Our little girl Esther's CDH story: Jason and Rhonda's video

Friday, March 30, 2012

Jason and Rhonda's video - Pray for Esther

36 weeks

37 weeks

We went to the doctors in Seattle on Wednesday and everything continues to look great for delivering on time. I have no contractions yet and she is still moving around when she needs to. I am starting to getting uncomfortable more and more with sleeping- but every pregnant lady goes through that. April 5th is my last day of work (5 more graveyard shifts left). We will be packing our bags April 11th to be in Seattle for however long the Lord has us there. God continues to show himself everywhere we go.

Jason and I brought my parents (Karen and Doug) to the doctors with us so they could get familiar with the drive to Seattle and the area we will be in. We got a tour of the labor and delivery room and where Esther will go to be stabilized for the few short hours she will be at UW medical center. Pray the delivery goes quickly as this is my first and I will be induced (usually causing more pain and a longer labor).

Thank you for your gifts, support, love and prayers. WE FEEL IT!!!

6 comments:

The KimmelsMarch 30, 2012 at 12:53 PM
You guys are amazing. You and little baby Esther are in my prayers. I know this must be a scary time, but so thankful you have your faith to get you through!
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BeckyMarch 31, 2012 at 5:51 AM
It's almost here! I pray that everything would go as well as possible. I'm glad that you have a plan and lots of support! God bless you.
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Tracy MeatsMarch 31, 2012 at 7:57 AM
I was in tears watching your youtube video and the faith you have in each other and in God is beautiful! Esther is blessed to have such wonderful parents. Praying for strength for you and your beautiful growing family, may Esther come out fighting!! Take each day as it comes and celebrate the good news and with each day take the bad and turn it into something hopeful. Always have hope for your baby girl. Miracles happen everyday and I am praying for Esther's miracle.

(((HUGS))),
Tracy, Ian's mom from CHERUBS
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MollieMarch 31, 2012 at 11:53 AM
Thank you for sharing your story, Jason and Rhonda. Breaks my heart to see another family having to deal with this difficult diagnosis. We are coming up on 10 years with my little miracle, Stella. I was diagnosed before the halfway point of my pregnancy and was even advised that perhaps I would want to terminate - SO thankful (everyday)that I did not! I experienced every possible complication in delivery and she developed additional complications after birth, including two unsuccessful attempts to get her off ECMO. Third time was a charm though and I thank our team of surgeons, doctors and nurses from Portland's Emanuel Children's Hospital everyday. I am praying for you and your family and hoping for the same wonderful outcome of survival with baby Esther. Please feel free to contact me, if you like.
Best to you all!
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UnknownApril 2, 2012 at 1:08 PM
Loved your sweet video with you and your husband--thank you for sharing that :) You guys have been on my mind and in my prayers a lot lately since Esther will be here so soon! I know you're so excited to meet her. Praying for an easy delivery for you and lots of healthy lung tissue for her! :)
Leslie (Baby Bee's momma)
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AnonymousApril 12, 2012 at 9:28 PM
Dearest Jason and Rhonda........... learned about Esther today..... Praying!! Thanks for sharing your story.... We believe in MIRACLES!!!

patty (grandma to a miracle grandson)
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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

Friday, March 30, 2012

Jason and Rhonda's video - Pray for Esther

6 comments:

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