Sunday, June 14, 2009


I’m being lazy tonight. I’ll give a brief update and post pictures. She woke up happy and wanted ice-cream. She slept most of the morning. When she woke she was very lazy. Later in the afternoon my sister and Garret came up and we took a walk. She is very depressed again so she is back on Ativan. It really seems to help. Also a very good friend of mine sent us a beautiful bouquet of flowers. They were so wonderful to get….lightens our entire room. So as promised the pictures.

“Precious Sleeping Baby.”


Lunch she ate 6 Rotini noodles, 2 fries, 5 bites of chicken (ranch and ketchup)


“Thanks Jill we love the sunshine the flowers brought to our hearts and room!”


Ava’s Peanut Butter Obsession! She ate about 5 tsp today!


Outside University for a walk. What a perfect day.


Back inside…after a dose of Ativan.


You were all waiting for the infamous Ava smile well here it IS!


Oops I lost a noodle!


I changed her dressings today. Her incisions is healing up very quickly and as you see it is already sealed back together.


This is her new JP drains. It gets rid of the fluid/abcess in her abdomen.


I plan on feeding her through her g tube tonight at a very slow rate. She has been pooping great.

Thanks everyone for checking in. I am so tired so I think I will be getting her to bed shortly. Your thoughts and prayers are so heard and so appreciated. Love you all!



Anonymous said...

God bless her! she is unbelievable. after all she's been through, she still has that beautiful smile. always in our thoughts and prayers, Terri

Joanne and John Michael Trontz

CureSMA4Stella said...

So glad she is feeling better. I missed the events of the weekend until now . . . thank goodness for mom's intuition and YES, I AGREE that it's God. You described it best when you said that nagging feeling overtakes you and that is when you know it's time to act!!!
Big hugs and love,
Sarah and Stella

Lacey said...

I'm glad she's feeling better. Hopefully you guys will be out of there soon. We'll be going in Tuesday for surgery, yuk.

My Three Sons said...

That is wonderful news! I'm so glad she is able to eat and poop! Keep up the good work Ava.

Stephanie said...

It's so good to hear happy news, I hope Ava's spirits are up soon.

Anonymous said...

Hello, I have read Ava's heart breaking story and can relate to you and your family very much. Our son, Mason was diagnosed with CDH at birth and flown to Columbus Nationwide Childrens Hosp. where he stayed for 3 months. He underwent the hernia repair at 72 hours old (Surgens not thinking he would make it through next 24 hours). A week later he underwent a bowel Obstruction repair due to the scar tissue from his hernia repair. The third week he underwent a pyloric stenosis repair within his stomach pyloric muscle.
Like Ava, Mason is a very strong and much blessed child to face such a horrifying condition. Not knowing anything about CDH or Mason having this condition until after birth; my husband and I found out quickly the odds and battles that were to come his way.
He too relied on the Vent,TPN and Lipids, NG and NJ feeding tubes for months. We have been warned about the chance of rehurniated problems, and watch him very carefully. We too have been the parents pushing for his medical care when you knowing something is wrong.
Thankful we live only 1 hour away from Childrens hosp. we communited daily when mason had "good" days and stayed the night in his private room when he had "bad" days. After many prayers and wonderful surgens and nurses Mason was sent home and has been doing great!
I wanted to comment on Ava's story, feeling the importance of knowing your not alone as CDH continues to be an ongoing condition/problem.
May God be with Ava and your family throughout this very difficult journey. She is a precious little girl who seems very strong and sound to be in great hands. Hope all is well with her as her little body continues to heal each day.
With all my heart,
Amanda and Mason