Friday, February 28, 2014

Curling

 
 
She's got this new love affair with curlers.
I find it cute and comical at the same time.
It reminds me (and her too) of great grandma (which I adore!).
But who doesn't look silly in curlers.  I smile every time I see this.

Wednesday, February 26, 2014

Stylin'

 
 
Too cool for school on President's Day.
Hitting the zoo with Mom (and cousins!).

 
 
 
 

Monday, February 24, 2014

The REAL Lady & the Tramp




 
Yep, H and Jeter shared her spaghetti for dinner.
Wish I would have been able to video this....it was hilarious!  And honestly, i don't know which one was enjoying it more.
All they needed was some meatballs :)


Sunday, February 23, 2014

Belated Valentine's Day

Happy Belated Valentine's Day!
I was so busy with the CHD posts, that I completely blew this holiday off (which didn't bother me all that much!).

Yes, Ed spoiled me this year with flowers and cherry sours (you know, those little sour red balls of GOODNESS!!! a.k.a. my FAVE candy!!) but the most Valentine's Day fun was creating the girls'     v-day card boxes for school.

 
The cutest owl and Olaf you've ever seen, right?!??!?!
 



Saturday, February 22, 2014

He's definitely an Anibal

Last week, we had our final ultrasound.

He's definitely an Anibal.
Check out his adorable button nose.
I love that all of my kids' nose looked exactly the same (just like their handsome daddy's) in their ultrasound pictures.

Remember this is a picture of a picture....so the quality kinda sucks.  Sorry!





































And in less, yes less, than 6 weeks (40 days, but who's counting), we'll get to see him in person :)

Thursday, February 20, 2014

Hell ya, I'm going to brag!

Ed and I have expectations for our daughters and their school behaviors and performance.
We expect them to treat others the way they want to be treated (Nothing like the Golden Rule!).
We expect them to work and study hard, challenge themselves, listen , and respect their teachers.
We don't talk about these things every day, our expectations are often times 'just there'.
Which means we often just take it for granted.

Because both of our daughters perform high (behaviorally and academically) in school, we've been allowed to take it for granted.
But I know it's just wrong.....we shouldn't take these things for granted.
What they are doing and accomplishing is AMAZING and NOTEWORTHY and should be talked about....A LOT!

We always get a really good reality check during teacher conferences.
My girls consistently come home with high marks and a folder full of items/comments like these:

 
 
And these comments and marks go on and on and on.

We are both so very PROUD of E and H and want to shout it from the rooftop!  (Cuz, we're their parents...so we're PROUD, COMPLETELY AND TOTALLY biased, and have ZERO shame Bragging our butts off right now!!!). 

Girls -- Thank you for working hard, showing respect and seriously being AMAZING!

We promise to work very hard to stop taking this (and sometimes life in general) for granted!
Keep being AMAZING!
We Love You!




Thursday, February 13, 2014

CHD Awareness -- Day 7

Sometimes sharing all of the CHD facts can be very depressing.
Lots of heart-wrenching stories, children suffering and many becoming Heart Angels.
This is the startling, hard to face, truth about CHD.

But I don't want the entire week to transpire and only to focus on the 'ugly side' of CHD.
Because let me tell you, there's a TRIUMPHANT side too.
There's a 'God held my child in His hands' side.
And mended his little heart through the skillful hands of his surgeon side.
Here's what it looks like:


 
This is just one of the MANY, MANY children who have battled CHD and kicked it's wicked butt!
And Ed and I are blessed beyond words, that he's ours.
Our son is CHD Warrior.
He is OUR HEART HERO!

With your help, there can (and will!) be more and more CHD survivor's like EIV!

Please Spread Awareness whenever possible.
Donate your time, talent or resources to helping the cause
And most of all pray for children and families impacted by CHD.

Wednesday, February 12, 2014

CHD Awareness -- Day 6

CHD Awareness week is almost in the books for another year.
I found this great summary that captures much of the details of CHD that are important to know.



congenital-heart-defect

Tuesday, February 11, 2014

CHD Awareness -- Day 5

The overwhelming feeling that I had during my son's CHD journey was that I felt alone.
Thank the Lord, I had my husband, my family, my cousin, my friends...but I didn't have anyone who 'knew' what I was going through.
Who 'knew' what it was like to have a heart baby.
Who could truly, from first hand experience feel the way I did.

Then Kitty and Heart Heroes entered my life.
It's nearly impossible for me to sum up what that has meant to me and how it has impacted my life.
(and I'm sure you don't want to read the novel that I would write if I attempted to put it all down and I'm intentionally trying to be brief!)

First and foremost, I found heart moms.  Moms who 'knew'.
I also found a forum for me to understand and advocate for CHD children, families and awareness.
But probably the most important, I found a passion.

I always said after EIV's surgery and when he received a completely 'clean' bill of health, that the most important thing was for me to give back.  Heart Heroes has allowed me to do that in ways I never could have imagined.

It's important for  me to share with anyone that is affected by CHD in any way that YOU ARE NOT ALONE!!
There is a large heart community in our country there to support and love you.
Of course, I'm completely biased, but Heart Heroes is the BEST place to find those people who 'know'!
Check out our website: http://heartheroes.org
Or find us on Facebook
Or simply give me a call.
 

Monday, February 10, 2014

CHD Awareness -- Day 4

Congenital Heart Defects are the #1 leading cause of birth-defect related deaths.

Today, I ask each of you to pause for moment and say a prayer.
Say a prayer for all of the children who are now Heart Angels.
Those who  lost their battle to CHD.

Pray for their families.
To give them strength, understanding and peace.

Sunday, February 9, 2014

CHD Awareness -- Day 3

Just like every child's CHD is different, so is their journey.

Our journey looked like this when it started:


























Look at that face.  Oh dear Lord, it still melts my heart.
He doesn't look sick.
You can't tell that anything is wrong, can you?

That's kind of how the first four months of our journey was.....
.....on the surface......everything 'appeared' to be ok. 

But thanks to our amazing pediatrician, we KNEW what to look for.
We had been educated in the symptoms of congestive heart failure:
rapid and/or laboured breathing
extreme lethargy
turning blue
inability to feed for 'normal' periods of time
lack of weight gain
so when EIV started to show these symptoms, we knew to pursue his heart condition.

The next five months of our journey were extremely challenging.
Even though EIV was displaying obvious signs of congestive heart failure, his echos were not conclusive enough to prove that it was ONLY his heart causing the symptoms.
We advocated and continued to monitor and document his symptoms.
Our detailed documentation of his symptoms helped us and his medical team determine the right course of treatment.  For EIV, it was open heart surgery at 9 months old.

His journey was unique to EIV and his heart defect.

Today, I want to bring awareness to recognizing the symptoms of congestive heart failure.
Not to scare or frighten anyone....just to bring knowledge.   Knowledge is power.
Often times CHDs go undetected or simply misdiagnosed at birth.
Knowing these symptoms, documenting them and discussing with your health care professional can help save a child's life:

From http://www.cincinnatichildrens.org


Symptoms are different for children of different ages. In babies, regardless of the cause of congestive heart failure, the end result of significant congestive heart failure is poor growth. This is because in babies with congestive heart failure a significant amount of energy is used up by the heart as it works harder to do its job.
In addition, as the lungs fill with fluid, it becomes more difficult for babies to breathe and they will use more of the muscles of their chest and belly to compensate.

These babies will also have a harder time eating and may not eat as fast or as well as other babies. They can become very sweaty with feedings because of the extra work needed to eat.
Some babies work so hard that they wear themselves out and sleep more or have less energy than babies without heart problems, although this is hard to gauge as different babies will have different sleeping habits regardless of whether they have heart problems.
All of this extra work will result in the baby's inability to take in enough nutrition to grow, which is an infant's top priority in the first year of life.

These symptoms will not usually occur as soon as the baby is born. This is because the pressures in the lungs of all babies are equal to the pressures of the rest of the body when babies are first born.
It can take anywhere from two days to eight weeks before the pressures in the lungs fall to normal. Babies with ventricular septal defects or other sources of extra flow to the lungs can often feed and grow as expected for all babies in the first one to two weeks of life because their high pressures in the lungs will prevent excessive blood flow to the lungs.

The symptoms of poor growth -- difficulty with feeds and fast breathing -- will gradually appear during the first or second week of life as the pressures in the lungs begin to fall and blood flows across the hole into the lungs.

Babies with obstruction to blood flow out of the left side of the heart or a weak heart muscle may have these symptoms much sooner, sometimes in the first few days of life depending on the degree of obstruction or weakness.

Older children with congestive heart failure are beyond the time of rapid growth and therefore do not have major growth problems like infants. Their symptoms are usually related to their inability to tolerate exercise. They become short of breath more quickly compared to their peers and need to rest more often.
Shortness of breath can occur even with minimal exertion, such as climbing stairs or taking a walk if the heart failure is severe. These children will often lack energy when compared to their friends, although this may be harder to determine because all children have different levels of energy.
In children with heart failure, passing out during exercise may be very serious and needs to be evaluated immediately. Appetite may be poor when heart failure is severe and weight loss or lack of weight gain can be seen even in older children.

Some children will retain fluid and will actually gain weight with heart failure and appear puffy. As it is harder to determine parameters for heart failure in older children, it is important to look for change in exercise capabilities or progression of symptoms with time.

Saturday, February 8, 2014

CHD Awareness - Day 2

I've got to be honest....before EIV was born....I'd never really heard anything about Congenital Heart Defects (CHD).  Looking back now, that's astounding me.  And sad, extremely sad.

You may ask "Why are you so shocked that you had no knowledge of CHD?"

Well....Let's start with some facts:

*1 in 100 children worldwide are born with a CHD.

*CHDs are the #1 occurring birth defect and leading cause of birth-defect related deaths.

How did I have 3 children before I knew these facts?
That's really crazy to me.
I knew lots about pediatric cancer, juvenile diabetes, and Downs Syndrome...but honestly, I can't recall one conversation in which CHD was mentioned.

Why aren't there efforts to educate/inform parents about CHD?
Why don't we share the symptoms of congenital heart failure?
Why does it appear to be contingent on 'if your pediatrician catches it'?
Why did it take until the year 2013 for a simple screen (pulse ox) to be a mandatory newborn health screen in most states?
Why aren't we (collectively as a nation) talking about it?
Why aren't we funding research?
Why aren't we doing more?

There's lots and lots of questions that I ask, and don't understand the answers.

The #1 reason for birth-defect related deaths deserves ATTENTION.
I'm doing my part (but certainly not enough) to bring it to YOUR attention.
If you or someone you know has CHD-related questions, please send them my way.
If you or someone you know needs support because their lives have been affected by CHD, please send them my way.
Together, we can make a difference and spread awareness.
Together, we can help saves lives.



Friday, February 7, 2014

CHD Awareness - Day 1

Today is the first day of CHD (Congenital Heart Defect) Awareness Week 2014.

Today:
















































 
 
 
Today, I am a heart mom.
Today, a simple gesture shows my support for my hero, my son......and the hundreds of thousands of Heart Heroes worldwide.
Today, I am thankful to those who supported my son by donning red too!
Today, I'm excited to kick off a week of posts to spread awareness.