His Heart

I first want to say that I KNOW that God has a purpose. A purpose for everything. I haven't posted about our angel boy's doctor appointment a couple of weeks ago simply because I've been doing other things. I'm going to start with what happened today and work backwards (somewhat).

Our angel needs heart surgery. Our hearts are broken. We found out today at a cardiology appointment that he has both a small VSD and left ventricle to right atrium shunt. The VSD is so small that it really is not something to be too concerned about The tissue in that area should and would eventually close the hole without any intervention. The shunt is what will cause a problem. At this very moment you would never know he has a heart defect. No bluish coloring, heaving breathing, sweating, inability to gain weight...nothing. But, if left untreated those things would begin happening. Maybe we would notice things in a year or 2 or 7, but the defect at some point would begin affecting him.


The beginning- when we first learned about our angel we were told that he was diagnosed with a severe heart defect (by fetal ultrasound) early in his birthmom's pregnancy, but a later ultrasound showed no defect. No defect was detected at the hospital nor at his early doctor appointments. At his appointment on January 12th, our pediatrician thought he heard something and referred us to a pediatric cardiologist. Honestly, I didn't think much about it because I felt like if something were wrong someone would have heard it before now.


I learned today that many of these more minor defects are not found early on because of the levels (can't remember what levels- basically how loud everything is) in the lungs and heart. Because the levels are very equal for the first few months of life, it's hard to hear something unless it's pretty significant. In "typical" babies, those levels become normal around 2-3 months of age. In Downs babies, it isn't until 4-5 months until everything levels out and more minor defects are able to be heard thus being the reason our pediatrician just heard it.


So, what I thought would be an easy "oh, he's perfect....it's wonderful to meet you, but we never want to see you again!" appointment turned into "your baby needs heart surgery" appointment. It was a blow and one of the first times that I was angry at that darn 21st chromosome. I LOVE our boy. Every single part of him...every chromosome and have no doubt that he is created EXACTLY HOW GOD INTENDED. I love to see him finally "get it" after working so extremely hard to roll over. I love his curved tiny pinkies that are a dead giveaway of that number 21. I love the look on his face after waking up....those huge almond shaped eyes and his smile melts me. And I LOVE that he has Down syndrome, but I don't love what he is facing.


He will be okay. He belongs to God. We have been given the tremendous honor to be his earthly parents, but he is God's son.


Please, join us in praying for our angel. Surgery will probably take place sometime in March or April (the doctor left it up to us).


This song has been on my heart alot lately. I feel like it captures our past couple of years and exactly where we are in our faith journey.. It speaks what I feel most days between Down syndrome awareness, orphans ministry and Haiti. Listen and read the lyrics. Notice what I've italicized. It's our story..... and his heart will be brand new. Amen.






What Faith Can Do- Kutless
Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you are stronger, stronger than you know

Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright

Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don't have a chance (That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!

Even if you fall sometimes
You will have the strength to rise

In Him,
E

**A quick story- I was tucking our youngest daughter in tonight and notice she had used one of her new bandaids on a cut on her finger. We gave her these bandaids for Christmas and each have a Bible verse on them. As she held her finger up for me to see, I noticed the verse-

Jeremiah 30:17
But I will restore you to health

and heal your wounds,

declares the LORD

Wow. Thank you God for the reminder. Amen.