Our little girl Esther's CDH story: 2 steps forward, 1 step back

Sunday, April 29, 2012

2 steps forward, 1 step back

Esther has been pretty active for the past 18 hours or so. Fighting to see a little of the world around her. Wandering eyes, dancing hands. She had an excellent chunk of sleep yesterday, her chest rising and falling. Then she woke up and was having nothing of the medications to sedate her.
So, overnight she didn't settle much. This morning her lungs are a little more collapsed again. The ECMO circuit has already gotten pretty clogged with fibrin and clots. The doctors want to keep after getting her lungs open more and moving towards stopping ECMO. For that, Esther needs to show more sustained improvement in her lungs. On a good note, her swelling has come down tremendously and her abdomen is a little less tight. However, she did have a little blood in her stomach tube last night.
So, a little good (we have another day to be with our beautiful daughter) and some not so good. It is what we have been told to expect and have not had to deal with for a few days.
We continue to trust in the Lord that His plans for us are good. We lift up all you prayer warriors out there to receive sustaining strength and peace from the Holy Spirit to continue the battle for God's glory. To Him be all the glory forever, amen.

forget the morphine, let's play!

7 comments:

KatyApril 29, 2012 at 11:37 AM
She is just precious! Your life is a roller coaster right now. It feels like 2 steps forward, 1 step (or sometimes 2,3,4 steps) back. It's a long and draining journey but don't be disheartened. Esther has Jesus in her corner and she is a warrior. I'm so happy you are getting a chance to interact with her a little bit.

Katy
Jacob's Mommy
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The LeviensApril 29, 2012 at 1:16 PM
she is precious! praying for you all.
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ChrissyApril 29, 2012 at 2:42 PM
She's just showing her fighting spirit... which is what is going to pull her through! Come on, Esther! Cooperate now and focus on those lungs, sweet girl. Continuing to lift you all up in prayer. Peace be yours.
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AnonymousApril 29, 2012 at 6:29 PM
Praying without ceasing for your Beautiful Esther..."I am the Lord that heals you! - Exodus 15:26. My heart goes out to you for some sweet rest and Papa's sweet water. Upper Room Sister in Christ
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JaishApril 29, 2012 at 7:49 PM
What a beautiful fighter you both have! I have been folowing your journey and as a mother of a 14 month old son, my heart aces for you. Stay strong and give your sweet girl all the love you have to give so she will always know how much you love her. Jesus gives us one day at a time to cherrish, and i know you both are. Prayers for healing strength and patience... I know it's not easy. With love, Jaisha Hudson Richbaw
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AnonymousApril 30, 2012 at 9:05 AM
Oh my! I love to see her beautiful little eyes wide open with wonder. I cannot wait for the day when I log on to your blog to find her precious little face free of all of the tubes. I continue to pray for little Esther. I love her though I've never met her. I think about you all often, and continue to pray for a speedy recovery!
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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

Sunday, April 29, 2012

2 steps forward, 1 step back

7 comments:

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