Saturday, May 3, 2014

Featured CDHer~ Lillian

Lillian 3

My name is Amanda I was 18 when I married my husband and 20 when I had my first child. We named her Lillian when I was about 30 weeks pregnant we were sent to a specialist due to the fact that she wasn't growing much they brushed it off and said my due date was to soon and moved it 2 weeks later. But she ended up being 2 weeks early and was born... 5lb 14oz. She was perfect nothing wrong and we were able to go home 48 hours later. We though she was a healthy little girl just on the small side. A month went by still perfect and we thought she was healthy. The morning my husband was suppose to deploy she awoke crying and gasping for air. Right away we knew something was wrong we rushed her to the emergency room, after a few tests they ordered a chest ex ray. Minutes late the doctor walked in saying 50 percent of her left lung was collapsed and the other half was filled with her intestines and it was CDH the 3 words no parent wants to hear. We were rushed by ambulance to mercy children's hospital 2 hours away with in a few hours she was sent to emergency surgery about 2 hours later she was brought back to us with 5 different incision. The first night was hard but She did so well after surgery we got to leave the next day! Recovery was long but we made it though with no pro. We were so blessed that we had it for the most part easy. Being a young mom is no easy task but  when u find out your baby's sick everything changes and you realize just how strong you are. I'm so blessed that my husband got to stay back for a few extra weeks to be their for us. She is now almost 5 months old and doing amazing we aren't sure what to expect from her lcdh diagnosis in the future but as of now we take it one day at a time and cherish every day with our little girl.

Lillian 1

Lillian 2

Tuesday, February 11, 2014

"Living with Scars" project

Hello and Welcome to the Blog. Today we are celebrating our three year Birthday! It's so exciting to be able to connect with so many people on line through face book, our blog and through email.

I wanted to start a "project" to educate people on what congenital diaphragmatic hernia truly has come to mean to so many. My daughter is not at all shy about her scars. She knows that without them she would not be here today. I make an effort to kiss her scars and tell her how beautiful she is to me. The older she gets the more and more she understands that not many people have vivid scars like her. She is Blessed to be alive!

I hope that you will all join me in getting the word. Many times CDH is spoken in the cdh community and we all know the definition. However our friends and family rarely know that cdh is as serious and life threatening unless they walked the road along side of us. We need to educate the outside world.

Before I was pregnant with Ava I had never even heard the words... congenital diaphragmatic hernia. I had heard of "a hernia" in fact my Dad had one for years. It bothered him but wasn't that big of an issue. When the doctor explained at out 19 week ultrasound that this is what our unborn daughter had I was thrown off guard and wanted to protest. My other two daughters were born healthy and it just couldn't be. The more he kept talking the more I knew this was very serious. They offered termination and then it hit me... she was most likely going to die after or even before birth. I searched the internet with some VERY scary facts. I found no one that gave me a good outcome. I couldn't find any survivors. Surely there was someone out there? My husband urged me to stop looking online, instead I looked at top CDH hospitals. We found one that fit our needs and with much prayer and guidance settled on it. This hospital gave us what we so desperately needed... HOPE.

So when I started Raising Healthy Congenital Diaphragmatic Hernia Children, three years ago I knew I had to connect people and show them not only were there survivors out there but that most thrive after their long difficult births. Yes many have life issues such as feeding difficulties resulting in low weight, asthma, bowel obstructions, reherniation, reflux, scoliosis and many other things but they are still kids with LOTS of life to live!

Will you join us today?

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Here is my daughter Ava.

What do I think about when I see my daughter's CDH scars?

I have a feeling of complete gratefulness that she is here with us today. I feel very blessed! It shows how hard it must have been for her. It reminds me never take life for granted, that we are never assured tomorrow. I know that her scars are just part of who she is... a fighter in all sense of the word. I am SO proud to be her Mom!

A diaphragmatic hernia is a birth defect in which there is an abnormal opening in the diaphragm allowing part or sometimes all of the organs from the belly (stomach, spleen, liver and intestines) to go up into the chest cavity, compromising the heart and lungs.

I really appreciate all the CDHers out there. The Moms and Dads... you make it possible for the page to be a helpful to other parents. I started with only a few cdh friends and now it has exploded and we are in all parts of the world. Thank you so much for making the page and blog possible!

~Terri Helmick Founder and Creator of Raising Healthy Congenital Diaphragmatic Hernia Children