Our little girl Esther's CDH story: Pictures of Esther first 5 days of life

Wednesday, April 18, 2012

Pictures of Esther first 5 days of life

Esther fighting for her life. A doctor told Jason " come over here and talk to her. She will recognize your voice. " What a sweet moment between papa and Esther.

Day 1 almost complete. Dad taking Esther temperature for the first time.

Momma changing Esther diaper for the first time.

Day 1 almost complete. We spent the day praying and crying out to the Lord to save our little girl. Her heart had stopped earlier in the day and she had doctors confused as to what was going on with her. She also was hooked up to the ECMO machine earlier in the day.

Day 2 with Esther. She was sensitive to light and very swollen with fluid from the ECMO machine.

Esther wet through everything. It takes three nurses to move her to just change her bedding and diaper. She doesn't know what is going on here.

Now Esther is mad. She is in pain and wants to be put down.

Esther with her new bow the nurse made for her. Of course holding tight to Papa's hand.

Pondering the origins of the world

We love the moments we get to see her with her eyes opening!!!!

9 comments:

JenniferApril 18, 2012 at 3:47 PM
Thank you Rhonda and Jason for sharing these pictures with us. She is SO BEAUTIFUL!! I am certain you both are soaking in every moment you are spending with her!! We are continuing to lift you ALL up in prayer before our heavenly Father, who loves Esther so much more than any of us here on earth could even begin to love her. I pray that you continue to rest in His love, His care, and His strength!

jennifer ditommaso
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AnonymousApril 18, 2012 at 4:31 PM
Thank you for sharing. Her holding Jason's finger is so precious and reminds me of our time in the NICU as that was Liana and her daddy's thing. She is SO SO beautiful. I hope some day that we can make it back to the West Coast and our family can meet our little cousin. I know that she is being prayed for around the clock from this coast to that one. You are all very blessed to have such a fighter on your hands. I know you are but cherish those moments of getting to care for her in the NICU even if it something small as these moments will truly last in your memory forever. I know ther isn't much I can do from 3,000 miles away and that you have support all around you but if you need anything we are here. Family is family no matter how far apart. Love you guys and stay strong in Him.
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Karen WalkerApril 18, 2012 at 5:16 PM
Thank you for sharing those pictures. It is so good to see Mama and Papa in the pictures as well! So good to see that the two of you are alright as well. Praying for continued peace and strength for you and the guarding of Esther's spirit, healing of her body, and giving her peace amidst all this chaos at the beginning of her little life. Praise God for His presence with the two of you, and filling that room invisibly, yet so tangibly amidst all that technical equipment. Amazing God!!!!! So thankful that He is yours!!!!
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AbbyApril 18, 2012 at 5:22 PM
Love love these!! I adore her pink hairbow :-)
Stay strong, keep fighting sweet baby!! Many hugs and prayers from Atlanta!
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AnonymousApril 18, 2012 at 5:44 PM
Hi Rhonda I was telling my mom about baby Esther. We got to talking how I was 2 months early and only 2 lbs. She said girls are fighters!!!! I just wanted to remind you of that. She is so precious and beautiful. I love her pink bow:) Your in my thoughts and prayers. Hugs! Jenn B
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marianneApril 18, 2012 at 7:25 PM
Loved seeing all these pictures of sweet beautiful Esther. They bring tears to my eyes, tears of joy that she is here and is so beautiful and precious and that she is fighting and the Lord is sustaining her. And tears of heartache to see her little body hooked up to so many machines. We are constantly praying for her and for you guys as well. You are never out of our prayers.

Love the tenderness, pride and love that are on both of your faces as you look at your daughter.

Much love.

Esterly's
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AnonymousApril 18, 2012 at 8:26 PM
I'm so glad your little girl is doing well. It must be very hard to see her looking so uncomfortable - such a sweet little baby. Your story has touched many people. Like many others I worry and pray for her. Very best wishes to you both.
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AnonymousApril 18, 2012 at 9:12 PM
Thanks for sharing the pics of your beautiful little girl - we're continuing to pray for the three of you - the Lord bless you guys.
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AnonymousApril 18, 2012 at 10:19 PM
I can't imagine the strength that God is providing you and your family during this time..What a gift straight from God. May He receive all the glory and your little angel be restored to health.
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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.

Rhonda and Jason

Wednesday, April 18, 2012

Pictures of Esther first 5 days of life

9 comments:

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