Our little girl Esther's CDH story: late update

Monday, April 30, 2012

late update

The doctors have been watching Esther's tummy today wondering why it is swelling. The latest is that they believe it is bleeding between the patch holding Esther's stomach contents in and the skin. The current plan is to open her incision and clean out the space tomorrow morning. With this, the doctor told us there is a possibility that the bleeding will not stop related to all the blood thinning agents used with ECMO. If that is the case they will have to take her off ECMO. That would be great if she shows that she is ready. If not, we would have no choice and that is when things get really scary.
Rhonda and I have definitely been struggling with fear and anxiety today. Change is difficult to process. I had to fight to focus on Esther today and not on the monitors. I wish I could always say that I have given it to the Lord. It is just so hard to completely let go and allow Him to reign and rule. As I have said before, nothing I can physically do. I am praying. God is listening. I do trust Him. He is good.

9 comments:

jkwalton427April 30, 2012 at 10:11 PM
Jason, Rhonda, and Esther,

Although strangers, we pray for you nightly! We were "introduced" to CDH by Ashley Sandifer (our BFs cousin), who lost her son, Maxton. Ever since we followed her story, I have tracked and prayed for others battling CDH both as newborns and those who are still struggling years after birth. We feel that God brought CDH to us and that we now have a responsibility to spread the word, to find answers. Please know that a family in Southern California is thinking of you all and praying along side of you! Your desire to follow God's path and rejoice in your days with Esther is truly inspirational! My family is from Bellingham, so we are very familiar with where you all find God each day. We pray that his creation gives you joy each day in your daughter and the world he created around you!
Prayers and blessings!!
ReplyDelete
Replies
KatyApril 30, 2012 at 11:05 PM
I know how quickly things can change and it is scary and discouraging but, let's keep in mind that Esther was doing well enough for the docs to consider taking her off ECMO today anyway, right? I feel like that has to mean something. My family is lifting you three up in prayer. Prayers also will be said for the doctors to be granted the wisdom to figure out this new problem too. Esther is in the best of hands with many minds working together, rooting for her to get well.

God is so powerful! Powerful over all! Lord, heal this sweet baby girl. Amen.
ReplyDelete
Replies
kecaetanoMay 1, 2012 at 1:10 AM
Prayers are being said and heard 1/2 way around the world (south Korea). May the good Lord heal and protect the 3 of you.
ReplyDelete
Replies
DebraMay 1, 2012 at 1:45 AM
Dear Jason, I don't know you guys, but I have been following your blog about your beautiful and sweet baby girl Esther. You and Rhonda are AMAZING and so INSPIRING. I can tell you both are a strong team. May GOD'S Peace flood your hearts tonight and give you the strength to let go. I'm Praying for the doctors and her care team to know what needs to be done for her. I'm Praying for all three of you.
ReplyDelete
Replies
UnknownMay 1, 2012 at 7:26 AM
Praying for Esther today as they work on her belly and that there won't be any bleeding complications.
ReplyDelete
Replies
AnonymousMay 1, 2012 at 7:52 AM
Sending prayers for Esther. Opened up Our Daily Bread and I turned to this scripture - 2 Corinthians 1:9, "We should not trust in ourselves but God who raises the dead." No matter how tough our journey gets, we are not traveling it alone.
ReplyDelete
Replies
AnonymousMay 1, 2012 at 8:23 AM
Prayers for Esther and mommy and daddy from a new mommy in Arizona.
ReplyDelete
Replies
AnonymousMay 1, 2012 at 9:14 AM
The Grahams (friends of the Whipples) are sending thoughts and prayers from Colorado...

John 14:27

“I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid."

Your faith is refreshing, and yes, God is good! Prayers for Esther, her doctors, and her amazing Mommy and Daddy!
ReplyDelete
Replies

Add comment

Subscribe to: Post Comments (Atom)

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

late update

9 comments:

Total Pageviews