Sydney - "I was born with a congenital diaphragmatic hernia- basically a hole in the diaphragm. It’s a life-threatening condition for infants. Part of the condit...
Monday, November 17, 2008
I put this video together while Ava was in the hospital fighting for the second time for her life. Congenital Diaphragmatic Hernia is a very tricky birth defect. We had no warning of Ava's sickness. She just stopped eating and then the next day she became very sick. I took her to the doctor three times before they took me serious. Friday October 3rd she was life flighted to University of Iowa Hospital. This was no flu Ava's synthetic diaphragm had broke. Her intestines over time had grown into the gortex patch causeing it to be weak. Somehow the body was trying to rid the patch. Her intestines somehow opened up and swallowed her patch, causing a total bowel obstruction. Our worst nightmare had become a reality. We knew this was possible but was not at all ready for what was to follow. Ava fought hard. We nearly lost her. I am amazed at her strength and her awesome will to survive.
I just want to make parents of CDH children aware that there are many signs of reherniation If in doubt please go to your Emergency room. Things can get out of control fast. This video high lights the first signs and syptoms.
Saturday, September 27, 2008
This video was inspired by Liz and Shane. Their daughter Nayeli also has CDH, they put all her ultrasound pictures together, which made me think about all Ava's ultrasound pictures. I cried watching Nayeli's video knowing that she is still safely inside Liz and her journey will begin in a few short weeks. Liz and Shane you two are wonderful parents!
I ran across this song, "I'm Your Angel" by Celine Dion and R. Kelly. The words are so fitting to this video. We were Ava's angel and she was ours! Please say a prayer for little Nayeli that she will not only survive but she will thrive as Ava has been so blessed to be.
I still get very emotional putting videos together. Oh how life means something extra special that we were so fortunate to have three daughters. They all have their own ways of bringing joy into my live.
The very end of the video says, "God on the mountain is still God in the Valley. Keep hoping and praying, God hears us!"
(An update ~ Ava's CDH friend Nayeli, was born in October and she is doing great. She too survived this horrendeous battle and is home with her Mommy and Daddy in California! Nayeli They have become special friends to us!)
Saturday, September 6, 2008
This video was made in celebration of Ava turning two. I don't ever want to forget how she fought for her spot in life. Her courage is very evident. I once heard someone say, when I was pregnant with Ava, "Our children chose us." It brought tears to my eyes. That makes this CDH "monster" a little easier to get a hold of. We are very fortunate and bless that we have three beautiful healthy daughters. God is good!
Wednesday, July 23, 2008
I created this video of all the CDH babies for a special reason. I felt they needed a voice. I captured the emotions of the parents by putting messages by each child. You can just feel the love and support for these Congenital Diaphragmatic Hernia children. Yes 50% of the babies are now in Heaven but every single one of them are loved more than you could ever imagine!
When I wrote the song, "Little Angels", I wanted to make others understand what we faced. Our worst nightmares came true. The news hit like a hurricane. The distruction and pain lasts forever. To be told that your unborn baby will likely, be born and die in your arms is something no Mother should ever hear. I believe God gives these special babies to only the best parents. He knows what we need. He promises never to leave us. When the days become dark lean more on Him. Cast your worries and cares on Him he will give you rest. He did it for us.
These babies have to be heard. Please tell someone today about Congenital Diaphragmatic Hernia. The sooner the diagnosis the better the outcome.
My mission with this video was to tell others there is STILL Hope. When the diagnosis looks poor and the doctors tell you that death seems the only option, I am here to tell you that they don't know the future. Only one person knows tomorrow and that is God. He knows the end before the beginning!
There is Hope!
This video I made of Ava's fight captured the pain we saw daily. I tried to show the reality of what we faced. It is so hard to see your newborn fight so hard. On three different occasions we nearly lost her. I remember praying, "God not my will but Yours." I had come to terms with all that was happening with her and I just wanted her to either pull through or go to Heaven and feel no more pain. She however had her own plans. After her surgery she grew stronger than ever. God was always there holding her in his arms.
We held our first annual, "Ava's Awareness Walk" at our local hospital. It was awesome to see so many out supporting Congenital Diaphragmatic Hernia Awareness Day with us! We know how important it is to raise Awareness to this very life threatning birth defect that still takes 50% of all babies that are diagnosed with it. Thanks to all that donated. It was a perfect day to honor Ava and all her friends!
This is the second video I did for her. I knew it was important to stress that although her survival rate did not look good we held onto the Hope that God would give us that one little Miracle. I grew so close to God in this difficult time. I found a peace that put my heart to rest in even the worst days.
This was the first video I created for Ava. I simply wanted others to know how hard she fought to stay here with us. It was very emotional for me to see this as it was, her incredible strength. Her beautiful spirit made it all seem okay to bear. We love that she was given to us. Through all the trials and hard times we learned that life is worth every second. It made us see that we should always cherish all that God has given to us, great or small!
- I was blessed to have three beautiful daughters of course by my wonderful husband Brian. We traveled a very difficult road when we found out our third daughter, Ava had a life threatning birth defect called Congenital Diaphragmatic Hernia. This turned all of our lives upside down. We have learned that life is a precious gift from God and we should treasure each and every second we have with our loved ones.