Our little girl Esther's CDH story: He is in control

Sunday, April 22, 2012

He is in control

Rhonda posted a quick update to facebook earlier about the brain ultrasound coming back with slight increase. That said, the doctors from each team had roughly the same response. That in terms of her overall bleed, it has grown a fair amount, but in terms of the day to day the growth today is very minimal and could almost be classified as "no change" or stable.
As this continues doctors, nurses, ECMO tech's and ourselves are nervous for the "big one". As one of the doctors stated earlier this week "we could go 10-12 days without any significant bleed and then day13-18 have a large bleed and all our patience and waiting is for nothing".
So when Rhonda told me today we needed to meet with the doctors to discuss "what next", fear slipped in just a little. In all honesty though, God has covered me with His peace today. We weren't supposed to have today. We weren't even supposed to have this last week! Today Esther is the adorable, absorbing all my love daughter God has trusted Rhonda and I with.
Like I said last night, we never know when our time is. Let alone our children's. I am so thankful God has given me today, right now. I cherish it. In a way, we have it better. I mean, if you new you were going to die, what would you change, do, plan, hope for?
I just wanted to boast about God's presence in our struggle. Verses get thrown around with immense meaning and power that you can almost hear too often to be impacted, but He truly never leaves or forsakes you .
I pray that anyone who reads this, shares it, or discusses it will take a moment to "Be still and know that I am God". In other words, simply stop and wait upon the Lord. Seek His presence.

The response from everyone really has uplifted Rhonda and I, as our purpose for the blog and sharing our Esther and our trial was to hopefully Glorify God and magnify His name. You all (y'all for our southeastern brethren) have done that yourselves. Keep the prayers coming. There is no "right" way to pray. God wants a personal relationship with us, so talk with him as you would your best friend. He will listen in the same way.

All the medications that are being delivered to Esther to keep her alive

Pappa loves singing songs and praying with his little girl.

Some of the machines that are keep Esther alive

8 comments:

UnknownApril 22, 2012 at 7:11 PM
Praying for sweet baby Esther and that her brain bleed will resolve completely. Praying for continued peace for you and Rhonda.
Leslie
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The KimmelsApril 22, 2012 at 7:40 PM
Still praying for you guys and praying for wisdom for Esther's team. I love that you are learning to enjoy each day. That's the best thing you can do is just take it one day at a time and trust God.
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Debby SApril 22, 2012 at 7:43 PM
Prayers are being said for you all. Take care.
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AnonymousApril 22, 2012 at 8:50 PM
Continuing to pray that God will heal precious Esther. I pray that the bleed will resolve. God is using Esther as a testimony. Your family is in my thoughts and prayers. God is good!!

Sharon Connell
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AnonymousApril 23, 2012 at 11:39 AM
Prayers and love for Gods guidance for all of you. Thank you Lord Jesus for your daughter Esther.
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UnknownApril 23, 2012 at 12:20 PM
It is truly amazing how strong these little warriors are. Hunter continues to teach me lessons each day. A couple of the more important ones are to value and respect life and living life. His birth and strength to live life have truly humbled me. Esther is a strong warrior and she is teaching you both lessons already. My love, prayers and positive energy is being sent your way.
Christina Stembler
Mom to Hunter LCDH Survivor
Wa. State CHERUBS Rep
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AnonymousApril 23, 2012 at 3:35 PM
You all have been in my prayers since Rachel & Jeremy C. posted your story on FB. I have shared this with a devotional group "family" (at the Upper Room site) and you are in their prayers as well. You have received such a gift in Esther and she the gift of her family. In turn you all have given all of us a gift as well. Love and prayers for you all.
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AnonymousApril 23, 2012 at 5:02 PM
Beloved Papa, Jesus and Holy Spirit...You are Forever Faithful - You will keep all of your Promises to Precious Esther and her family. She is bring Glory to Your Holy Name!!! Her parents testimonies of Love for You,Papa, and Precious Esther Unite us in Love as we Pray- Faith, Hope and Love. The Greatest of these is Love. Covered by His Amazing Grace - Amazing Love! -Your UpperRoom sister in Christ
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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 22, 2012

He is in control

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