Our little girl Esther's CDH story: Not planning, Just trusting

Monday, April 16, 2012

Not planning, Just trusting

Things still going as planned with Esther stabile as expected. Of course, that is, as expected by the medical staff.
Rhonda is finding a beautiful peace in this time. It is admirable to say the least. I am so proud of her strength and the support she gives me. I, on the other hand, have had many anxious moments of doubt and contemplation of the future. Then the Lord reminds me

Matthew 6:27

New International Version (NIV)

²⁷ Can any one of you by worrying add a single hour to your life^[a]?

It is truly not up to me. I can only ask of God and trust in his plan whatever it may be.

Jer 29:11 (NIV) "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

Right now, in this moment, God has granted Rhonda and I a beautiful, strong, vibrant child to pour out our love and affection on. Right now, I can rejoice in the goodness and grace of God.

9 comments:

The KimmelsApril 16, 2012 at 12:43 PM
Still praying!! So thankful for the peace that God has given Rhonda. I remember when I was in the NICU with my little guy, there were days that I had to take one minute at a time. You have a little fighter, indeed
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KatyApril 16, 2012 at 1:01 PM
Praying for Little Esther! It's obvious God has already been working miracles for her. Take care of yourselves too so you can remain strong for your little girl. There is no comfort like that that comes from God. I remember the feeling that I was not standing on my own but that Christ was literally holding me up. May God continue to hold and comfort you as you travel this long journey.

God bless!
Katy
Jacob's Mommy
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AnonymousApril 16, 2012 at 1:04 PM
I am following your story and wishing the very best to your little fighter. i just got the diagnosis at 20 weeks that my little boy has CDH and I hope he can be quite the fighter too.
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UnknownApril 16, 2012 at 2:40 PM
Sending love, positive thoughts and prayer to Esther and you both. Please remember to rest as much as you can, eat and try your best not to concentrate on those monitors. If you need me, I am here.
Love,
Christina Stembler
Hunter's Mom
Wa State CHERUBS Rep.
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JenniferApril 16, 2012 at 3:44 PM
Rhonda and Jason - everytime I come to your blog - I look at the picture in your header and just enjoy the love that is shown between the two of you as you swing. May you still feel this love and peace as you rest in Jesus and feel his arms of strength and comfort around you. Thank you for keeping us updated so we know how to pray. May your love for each other and your love for our Lord give you what you need to carry through these coming days. And yes - as the post above says - remember to rest and eat and take care of yourselves as well, so you can take care of each other and take care of Esther, even when that just means looking over her and praying or being able to take one of her tiny hands in yours. Praying for you, and loving you all!

Jennifer DiTommaso
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Uncle NateApril 16, 2012 at 8:23 PM
We are praying for you three every day!
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Jennifer TenneyApril 17, 2012 at 4:50 AM
Thinking of you and praying for your Esther! I remember those scary ECMO days like yesterday even though my little girl is now 3 1/2 years old and perfect! Many, many prayers for a stabile and good day today!
Hugs,
Jennifer
Mom to Dakota 12-25-2008
RCDH/ECMO/premie survivor
jennifertrafton@Hotmail.com
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UnknownApril 17, 2012 at 9:39 AM
I am following Esther's progress and praying for her and the both of you. Your faith is an inspiration to all. God has blessed you and is going to continue to do so because of your faithful stewardship. Thank you for sharing Esther's story with us all and allowing us to be blessed by God's amazing work! Bless baby Esther, the both of you and your families!

Renee Ortenzio-Conforti
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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

Monday, April 16, 2012

Not planning, Just trusting

Matthew 6:27

9 comments:

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