Hopeful Hearts

Maddie was featured in a CHD awareness video created for the Hopeful Hearts Foundation last year. If you'd like more information about this foundation, click here. Enjoy this wonderful awareness video!

Let's spread the word...its CHD week!

February is considered Heart Awareness Month but the CHD heartland considers this a very special week to bring awareness and honor those who have lived and lost due to being born with a broken heart. So how common are (CHDs) congenital heart defects?

• CHDs are the most common birth defects. CHDs occur in almost 1% of births.
• An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.
• Nearly 40,000 infants in the U.S. are born each year with CHDs.
• CHDs are as common as autism and about twenty-five times more common than cystic fibrosis.
• Approximately two to three million individuals are thought to be living in the United States with CHDs. Because there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.
• Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that the number of adults living with CHDs.

a winter update

I am already failing at one of my New Year's Goals of updating the blog more... I want to document these kids and what our days are like. I'm horrible about working on scrapbooks or journaling, so this blog is about the only bit of information we have and I'm realizing that my memory isn't what it used to be! So much blurs together! I can't let "I'm always busy" keep getting in the way! So here goes an update...

Jace played basketball this late fall-winter. His team did really well, playing other area 3rd graders. As you can see, these guys never lack in the personality department and they are a fun group to watch play!

Miss Maddie loves to perform...always climbing up on things, singing and talking like a talk-show host! She entertains me daily!

She had her winter preschool program at the end of January. She remembered her line from "Snowmen at Night" and sang her cute "Snowflakes" song with her class (phew, always makes this mom-teacher happy when her own child is prepared and ready!) Her favorite thing to do in the winter is "to go sledding" she shared. Too bad we haven't been able to do that this year, hardly any snow!

Maddie loves playdates! She and cousin Jilly had a fun afternoon together, playing dress-up is their favorite.

Sam is a Ham! His cousin Grady actually called him "Ham" for awhile when he couldn't say his "sss" and I'm afraid it might have stuck with us...it's cute. Sam loves to be silly, but he's quite shy with others. His hair is wild, he's started signing "more" "food" and "milk". He also says "Dorda" (Dora) quite clear as well as Mama, Dada, "ooice" (juice) and "nanana" (No,No,No). He blows everyone a kiss, he runs around fast with an agressive right-arm swing, he loves to empty-out cupboards and drawers and he is loved and spoiled by everyone!

Duck Hunter Jace = eating duck two weekends in a row...yuck!

Caden! He is such a great little skiier...he is fast and has no fear. I love watching him, heart palpitations and all! Cade loves us to call him "squirrelly" and he is just that! Always lots of energy but such a tender big brother to Maddie and Sam. I've loved watching Cade & Maddie's frienship blossom over this winter. Cade just finished "Little Dribblers" basketball but I didn't get a pic...

 We've gotten in quite a bit of skiing this winter. The boys are doing awesome and really enjoy it. They have to "wait" for mom often at the bottom of the slopes. We recently hit a very sunny, 45 degree day at Mission Ridge. Thanks to the inversion...home was in the 20's and sunshine never felt so good! Bryan and I have loved the time we've gotten on the hills with Cade & Jace. Fun memories have been made!

seeking with a whole heart

There are certain dates that resonate with us...birth days, our wedding day, the day we lose someone we love. These days are life-changing, life-altering if you will. It changes the path we're on-- adding to it or taking something away from the life we knew. Change occurs whether we willed it to happen or didn't. January 2, 2008 is one of those days for me. My life was altered forever more on this day and I did not see it coming nor did I ever dream of this.

Five years ago today, we were given our most life-changing news. Our unborn baby had a very complicated, serious heart defect. It was such unknown territory for us. We were not anticipating this news, hadn't even considered it going into that "re-do" ultrasound...now looking back, we were so naive about it all. Completely blind-sided is how I felt that day. You can read more about that day here.

The days months following the news are a bit of a fog for me. I found myself in more of a survival mode...just getting from point A to point B. There was so much to learn, so much to process and in such a short time. I had two little busy boys to also occupy my time as well as trying to accept this life change which added hospital stays, surgeries, endless doctor appointments, stepping back from what I was used to doing--trying to control and plan everything in my life. But I learned so much from being so tired and feeling helpless in it all...I learned what was important. I learned to let so much go, to let God handle it...I learned to rely on Him and on those who were there for me and my family, letting them help and serve when we needed it most and I must say, our burden was lifted. I learned that time is precious and fragile. Good health, being born healthy, is such a gift...something I would never take for granted again. I witnessed and lived in sadness and joy at the very same time. I learned to not plan too far ahead and just enjoy now. I learned just how powerful prayer can be. I learned to walk by faith. I learned hope. I live in this hope now.

As I watched Maddie peacefully sleep in her bed tonight, I was overwhelmed with emotion...thinking back to how lost, scared and completely heartbroken I was five years ago tonight...not knowing if I'd even get to hold my sweet baby with the broken heart. Tonight I kissed and held that sweet baby. She's 4, almost 5 if you ask her, she's pink, loves princesses and singing, has energy now!, bosses her brothers around and has grown into the most beautiful little girl, inside & out, than I could have ever dreamed of. In five years, my emotions have taken a 180. I couldn't feel more grateful or more fulfilled. Maddie's broken heart is not a mistake, in fact, I cringe when I hear the word "defect" now. She was made perfect in HIS image. She's such a blessing and I could not have made this growth any other way. I'm so thankful for this path we're on, I'm especially grateful that the Lord has gotten me here.

Jeremiah 29:11-13
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart."

Merry Christmas!

Wishing you all a wonderful Christmas!

Papa

 

Bryan's dad, our beloved 'Papa', passed away on Friday, Dec. 14th at 10:00 am at his home, surrounded by his loving wife and children. Funeral services will be Thursday, Dec. 20th at 11:00 am at the LDS Church in Royal Camp. Pa is already very missed and will forever remain in our hearts...

plans have changed...

Yesterday we took Maddie over to Seattle for a cardiology appt. with Dr.C and an echo. The plan was to have a check-up, exam and prepare ourselves for a 10:00 heart cath this morning. We had our hotel booked, boys' care figured out here at home and pretty much packed up the whole house preparing to be gone a couple of days. God worked some of His magic yesterday... Maddie's echo pictures were very clear (which is rare since her Fontan), showing Dr C those areas of concern that could only be helped through a heart cath. Her pulmonary arteries look as if they've grown, they are staying wide-open and her Fontan looked beautiful. She still has a little hole (the fenestration which he referred to as a pin-dot) in the conduit but after talking to Dr.J, her cath doc, they didn't feel Maddie would benefit from closing it...she's dependent on it and why mess with things if it's working for her? She has higher pressures and needs the pop-off for blood flow. Her aortic valve is still leaking but its mild so just something to watch but nothing to attend to. And, drum roll please, her O2 sats were 89%, which we haven't seen in a very long time! SO...Dr. C left it up to Bryan and I if we wanted to go ahead with the cath or not. It was an easy decision for us- NO. If all that Dr. J would be going after were the collateral vessels, we can wait. Dr. C did say it's inevitable that she'll need to go back in the cath lab in the next couple of years for some maintenance but we can wait until she shows us more signs, one being her sats staying in the low 80's. This would prove that those collaterals are really stealing blood flow. There really is no rhyme or reason to why her sats fluctuate in his opinion...it could be when she's run-down, trying to fight a bug or hers just will ebb and flow in the 80's. At home, she sats anywhere between 84-88%. Dr. C did say she is one of the lowest satters, possibly the lowest satting Fontan he sees in his practice. But she's doing well, and we'll take it. We will follow-up in 4-6 months with her unless something pops up, unexpected of course. I am amazed by Maddie. She is truly a little miracle and continues to bring so much joy and surprise to our lives! In this world of CHD, things can change, very quickly, so we'll take this! Hearing some good news is so good for our hearts right now. As we were leaving her appt., she was so funny. She tipped her head back, put her hand on her hips and told an audience of nurses (she's a little adored by the staff at Children's) "I don't have to have a cath anymore!" Spunky, yes. I believe this spunk has helped get her this far.

Getting this news yesterday really felt like an answer to prayer. Bryan's dad is barely hanging on. This past month (really, months) has been so difficult for our family...anticipating the inevitable, watching him die is very, very hard. Papa is one tough guy, he has willed himself to keeping on and his determination has been amazing to watch; a little frustrating, but really TOUGH sums him up. I'm so glad my kids have that in their genes. Having Maddie's heart cath on the horizon has been a struggle- wondering at times if God is really hearing our prayers, how are we going to do this with all that we have on our plates...well, I can say without a doubt that HE DOES listen. His timing is perfect and it isn't always our timing but knowing that He works all things for His good is such a blessing. The news yesterday brought some much needed light to a dark time we're experiencing. Restoring some faith, looking to him, THANKING HIM...this is what everyone needed.

But I can say, whether we were in the pre-op area waiting for her procedure or home getting the boys ready for school this morning, my hope and trust remains in Him. He has shown us a tender mercy in one of the most difficult seasons of our life, losing a parent, and we thank Him for this mercy. He is there, He willingly shines His grace upon us, always. I thank God for this time, as difficult as its been.

Romans 8:28

^"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Miss Maddie doing what she does best...loving on baby brother!