Our little girl Esther's CDH story: Esther at 18 days

Monday, April 30, 2012

Esther at 18 days

Restful night for Esther, mama and papa. She pooped! Sounds strange, but this is a very good sign that all the organs previously located in her chest are now beginning to work. There is a "pocket" of air in her abdomen that is of some concern and will be monitored. Other than that, plans are to change to an oscillator vent today. This is a breathing machine that actually shakes Esther and is meant to encourage her lungs to open more. There has been no change in her "lung volumes" today, but the doctors did mention seeing her left lung opening more.
Thank you Heavenly Father for another day with your precious child Esther. Lord we pray your continued grace and healing in her. We ask that your timing might include Esther's lungs functioning well enough to come off ECMO before they need to change circuits and set her back again. We, as well as Esther are in your hands Father, and we will trust in you completely.

5 comments:

Rachel RoosmaApril 30, 2012 at 12:45 PM
AMEN!!!!! I'm in agreement with your prayers!
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The KimmelsApril 30, 2012 at 2:19 PM
Ah the shaker ventilator, kind of hard to see them on as they are constantly shaking, but can be good for their lungs!! p.s. I love the picture of her with her squished cheeks, we have lots of pictures of our little man like that, too. Esther is such a fighter, God is good! I heard this song today and thought of you guys "Blessings" by Laura Story. Praying for you always!
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AnonymousApril 30, 2012 at 4:12 PM
Go Esther!!!
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KatyApril 30, 2012 at 4:15 PM
Oh my goodness, I am so happy I have tears in my eyes! What a great day! Pooping is such a great accomplishment! Jacob's bowels got unknowingly kinked while his repair was being done so his pooping was an extra happy sign that he didn't have any dead bowel. It is so difficult to see your baby on the oscillator, but what amazing news that she will be getting off ECMO! Jakey didn't have ECMO so this was the most difficult thing for us to see him go through. In fact, the paralytic caused him to be so swollen, he was at times unrecognizable to us. We didn't take any pictures at his worst. We just had to keep in mind it was for the best to give his little lungs a rest and time to heal and grow. Don't get disheartened or discouraged if it feels at some point like you are taking another one of those steps backward. It's really just one more step on the road to recovery. :) I will be praying that all goes smoothly, specifically for her air pocket and that she doesn't fight the oscillator so they don't have to give her so the paralytic meds.

Lots of prayers from the Rondeau Family!

Katy
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AnonymousApril 30, 2012 at 7:50 PM
Still praying with the three of you - Esther is here for such a time as this. God bless you guys.
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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

Monday, April 30, 2012

Esther at 18 days

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