Our little girl Esther's CDH story: 2015

Sunday, April 12, 2015

Happy Birthday Esther

Three years! Three years? Three years and what has changed? God is reigning in heaven and on earth! Three years ago normal was crying ourselves to sleep as we begged God to show us His will in Esther's life. Normal was waking in a small room 3 floors above where our precious first born daughter fought night and day just to "be". Days of "rounds" with the doctors and nursing team in the NICU of Seattle Children's Hospital, and the honor of being first because our sweet Esther was the most critical child there. Mornings of starbucks coffee provided by the many friends who wanted to give in some way to support us in our support of our baby girl. Coffee and deep prayer, worship, and study of God.
Life was much simpler then. God was every breath. Every breath through our God given healthy lungs while we watched strong Esther with machines producing her breaths; dancing hands, bright loving eyes, sweet peaceful suckling on her intubation tube. No concerns about who would win american idol, when we would be able to afford a new iPad, if we would be vacationing in Hawaii or Mexico. Just trust that God would provide all our needs. And He did, as He always does and is doing right now.
Sadly I don't really remember her birthday last year. It's like that with grieving and the ones we love in this life. It's like that with our love of God. Sometimes we burn with a blazing fire and excitement that is uncontainable. Other times we are just going thru the motions.
This year is hard. Josephine will be two next week and I see some of what might have been. I'm not bitter. I am completely at peace with our little girl living in God's glory, walking the streets of gold without a care or want or fear. It is a deep aching; maybe like arthritis of the soul, and the weather was just right today making moving a little more painful.
I have had countless opportunities to share God's story of her life these last three years. Almost never having the slightest twinge of pain or sadness. There are no guarantees in these bodies, but God is on the throne.
In giving Esther back to Jesus, we have only the most minute understanding of what God the father felt when His Son gave His life on a cross and bore the guilt and weight of all our ugly sin. We don't deserve His love. We can't earn His love. Yet He loves us!
I miss my daughter Esther. I long to be with her and my Savior. I'm glad He is making me new every day and that those meetings are assured to take place when He has planned them to. I am so thankful God gives us "stretching" times like we've had to show us how much He truly loves us and how utterly close He always is.
Happy birthday Esther,
Papa loves you

Each year since Esther has passed the Lord has brought a new song in each season. Take the time to listen and reflect on all the Lord has done and given to each of us.

Also an update on us through pictures. We had a little boy and named him Nehemiah James Holtrop. Another name picked for God's redeeming love. He is almost 8 months old!!!

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 12, 2015

Happy Birthday Esther

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