B L O G S

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Working Medical Mothers

Being a working mom (or dad) is not easy – and being a medical mom who works can be even harder. Luckily, there are hundreds of families that came before us that can show us the ropes and make it all a little easier. They say raising a family takes a village, so we’ve rallied the “CDH village” to gather advice to help you navigate this balancing act.

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Pregnancy, Mommy Linda George Pregnancy, Mommy Linda George

CDH Preemies

In honor of World Prematurity Day and Prematurity Awareness Month, we celebrate all the amazing preemie Tiny Heroes and their strong families! Prematurity within the CDH community is not uncommon - you are not alone, and there is always hope out there. Although they may be tiny, they are some of the mightiest fighters! 

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Mommy, Pregnancy Linda George Mommy, Pregnancy Linda George

Becoming a CDH Mom

I wasn’t just his mom, I was his medical advocate. I became more than that – I am a CDH mom. He couldn’t fight for himself, so I did it for him, and I always will. I found solidarity in the Tiny Hero community. We are a community. We are a community defined by HOPE.

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Mommy Mommy

The Heart of Tiny Hero

And here we are seven years later. Life has "moved on," but the heart of Tiny Hero hasn't. We created Tiny Hero not only to share Adam's story but to support and celebrate you and your story. Though we may come from all parts of the world, there is one glue that will forever hold us together, and that is the common desire to fight for our Tiny Hero kids.

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Surviving the CDH Journey with Other Kids

I was so worried that I was ruining my kids’ lives by moving them so far from everything they knew, and it turns out I had nothing to worry about. My children were positively spoiled by the love and attention from everyone out there, they made lifelong friends, and got amazing experiences they would not have been able to experience otherwise.

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Pregnancy, Mommy Pregnancy, Mommy

Divide and Conquer for our CDH Baby

I know the thought of going through the CDH journey, miles away from family, is very overwhelming. It is important to remember that ultimately this sacrifice gives your CDH baby a greater chance of coming home faster and in much better health, which could ultimately save money and allow your family to find a new normal, at home, more quickly.

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Pregnancy, Mommy Pregnancy, Mommy

There is Hope for your CDH Baby

If you aren’t given hope, if the doctors do not believe in your babies ability to survive, get a second or third opinion. Seek out a quality CDH surgeon at a hospital that has a top-notch CDH program. Find someone that believes in your baby’s ability to survive and thrive. Find someone that will fight for them every step of the way and has the skills to redefine impossible.

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Feeding, Mommy Feeding, Mommy

Accepting a G-Tube for our CDH Son

We were at a dead standstill with a baby who was miserable while attempting oral feeds and missing out on developmental opportunities because he was confined to a hospital room. It was time to have a care conference and discuss moving forward with a G-Tube.

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Feeding, Mommy Feeding, Mommy

Fed is Best - Feeding a CDH Baby

If I can give you any advice, keep an open mind and remember that it’s okay if your CDH journey doesn’t go 100% according to plan. If a G-tube is needed, view it as a valuable resource and know that it helps your baby meet with success. Also, never stop advocating for your CDH baby. Ask medical professionals and lactation consultants any questions you may have along the way.

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Having a Baby after CDH

My advice to families facing the decision about whether or not to grow their family is this - stay positive and don’t let the fear of CDH keep you from pursuing your dreams and growing your family. There is a 2% chance it may happen, and if it does, there are doctors with over 90% survival. There is hope!

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The Continuing CDH Advocate

“Being an advocate” was something I had heard of, but it really didn’t mean much to me until I received our CDH diagnosis. I had mostly just heard of that phrase as it pertains to “patient advocacy” when I was going to nursing school many years earlier. I never guess that being an advocate would be a role I would take on in a new way, and become one of the many hats I now wear as a parent.

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