Our little girl Esther's CDH story: Breath sounds

Saturday, April 28, 2012

Breath sounds

Not too much to say today. Another good and restful night for Esther! She has regained all lung function she had prior to surgery and our nurse said she heard breath sounds bilaterally(air moving in both lungs!). Talk at the morning huddle was very relaxed and is centered toward opening her lungs more and getting off ECMO. Again, no change on her cranial ultrasound, so no more bleeding to her brain! Amazing! These last two circuit changes have been without new bleeding and the doctors now talk as if it is a stable thing. Stable; I really do love that word.
I think I will go worship the Lord in a run today. Our hope is in the Lord. He is our rock and salvation. Glory, honor and praise to God for grace and hope in the midst of life.

4 comments:

ChrissyApril 28, 2012 at 11:33 AM
Oh, I remember how exciting those first few squeaky breath sounds were!! Good work, Esther. Keep fighting and growing sweet girl. Thanks be to God.
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MackenzieApril 28, 2012 at 12:43 PM
I am beyond excited over this post. Praise be to God. SOOOOOO wonderful.
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kecaetanoApril 28, 2012 at 2:38 PM
Enjoy your run, you deserve it. Take in the beauty the Lord has given us! Way to go Ester!
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SaraleeApril 28, 2012 at 6:14 PM
Just a Lynden person following the story of your precious little Esther! I love your faith . . . we serve a mighty God and Savior. Nothing is to "BIG" for him! You are in our daily prayers and thoughts!

Before God formed Esther in the womb He knew her, and before Esther was born He set her apart! Jeremiah 1:5

I love those 3 words . . . set her apart! She is truly set apart to be His little messenger of faith and praise to every milestone she makes. I believe the Father has some mighty plans for this little angel.

Find rest, O my soul,
in God alone;
my hope comes from Him.
He alone is my rock and my salvation;
He is my fortress, I will not be shaken.
My salvation and my honor depend on God;
He is my mighty rock, my refuge.
Trust in Him at all times,
O people; pour out your hearts to Him,
for God is our refuge.
Psalm 62

Keep the faith!

Saralee
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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

Saturday, April 28, 2012

Breath sounds

4 comments:

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