CDH Awareness Day

“Isn’t it ironic, don’t you think?” 

“Like finding out your baby has CDH, on the actual national awareness day?”

“like rain on your wedding day…”

Ok – I can’t carry a tune and I may be tone deaf.. But I always think of that Alanis Morissette song when I think of how we were diagnosed on CDH Awareness Day on March 31, 2010.

It is not lost on me, any day how completely blessed, lucky, fortunate, (enter a bunch of adjectives) that she is with us six years later. How, in a few minutes she is going to come waddling down the stairs with her crazy bed head and come snuggle with me on the couch. My heart feels like it may burst every time I squeeze her because I know how close we came.

In honor of this day, I thought I’d share a blog post I wrote for the amazing ladies at For the Joy of It last week. For the Joy of It is a community of women actively chasing after the heart of Christ together. They have a heart for other women and a desire to encourage one another and build each other up. (This is my favorite part) Our community points others to Christ – not by what we say… but by how we live. 

Blog Post here: Sistering…It’s something we can all do 

The body is a unit, though it is made up of many parts; and though all its parts are many, they form one body” (1 Cor 12:12). 

This truth is a foundation for what The Joy of It does as a non-profit here in the Northwest. One of the things we get to do is come alongside and support the existing activity of Christ that’s happening in our communities.

The Joy of It gets to do this thing called “sistering” where we support living out what it is to be the body of Christ with many different functions.

What is “sistering?” As defined by architects and the construction industry, it happens in the building process. A structure is built with a series of beams called joists. A joist is basically a strong, heavy board that supports a floor or ceiling. Sometimes a load is too heavy for the joist and it begins to sag, crack or weaken under the pressure. “Sistering” is where extra boards are added to the right and/or left of the joist to strengthen it. (Continue reading here)…..

Join me in raising CDH Awareness today. Wear turquoise, or a Ladybug Run shirt, post about it on Facebook, register for the Ladybug Run and post why you are running this race with us, tweet about CDH and use the hashtag #cdhawareness or #cdhawarenessday, or do a random act of kindness and spread love, joy and HOPE today.

I’m also going to remember all the precious CDH babies that didn’t make it, and celebrate the ones that did.

It’s that time again….

Finley has an ultrasound scheduled for Friday to take that annual look at her bile duct. As always, I would appreciate prayers for everything to be “of no concern” and for her to have a technician that is able to do the procedure without causing her pain.

For those just coming up to speed on our miracle who are wondering why are we looking at her bile duct? Did she have a CDH? Finley had another abnormality occur shortly after she came home from her first NICU stay. Initially, they thought she had a cholodochal cyst and promptly scheduled surgery.  But, God had other plans. The issue resolved itself and she didn’t need surgery, but it resulted in her bile duct being slightly outside of normal range.. this is something that warrants monitoring because if there is inflammation in the area causing this aberration of size (which we can’t see with MRI or ultrasound) this is a spot that could develop cancer. The laundry list of things that “could” happen to Finley is so long, I have come to a place of great peace that I am not worried about it happening. God is with us every step through prayer and that gives me peace. So thank you for praying for our sweet girl and continuing to do so.