Our little girl Esther's CDH story: STABLE

Tuesday, April 17, 2012

STABLE

sta·ble

² [stey-buhl] Show IPA

adjective, sta·bler, sta·blest.

not likely to fall or give way, as a structure, support,foundation, etc.; firm; steady.

able or likely to continue or last; firmly established;enduring or permanent: a stable government.

resistant to sudden change or deterioration: A stableeconomy is the aim of every government.

steadfast; not wavering or changeable, as in character orpurpose; dependable.

not subject to emotional instability or illness; sane;mentally sound.

STABLE. A word I am very fond of lately. It is almost like a song when spoken by doctors and nurses.

This morning; stable was the word from our "team" of medical staff. Esther has been quite restless periodically. During those times her movement does interfere with the ECMO, and they have had to increase sedating medications. While it is amazing to see her beautiful eyes shining up at me, I can handle her peaceful face as she holds my finger and suckles the breathing tube.

She was about a liter up on fluid yesterday. One of the doctors commented that would be like one of us having an additional 20liters (10 2L bottles) of fluid in us. They have been medicating her with Lasix to pull off the additional fluid and allow her body and the ECMO to operate more efficiently.

This is great! For these past 3 1/2 days she has looked like a badly beaten UFC fighter. Eyes swollen shut, fluid pooling around her head, stay puff marshmallow arms and legs and a tight shiny chest. This morning her face is defined like at birth, no pain, no discomfort, just peaceful. I know I'm her Papa and prejudice, but she is the absolute definition of beauty and grace.

Great report yesterday afternoon as well. The head/brain ultrasound is stable and unchanged.

More of the same today; rest, recovery, healing and growth. Pray, Pray, Pray, Pray!

Prayer is comfort, reassurance, and affirmation. God is not just near but in, about and surrounding us. Thank you all for your continued prayerful support and encouragement. God is Great!

9 comments:

UnknownApril 17, 2012 at 11:38 AM
Such wonderful news! You're correct, Papa - she is the definition of beauty and grace. My prayers for all of you will continue!
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CandieApril 17, 2012 at 1:11 PM
Your words along your journey have been eloquent and profound! Filled with Hope and Faith...We will be Praying for you all! ;)
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LizApril 17, 2012 at 1:22 PM
Praise for holding stable!! Continued prayers for your family.

Love,
Liz
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AnonymousApril 17, 2012 at 1:28 PM
This is such great news thus far. I am continuing to pray for you all.
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Mrs. GuerreroApril 17, 2012 at 6:33 PM
I've been praying furvently for you all- and this little girl has weighed on my heart! May God continue to blanket you and your little family in Grace, healing, resilience and hope! And, she is beautiful! :)
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The PetersonsApril 17, 2012 at 7:16 PM
Baby Esther is in our "special needs" prayers every night, as is your entire family. Praise God for working miracles through her! We will keep praying her (and all of you) through!
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Bethany L.April 18, 2012 at 12:59 AM
I'm praying for baby Esther, and all those who love her. She is beautiful!
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AnonymousApril 18, 2012 at 5:40 AM
Such wonderful news. Brings joy to my heart and tears to my eyes. Praise God!

Brenda Thomas
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Debbie NeunsingerApril 20, 2012 at 1:23 AM
We all "Praise Our Lord" for the Wonderful Day April 12, 2012" Esther Frances Holtrop" was born. She is a "Blessing" to all of Us!!Esther is born from a family of strength!!Our Lord will see her through these difficult moments!!
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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

Tuesday, April 17, 2012

STABLE

sta·ble

9 comments:

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