I'm mesmerized by it. It weighs eleven ounces. It feeds a vascular system that comprises sixty thousand miles of veins and arteries and capillaries. It beats a hundred thousand times a day. It shoves two thousand gallons of blood through the body every day. It begins when a fetus is three weeks old and a cluster of cells begins to pulse with the cadence of that particular person, a music and rhythm and pace that will endure a whole lifetime. No one knows why the cluster of cells begins to pulse at that time or with that beat. These cells undergo what is called spontaneous depolarization. Channels inside these cells begin to leak sodium and the wash of sodium sparks the trading of potassium and calcium back and forth which inspires an electrical current which augmented is the beat of your heart. These cells are infectious, as it were; if you put them alongside any other type of cell in the body, they make the other cells beat to their beat. ~an excerpt from chapter II, Heartchitecture

My favorite book. By far. (Thanks Barb.) I read it exactly two years ago, while still pregnant with little miss, and have since re-read it several times. It's written by a heart dad, Brian Doyle, about his son born with a complex CHD, and the surgeon who saved his son's life. Not only does he share the scientific side of the heart, but he explores the emotional, philosophical and spiritual side of the heart. It's moving and changed my perspective on having a baby born with CHD.

It's CHD Awareness Week

Like last year, in honor of CHD Awareness Week Feb. 7th-14th, I'm planning to post something daily that's relative to the "heart". We've learned so much through this experience and feel inclined to help spread awareness and mostly hope...something that Miss Maddie has given us so much of!

more on the house project...

Thought I better document our house project with a couple of recent pics. I haven't posted our progress since here. It's really moving along and I'm sure since I just said this, we're jinxed and it's now going to drag on and take forever. Oh well, I'm just excited to share about what takes up 99% of our time...

It's all sealed up for inside work now and sheet rock started this week. The outside still needs painted as well as brick layed. We're both keeping busy calling and meeting with subs, getting bids, researching products, and trying to finish up all of the loose ends. But it does feel like we're on the down-hill slide now. Maybe the next time I post about it, we'll be living there ;)

Our San Diego Vacation

I'm a little late posting about the fun trip we recently had to San Diego. Bryan's parents treated our family with the trip for Christmas and we enjoyed the So Cal sun, sand, the zoo, Legoland, and of course, Shamu. The kid's loved playing with their cousins for the week and our beach house in Oceanside was second to none. It was a fabulous vacation and so nice to enjoy beautiful 70 degree weather in the middle of winter! Of course, Maddie started getting sick the day before we left and by day 3 on the trip, her illness peaked and warranted a trip to the ER at Rady's Childrens Hospital in San Diego. After the horrible night she'd had, I was tired of the "wait and see theory" and her lethargic nature was getting to me. So, long story short, her high fever, horrible cough and crummy sats were due to a virus. Another one. Anyway, the nice ER doc we saw made a phone call up to Dr. Vernon, her cardiologist, to double check the plan of attack and what a small world, they were both Fellows at Boston Children's Hospital together. It was a relief taking her and the care we received was great. The second half of the trip was wonderful and the kid's were fulfilled with many fun outings and memories. Thanks Pa and Grandma Allred for such a great vacation! We loved it and look forward to going back someday! It's definitely a favorite vacation spot for us and spending time with family was the best part of all.

We even got to see our heart friend, Carlie! It was so nice visiting with Shannon (Carlie's mom)and the girls again and to see Miss Carlie in action was such a highlight! She's doing awesome with her 1/2 heart and it brought many smiles to our faces! Thanks for making the drive down to see us Mason Family :)

Today I'm tired. I'm sad. I try to stay away from the blog when I'm feeling this way but I gave into sharing my thoughts this time around. My heart goes out to a sweet friend of mine. She lost her 5 month old nephew to SIDS, her sister's baby. This family has endured so much over the years with the unexpected loss of their mom and now this untimely death. In times like these, I wonder why does this happen to such good people? Her sister now has to face the unimaginable...the loss of a child, which is something that haunts me daily, with my healthy boys, and especially with my baby with a broken heart. It's any mother's worst nightmare.

Life can change so quickly. We're told to embrace each day and moment we have here but how do you do this when you're hurting? I'm tired of reading about babies and children lost to CHD each and every day. I'm so saddened when hearing about causalities such as this. My heart goes out to too many families who are dealing with the loss of loved ones. Those who are trying to live a normal life despite having to deal with chemo, radiation, surgeries, and illness. The destruction and grief in Haiti. I'm tired of watching my little girl endure too many procedures, pokes, and knowing it's never over for her. Knowing that her heart can never be fixed is simply exhausting. There is no cure for her or for many of our little heart friends. I want to take it all away for her and I don't see any "fairness" in any of this. Just as my friend Michele would like to take her sister's pain away and fix it, I too want to fix my daughter's heart and spare her from any more pain. I guess it's that helpless feeling or maybe it's just the time of year that's brought me into this slump. The season I was in exactly 2 years ago from now was the hardest time of my life. We had just learned that our baby would be born with a broken heart and our lives were forever changed.

I know that I am blessed to have 3 beautiful children, a wonderful husband, freedom, a great family and support system, and many more blessings that I could list. Why is it that I'm still down? I really have no right to feel this sad when there are so many worse off than me today and I have so much to be thankful and happy about. I have my children. My heart baby is doing well. We have been the lucky ones.

In my times of confusion, doubt and sorrow, I listen to music. It is therapeutic for me and seems to feed my soul. I also bottle much of my feelings up over time, then when something like this happens, it seems to unleash itself. After talking to my friend Michele yesterday, I did just this. I unleashed. I stayed up much too late, reading my bible, praying, and listening to music. I wanted to feel some peace and feel closer to Him. I wanted to gain some understanding. As I was searching for something to make me feel better, I came across this song. Just when I was wavering in my faith, I was simply reminded through these lyrics that we do have an Everlasting God. He's always there. In these times when we're angry and so filled with sadness, asking Him why, we are to call on Him. And only hope remains, through Him. Someday our pain, grief, and worry will all be gone, all because of our Savior and the price that was paid for us. Our Redeemer. Our Everlasting God. Even though there is much to be sad about, my heart is filled with His promise.

One thing I know that I have found
through all the troubles that surround
You are the rock that never fails
You never fail

One thing I know that I believe
through every blessing I receive
You are the only one that stays
You always stay

You never change
You're still the same
You are the everlasting God

You will remain
After the day is gone
and things on Earth have passed
Everlasting God


Everlasting God by: New Life Worship

Four Christmases

Yes, we enjoyed 4 Christmas celebrations in 3 days this year...we are fortunate to only have to travel within a 15 mile radius of our home to all of the locations. Phew. Enough dragging of kids, presents, side-dishes, and toys was done within that short distance to last us for awhile!!! First stop was Christmas Eve at my parents. A delicious prime-rib dinner, home-made gifts this year, Pictionary and fun with Nany & Ba, Great Grandma Shirley, Jason, Sybil, Jett & Tripp and Ryan, Jessica & Kylie.

Christmas morning was spent at home with our family of 5 in our quaint little home. Santa was good to the kids this year and followed through with most of their requests...my favorite part of the morning was hearing Jace excitedly wake up Caden saying, "Cade, wake up...Santa came...he brought us presents and guess what, we WERE on the nice list!"

Christmas Day was spent at Papa & Grandma Allred's with Mike, Lesa, Savanna & Boo, Mike's parent's, and Andy, Danyel, Jadyn, Wyatt, Randi & Jilli. We always have a relaxing day there with our tradition of a yummy brunch, visiting, being spoiled with gifts, and just lazing around. Oh yes, a football game or two is usually watched as well!

Christmas get-together #3 was with the BIG Allred family on the 26th...sorry for hardly any pictures...spent too much time yapping. This is the biggest family gathering we attend. Bryan has 37 first cousins and 30 of those cousins are married and when you add in how many children this generation has...my count is "roughly" 58 great-grandchildren!!! And most are just getting started :) Not all are able to make it, but it's still a full house!

And our last Christmas celebration was with my dad's side of the family at Aunt Kerry's. It was very relaxing, we enjoyed great Mexican Food and were able to un-wind a bit. Pinochle is the game of choice for the Stewart's and if you don't play, you have to entertain the rest with a special talent. We've had some pretty funny talent shows in year's past. This year, my little bro was the one and only talent, we rocked out with him on Jake's new guitar. Jace and Cade enjoyed playing video games and ping pong. Good times!