Our little girl Esther's CDH story: almost there!

Wednesday, April 25, 2012

almost there!

Latest report is that surgery has gone as planned and quote "very well". They are closing her up now, and the next page will be for us to go meet with the surgeon and get his report. They tell me it could take up to an hour to close, so if we are long in getting the next report that is why. Praise God from whom all blessings flow! No need to stop praying though, you all have been awesome and are glorifying God

12 comments:

AnonymousApril 25, 2012 at 12:32 PM
Such great news! I will continue to pray for the final part of surgery and of course her recovery.
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teresaApril 25, 2012 at 1:08 PM
Dear Rhonda and Jason, my name is Teresa and I will pray for Esther as well and for the two of you. may God's mercy and grace flood you even now. Thank You Papa God, Lord Jesus Our KIng and Blessed Holy Spirit for Your Creative Miricles, and Your Healing Anointings. Thank You for Your Presense with them all....In Jesus Mighty Name....Amen
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AnonymousApril 25, 2012 at 1:48 PM
Thank God! I have been anxiously awaiting news today. I will continue praying for you all and hope for the easiest recovery for your little angel!
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Ali WorkentinApril 25, 2012 at 1:52 PM
Thanks for the update. And wonderful news that so far things are turning out well. Continuing to pray for all involved today and especially for Esther to grow and heal quickly!!
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CutziApril 25, 2012 at 1:58 PM
Thank you, Lord! So happy to hear this report. My three big kids and I prayed for all of you this morning right at 8:30 during our family Bible time. It was pretty much the only part of family Bible time that went as I'd hoped. :-)
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UnknownApril 25, 2012 at 2:05 PM
So glad to hear this! I've been thinking about and praying for you guys all day!
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AnonymousApril 25, 2012 at 2:37 PM
Good to hear that! Hope the next news are good, too! Sending all of you strength!Maren
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AnonymousApril 25, 2012 at 3:53 PM
Rhonda and Jason, I have never met you. My name is Nicole and I heard about your story from Jenny Bajema's Facebook link to your blog. I have been praying all day for your little baby, Esther. I am so touched by the story God has written on your lives. I'm praying prayers of thanksgiving for Esther's life and I'm pleading in Jesus' name for a beyond positive report from her surgeon and continued healing. Thank you for being willing to share your experience. God is most definitely being glorified. And I believe it is safe to guess that you have more prayer warriors interceding for sweet Esther than you could possibly imagine.
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AnonymousApril 25, 2012 at 4:14 PM
God is so Good! May he continue to bless and keep the three of you -
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UnknownApril 25, 2012 at 4:59 PM
This is such great news! My prayers for Esther will continue until she is well enough to go home with you. <3
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AnonymousApril 25, 2012 at 5:32 PM
Beloved Papa, Jesus and Holy Spirit, The song You inspired testifies to all Your Promises - You are the Healer- Your Healing Hands are Holding Precious Esther - Great is Your Faithfulness! Mom and Pappa can't wait to see pictures of Beautiful Esther joining you in the swings. Thank you for letting me share your journey and join in prayers- Amazing Grace :) Amazing Love :) Upper Room sister in Christ :)
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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.

Rhonda and Jason

Wednesday, April 25, 2012

almost there!

12 comments:

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