Ava~ Hope for Congenital Diaphragmatic Hernia.: Sing a song about Ava.

Tuesday, March 10, 2009

Sing a song about Ava.

Hello! Ava is still doing so well. She is quite the hand full! She is so full of energy. One of my CDH friends, Olivia emailed me this wonderful website that has all your children's favorites singing your child's name in their songs. It is www.singasongaboutme.com Ava and I went on the site and here is her reaction to the songs. The price is almost $30 for one cd but we might get one......who knows?

Make photo slide shows at www.OneTrueMedia.com

Also I went to an ecard site and took this picture of the screen. We were doing a "Potty dance", now that was funny!

Again Ava and her feet baths. She loves them in case you don't remember!

Emme got in this one too.

"Think, think, think, Ava did you see which way sissy's went?"

"Okay which one really sucks their thumb?"

Mommy's Little Helper! Oh did I tell you she sanitizer her hands all day long. I guess she learns from example, huh?

Can you believe how much this little girl has grown? She is 37.5 inches long and she weighs 26.5!

So yes I am slowly but shirely upping her feeds. We have gotten to 46ml's during the day and 18 ml's at night. Our goal seems within reach!

Thanks for your prayers, thoughts and concerns.If I look back on just a month and a half ago at this time she was so sick and now she is a little live wire.....almost seems unreal. Thanks God and all the medical staff at University of Iowa Hospitals!

~Terri

5 comments:

Lacey said...: Oh that video is so cute. You definitly need to buy that cd. I wanted to let you know that Ava's blankie is almost done. Its taken Julie longer becaues the thread is a little slippery, but it looks sooo cute on the blankie so its all worth it.; March 10, 2009 at 7:09 PM
Jaime's World said...: What a precious video and wonderful pics!

Wishing you all the best!

Hugs,
Sheryl; March 10, 2009 at 7:13 PM
Fer said...: Love the video and photos Terri!

Praise the Lord for Ava's recovery! I am so happy to read she's doing this well!; March 11, 2009 at 9:51 AM
Alex, Ingrid, Alina & Robbie Houchin said...: Love the pics! Ava is so cute!; March 12, 2009 at 12:48 PM
A simple being said...: stopping by wanted to tell you how well ava is looking, i think she is looking like the ol' ava. by the way we use a site www.starfall.com for anneleise's speech it has great sounds and she loves it so check it out.; March 13, 2009 at 9:20 PM

A Congenital Diaphragmatic Hernia

Hello and Welcome Ava's Blog.

My goal to is educate and bring valuable information to the people that need it the most. If your baby has been recently diagnosed with a Congenital Diaphragmatic Hernia or you know someone who has gotten the devastating news, please know you are not alone. Yes this is a very serious, life threatning birth defect yet there are those that do survive... Please let Ava give you Hope.

If your baby was born with Congenital Diaphragmatic Hernia and has recently reherniated (the diaphragm needs repaired) I have experience with this as well. Stay strong as this too is a very tough fight.

Ava's journey has been quite the ride. My Hope is that you find comfort knowing that not only do CDH babies survive but they can also thrive even after all the obstacles their bodies are put through.

"Carry Hope with you ALWAYS!"

~ Terri L. Helmick

What is Congenital Diaphragmatic Hernia? (CDH)

A diaphragmatic hernia is a birth defect in which there is an abnormal opening in the diaphragm, the muscle that helps you breathe. The opening allows part of the organs from the belly (stomach, spleen, liver, and intestines) to go up into the chest cavity near the lungs. Also forcing the heart to move.

A diaphragmatic hernia is caused by the improper joining of structures during fetal development. As a result, the abdominal organs such as the stomach, small intestine, spleen, part of the liver, and the kidney appear in the chest cavity. The lung tissue on the affected side is thus not allowed to completely develop.

Congenital diaphragmatic hernia is seen in 1 out of every 2,500 live births.

Ava's Fetal MRI Results (May 2006)

Fetus is 23 weeks, 6 days and an estimate weight of 638 grams. Amniotic fluid is 21.2 which is in upper range of normal. Fetus has Left Congenital Diaphragmatic Hernia containing the stomach, intestines, and a relatively large portion of the left lobe of the fetal liver. Heart is moved to the right. The calculated lung to head ratio is 1.3-1.4 after multiple measurements of the right lung. The best measurement of the right lung is 1.6 x 1.7 x 3.9 cm, with a volume of 5.5 cc. A small portion of the left lung is identified within the left apex and measures 1.9 x 1.4 x 0.8 cm with a volume of 1.1 cc. There is no other fetal anatomic abnormalities.

"My CDH Journey"

I've been told I'm a brave little girl. God has blessed me and my family beyond measure. My Mommy feels lucky that I'm still here with them. I hear I have touched so many lives.

This is my story. I am told I am a Miracle. I am!

(My mommy loved this song as a child. She told me it fits my story.)

"I'm something Special I'm the only one of my kind God gave me a body and a bright healthy mind. He has a special purpose that he wants me to find so he made me something special I'm the only one of my kind."

I would be honored if you read my whole story. You can find it at http://www.carepages.com/ avahelmick. Hold on because it is filled with ups and downs. Mom and Dad says it was quite the roller coaster. I not only survived CDH once, but twice. Thanks to all who read my story. God Bless.

~Ava Elizabeth

Welcome to Our Life with CDH.

Our daughter Ava was born with Congenital Diaphragmatic Hernia. CDH is when (inside of the womb) the diaphragm does not form properly. The abdominal organs move up into the chest cavity, compromising the heart and lungs. Fifty percent of CDH babies die. Sometimes with proper diagnosis and treatment, the babies have a better chance at birth.

We held our First Annual, "Ava's Awareness Walk" on March 27, 2008. I was so touched at how many family and friends came out to walk for CDH Awareness. I held back tears as I spoke about Ava's friends that have died fighting this birth defect. I played the song, "Little Angels" that Tamra (my sister) and I created for all the CDH babies. After walking around the beautiful lake we had a balloon release. I did it to remember all the precious angels that had been taken, far too soon, from their Mothers arms. They will forever be in our hearts.

My goal is to educate and provide valuable knowledge and information about Congenital Diaphragmatic Hernia. I want to let as many know of this deadly birth defect as possible and to share HOPE.

Miracles DO Happen!

Faith and Trust in God.

I was comforted many times by Bible verses.

"In ALL thy ways acknowledge Him and He shall direct thy paths." -Proverbs 3:6

"We can do all things through Christ." -Philippians 4:13

"All things work together for the Glory of God."
-Romans 8:28

"Unto thee oh Lord do I lift up my soul." -Psalms 25:1

"Come to me, all you who are weary and burdened, and I will give you rest." -Matthew 11:28

"I truly believe we are handed things in life to make us become better and stronger people. I have learned more about life from little Ava than I have in all my years. I adore all my girls but I will always thank God and Sweet Ava for making me appreciate life to it's fullest!" -Terri Helmick

Hope for CDH.

Tuesday, March 10, 2009

Sing a song about Ava.

5 comments: