Monday, 27 April 2009

New CDH Project - Need Feedback!

Hi Everyone,

Okay so I had an idea the other day and wanted to know what you all thought. I've been watching the inspirational things people have been doing, saying, making and writing throughout their CDH journeys and beyond. For example, Maxton's mummy has written the most beautiful book and created some wonderful paintings along with many other parents who have found comfort in the arts. I therefore thought how great it would be to create a platform from which all of these CDH inspired thoughts and actions could be transfered whilst at the same time increasing CDH awareness.

It isn't just 'things' which will be on the site but also words and pictures, bible verses and music. It will be a site where we can all share 'those things' which have helped us get through these extremely difficult times! Literally ANYTHING that has inspired us.

Example - There is a surgeon here in England who has written his entire manifesto on the potential causes of CDH and he inspires me - hence I would invite him to write a small amount about his cause.

On the other hand I have met a number of CDH angel and survivor families who have inspired me to the point of tears and I would love them to share their stories.

This is not my website this is a website for all of us to share our inspirations throughout this journey and spread awareness.

I was thinking the categories on the site may be as follows:

Inspirational Words
Inspirational Music
Inspirational Art
Inspirational Angel Babies
Inspirational Survivors
Inspirational Projects (aka charities/anything to raise money)
Inspirational Medical Professionals
Inspirational Blogs - (a link to this little community)

This really is the beginnings of the idea and clearly I would love some feedback. Please let me know your honest thoughts. If you already have things which you would like added to the site please email them to me at content@cdhinspirations.org.uk

Thanks guys


Beth Reeve

6 comments:

Maxton's Mommy said...

I think that sounds awesome! :-) If it were able to be a site that would come up if you searched CDH that would be even better. I know I stumbled along the "blog" world by finding baby Claire. I that didn't come up on a search.. I'm not even sure where I found it. But thank God I did! By the way, thanks for mentioning me. I've had to channel my sorrow into something and feel like I am definately helping myself by doing this. :-)
Ash

Liz and Shane said...

Beth,
What a great idea. I will email you with what I came across while I was pregnant with Nayeli. There are a few bible verses, songs, and blogs that gave me hope and faith.
Praying for you and James.

Liz

Stephanie said...

I think this is a fabulous idea. we have quite a few inspirational bible verses on our blog. I'm happy to forward them to you if you like.

Stephanie

Chanda D Brady said...

I love your idea!!! There are those of us that blog and I've noticed through others' tickers, that there are even more that simply like to read all they can. I definitely have days where I simply want to spend time absorbing all I can from others, there are days that I want to cry and days where you just want to feel inspired...granted days can mean this hour and then the next hour. ...regardless, brillian idea. Please just ask when you need help with anything. I'm not all that computer savvy but I'd do my best.
Chanda...Ireland's mom

Anonymous said...

Hi Beth,

I accidently came across your blog, while researching CDH.

Kudos to you! for updating this journal and sharing your story.

Baby James sure will come out a winner and is a miracle baby. My prayers are with you and your family.

I am in the similar boat as you.

My story:

29weeks my first baby.
baby with isolated left CDH.
current AFI: 19.5
current LHR: 2.44
fetal weight: 2.5 pounds
EDD: July 17, 2009

No other birth defects.
Amniocentesis was done to check for all chromosome related problems.

Perinatologist has given above 90% chance of survival rate.

Biometrics of the baby is as per gestational age.

My baby's CDH is a little different. It's not a hole in the diaphragm. But its a sac (or a pouch like appearance) Appears that since the stomach is pushing against the diaphragm, diaphragm is getting pushed against and a sac is getting formed(seems like).

CDH in itself is quite rare. I have to be honest, I have never met anyone with CDH as a defect in my life.

My baby and I are getting care at one of the best hospital's in the world. They are a exclusive children's hospital caring only for sick children. Even here, my case is quite rare, where there is a sac instead of a hole in the diaphragm. Since there is no name for it, they are treating it as isolated CDH.

It was news for my husband and I.
We are just being positive and hoping our baby boy will join us soon and we will form a new family and make us complete.

I will stay in touch with you through your email.

God bless and keep the faith.

Dawn at CHERUBS said...

Wow, we at CHERUBS really need to do a better job at advertising our services and materials!!!! :) This is the 3rd blog I've read tonight talking about things that people are doing because they haven't found those items on the internet. Yeah, we're doing a really BAD job of being able to find the info easily! We'll have to work on that! Thank you so much for this post and letting us know this!

We have an entire section of inspirational articles / poems / stories and quotes on our site. As well as a very, very simple Parent Reference Guide for CDH, glossary of medical terms and so much more.

Please drop by anytime - that's what we're here for!!! :)

http://www.cdhsupport.org

Keeping you all in my prayers! If we can do anything for any of you, please let me know!