Want to Start a "Hope for Lilyan" Blog. Update on CCAM and Recent Prayer Request

Updated on March 29, 2012
E.B. asks from Miami, FL
9 answers

Good morning Moms and Dads:

Yesterday we saw the Fetal Therapist for our daughter who on Friday March 23 was diagnosed with a CCAM. Our daughters life flashed before our eyes yesterday as we were given the worse news and the best news. I have found very little stories regarding this malformation of the lung because it is rare. However, almost all cases survival rate is 100% however, fetal intervention may be necessary and immediate surgery may be necessary as well.
To help other moms going through our similar situation and to keep family that is far up to date on her status and to provide as much information as possible, my husband and I want to start an internet blog. I've heard of wordpress and other free blogs, but we wouldn't mind having this journey we are about to take on open to the public. We also beleive in the power of prayer and prayer can come from anyone.
Do any of your moms have any resources or who can help me step by step to setting something like this up? I would greatly appreicate it.

Second question - although our daughter has type III CCAM which can sometimes be the worse prognosis, we beleive she is going to be fine. But I do ask of you to please keep us all in your prayers. Her name is Lilyan Rose, I thank you once again. And I hope I'm able to share this frightnening but hopeful journey with you. Take care and God bless.

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So What Happened?

We opened a site on CaringBridge under LilyanRose. I wonder, can a hyperlink be created so when someone googles CCAM Lung, our site can be included on those searches? Is that a possibility. Please feel free to visit, you have to enter her name as written in the first sentence. Thank you all for your caring thoughts and prayers, we are extremely grateful for the support and very hopeful for her.

Featured Answers

M.P.

answers from Minneapolis on

We used Caring Bridge, and Wordpress for my mother as she battled cancer and lost her fight. We made her Caring Bridge site public. Since she was a strong pillar in her community with many non-close friends and acquaintances it was easier to keep a daily blog on her struggle and tell people about the site, than explain it every single time we ran into concerned friends. As far as explanation it was a bit self explanatory and part learn as we went along. There are many sites that offer tips and advice on blogs, I just googled or Binged them.

All my positive and happy thoughts to you and Lilian. Strong, optimistic parents will help her along!

1 mom found this helpful

More Answers

T.F.

answers from Dallas on

Caring Bridge is a good site and anyone interested can keep up with your story, progress, etc.

Positive thoughts go out to you!

1 mom found this helpful
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✩.!.

answers from Denver on

Sending Hugs...

What a beautiful name.

1 mom found this helpful
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E.V.

answers from Phoenix on

I read a website blog : randycourtneytripproth.blogspot.com. check it out.
Her name is so beautiful, I am sure your daughter is as pretty as her name.
I know it is frightening, but try to be strong for ur daughter. Baby has the bonding with her mom's heart. Try to be positive thinking. Writing a blog and share your stories is helpful for you and others. Maybe God chose you, so finally some other moms can find resource and helps.

Be strong mom and dad. God chose the warriors, the strongest ones to pass the most difficult journeys. He knows you will be able to pass through this.

Even though as if now you are all alone, God is in control. I will pray for the best for Lilyan. Some tips( hope u don't mind): Try if possible to give her breastmilk. Breastmilk is really helpful. My son, who was born with cleft lip and palate, had good health with breastmilk( he never got cold and cough and so on), make sure not do dusting and smoking near the baby. Maybe change the bedding and pillow to a non allergic ones. Never put her on the carpet. These tips were given to me when I had my son. He has cleft lip thatalso make his lungs vulnerable ( we have nose as the filter, while his mouth is open wide and gave access to lungs directly).

1 mom found this helpful

⊱.H.

answers from Spokane on

My SIL used Caring Bridge ~ I believe we were *invited* to her blog, but there may be an option to make it public. Worth looking at b/c the site was fabulous!

Keeping you and your little one in my prayers!

1 mom found this helpful

C.W.

answers from Lynchburg on

Hi E.-

First...sending healing thoughts!

There are 2 sites I am aware of (free) that allow you to journal/send updates for people who are ill. One is 'care pages'...and the other is 'caring bridge'.

I am not familiar with CCAM...but will keep sending thoughts and prayers your way.

Best Luck!
michele/cat

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C.B.

answers from San Francisco on

Hugs, prayers and positive thoughts going out to you. I love her name!

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H.H.

answers from Los Angeles on

I have heard absolutely wonderful things about Caring Bridge. From the responses below, it looks like others have too. I will say a prayer for your family now.

"The child psychologist who thought she had all the answers to parenting until she became one herself." www.themommypsychologist.com

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☆.A.

answers from Pittsburgh on

I used www.lotsahelpinghands.com for my friend battling leukemia.
Not sure if there's a public option but it's a great way to keep people updated, informed and connected for a common cause.
It also has a "task calendar" that can be used for transportation help, meal deliveries, etc.
It's been GREAT for us!
Good luck and God Bless your little O..

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