Our little girl Esther's CDH story: She is two days old!

Saturday, April 14, 2012

She is two days old!

We got a little sleep last night. Esther has only improved since her last trial yesterday morning. We have been able to shower and digest the last 24hours a bit. The ECMO machine has several clots in it and they need to change the "circuit" (start new with new tubing) and that will not be without its challenges, but at rounds with the doctors the plans are all about moving forward and "next steps". This is encouraging. We had breakfast, they changed the circuit and my baby girl looks better than ever. We continue to pray for wisdom, protection, healing and comfort. Only God knows what is next, and I trust in Him.

9 comments:

AnonymousApril 14, 2012 at 5:46 PM
Wonderful News of Esther's progress and your great attitude. Prayers continuing for your beautiful baby and you two.
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TestApril 14, 2012 at 6:13 PM
Your trust in God will help you through. I'm praying for Esther and for you!
Lisa, Mom to Ramsey, LCDH Survivor
rootingforramsey.blogspot.com
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KathyApril 14, 2012 at 9:09 PM
What a testimony to God's grace this blog is. Only the grace of God could sustain you both so well in such difficult circumstances. You are very clearly conveying the trial as overwhelming, but bearable through dependence on Jesus Christ. All things are possible through Jesus. There is NOTHING to hard for Him!
Our church is praying.
Kathy Robson (friend of Rhonda's mom, Karen)
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Peter and Ann LenApril 15, 2012 at 8:25 AM
Remember that God is the "voice of truth". Do not be afraid. He has Esther in His hands!

Praying constantly for your family.

Peter & Ann
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Isaac and April ErhardtApril 15, 2012 at 10:48 AM
Thanks for keeping us posted on Esthers progress. We praise God for your miracle baby and are continuing to pray. Love you!
Erhardts
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UnknownApril 15, 2012 at 10:59 AM
So encouraging to here Rhonda. Jesus does hold it all together. I can't imagine how scary the last few days have been for you guys. I had knots in my stomach and I'm not even there. You guys are really tough-God has given you much endurance. Keep pressing on. Much love to you all.
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UnknownApril 15, 2012 at 11:34 AM
Rhonda, I am praying for you, Jason, and Esther. May you rest in God's abounding strength and peace...and may God be glorified through this testimony.

"My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, you people; pour out your hearts to him, for God is our refuge." Psalm 62:7-8

Love
Natalya Len
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AnonymousApril 15, 2012 at 1:41 PM
I found you from the Knolls. I'm praying hard for you, Rhonda, Jason and Esther. Praying for a miracle in her little body.
Your last post, about the importance and sufficiency of Jesus Christ in your life, is the true miracle in all of our lives. Thank you for your injunction.
Bethany L.
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AnonymousApril 15, 2012 at 2:02 PM
I am continuing to pray for you and your little Esther. We don't know eachother, but I saw this on facebook and it touched my heart. I will continue praying and asking others to pray for your precious little blessing.
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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 14, 2012

She is two days old!

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