Our little girl Esther's CDH story: A song the Lord has put on our hearts

Thursday, December 15, 2011

A song the Lord has put on our hearts

This song was playing in my car the day after Jason and I heard the tough news. My friend Cynthia was going to meet me at the doctors office so I did not have to go alone. I jumped in my car to drive to the doctors and this was the first thing I heard. I was overwhelmed by the truth of this song. Here are the lyrics for you to read and to listen to: Love Came Down by Brian Johnson

If my heart is overwhelmed and I cannot hear Your voice
I’ll hold on to what is true though I cannot see
If the storms of life they come and the road ahead gets steep
I will lift these hands in faith
I will believe

I remind myself of all that You’ve done
And the life I have because Your Son

Love came down and rescued me
Love came down and set me free
I am Yours I am forever Yours
Mountain high or valley low
I sing out remind my soul
That I am Yours I am forever Yours

When my heart is filled with hope
and every promise comes my way
When I feel Your hands of grace rest upon me

Staying desperate for You God
Staying humbled at Your feet
I will lift these hands and praise
I will believe

I remind myself of all that You’ve done
And the life I have because Your Son

Love came down and rescued me
Love came down and set me free
I am Yours I am forever Yours
Mountain high or valley low
I sing out remind my soul
That I am Yours I am forever Yours

I am Yours
I am Yours
All my days
I am Yours

I am Yours, I'm Yours forever
I am Yours, I'm Yours forever
I am Yours, I'm Yours forever Lord

Love came down and rescued me
Love came down and set me free
I am Yours I am forever Yours
Mountain high or valley low
I sing out remind my soul
That I am Yours I am forever Yours

This song brought me to tears in realizing how close our Lord is in times of trouble. There has never been a time in my life when God has not been faithful and proved how powerful and real he is. Through the deepest and darkest times of my life, he has shown his redeeming power in all of it. For this I can say today and every day- no matter how difficult this time is with our daughter and the unknown that is before us- I am his and forever is. I have received ETERNITY with him and there is nothing better. Thank you father for saving me and giving me the gift of life and the understanding that even though I want to say why me, why us- I can scream and cry and shout and lift my hands because we are forever his.

3 comments:

UnknownDecember 15, 2011 at 8:53 PM
Amazing post. Did I see that you named her Esther? :) We prayed for her (and you) several times today. Loving you.
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UnknownDecember 15, 2011 at 8:53 PM
That was me. Aimee
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AnonymousDecember 29, 2011 at 8:42 AM
Wow what a wonderful song. God continues to use you Rhonda in remarkable ways. I'm proud that you're my friend. Beks
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What is Congenital Diaphragmatic Hernia (CDH)?

A congenital diaphragmatic hernia (commonly known as CDH) is an opening in the diaphragm (The dome-shaped muscle that separates the chest cavity from the abdomen.) It occurs at approximately 9 weeks gestation, when the diaphragm, for an unknown reason, fails to close completely. The hole allows the abdominal organs to push into the chest cavity. CDH is a life-threatening birth defect because it limits the growth of the lungs.

CDH occurs in every 1-2500 live births in the United States. Approximately 1,800 babies are born each year with CDH. Approximately 50% of all babies born with CDH die. Luckily in Seattle where were told we have a 80-85% chance they will survive. CDH happens just as often as Spina Bifida and Cystic Fibrosis yet many have never heard of CDH. To explain it a little further:

The diaphragm is a muscle that separates the abdominal cavity from the chest. It’s a divider. At 8-12 weeks gestation, depending on what you read, this muscle develops and comes together, as it should. But sometimes it doesn’t. Nobody knows why, it is random. There isn’t enough evidence to suggest that it is genetically destined to happen, and it isn’t because of anything the mother or father did or didn’t do. The diaphragm simply forgets to close. In 90% of diaphragmatic hernia cases, this happens on the left side. It’s also more common in girls.

This happens at the same time that everything inside of the fetus is forming and finding their places, and if there’s a hole, sometimes organs will find their way through it. Sometimes the organ involvement is minimal, sometimes not. In any case, if there is anything that is supposed to be in the abdominal cavity but is incorrectly located in the chest cavity, it takes up valuable space that the lungs need in order to fully develop.

When a baby with known CDH is born, she has to be intubated and placed on a ventilator immediately. Crying can make the hernia worse. If all techniques of getting her adequate oxygen that way are exhausted, she’ll be placed on ECMO, which is a whole different monster. Once a baby with CDH is placed on ECMO, his chance of survival drops to 50%. ECMO comes with its own set of complications (and ECMO is a complication in and of itself), so we’ll focus on that if things get to that point.

The thing about hernias is that they don’t repair themselves. They either get fixed or get worse. Surgery is necessary to repair the hernia: Making an incision below his ribs, moving his organs into place, and connecting the tissue of the hernia (or repairing with a patch if there is not enough tissue to connect). The surgery itself is pretty straightforward, but the issue lies in his ability to maintain adequate oxygen levels.

Even if you move the organs back into place, even if the hernia is repaired perfectly…the lungs still missed out on valuable development while in the womb. The months following surgery are dedicated to recovery from surgery as well as ensuring proper oxygen levels. The average NICU stay after birth is 2-3 months. Babies with CDH may come home with forms of oxygen assistance if everything else is stable enough.

Our little girl Esther's CDH story

Rhonda and Jason

Thursday, December 15, 2011

A song the Lord has put on our hearts

3 comments:

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