“Smelling God’s beauty….true innocence.”
Good afternoon everyone! Well Ava is just doing pretty good. I decided that the dafadilles and the tulips may not wait for the rain to subside and I wanted pictures of this beautiful flowers with my miracle daughter. They holler, “Spring is finally here!” It is a tiny chilly today so we both wore jackets. I have been discovering new things on my camera. I knew I had “color accents” but was not able to find the time to figure it out. My wonderful cousin Mindi showed me how! (Thanks Min!) Now I am hooked. I usually always name my pictures.
“Bending to smell the beautiful tulips.”
“Who made you the miracle you are, Ava?”
This picture reminds me of the olden days. Why I’m not sure…maybe her expressing. Look at that face! I love what I see when looking through the lense . That is why I love photography, you just never know what you will capture.
Photography is art. And the art is in the “eye of the beholder”. So for you out there that like normal pictures here are a few as well.
“Happy smiles to warm your heart.”
“Looking at the pretty flowers.”
I am in awe of Ava’s quick turn around. She is eating like yesterday. I scheduled an appointment with a new GI Doctor in Iowa City on Thursday. I feel like we all need to get on the same page about Ava’s goals and our long term plan.
The last few days I have been fighting with myself about whether to allow the “Mommy” in me to rule over the “Mommy nurse”. The “Mommy nurse” knows Ava needs rest and all the calories I can muster in her…..while the Mommy wants her to eat by mouth and do the best she can without so much tube feeds. Well today we found a happy medium and I feel okay about it. I set her at 30 ml’s per hour (24 calories per ounce of Elecare…. we had to step down a bit for her tummy to adjust.) as long as she doesn’t mind being hooked up. IF she pulls at the tube I take it off for an hour and try again when she does feel okay about putting it back on. I am continuing to let her eat all she wants by mouth. When she is at a low rate she still has the desire to eat.
I know God is helping Ava and he is helping me as well. This journey gets very long and tiresome. I may “appear” as though I am fine but some days I get down, I cry and I become sad at all our daughter goes through. I was listening to the radio the other day and the song, “The Reason” came on by Hoobastank. I cried like a baby listening to the words. This song expresses my feelings at this point in this journey. Here are some of the words.
I’m not a perfect person. There’s many things I wish I didn’t do. But I continue learning. I never meant to do those things to you. And so I have to say before I go. That I just want you to know.
Chorus- I found a reason to be. To change who I used to be. A reason to start over new. And the reason is you.
I’m sorry that I hurt you. It’s something I must live with everyday. And all the pain I put you through I wish that I could take it all away. And be the one who catches all your tears. That’s why I need you to hear.
And the Reason is you!
I am her Mother and I feel some sort of responsibility for this terrible birth defect called Congenital Diaphragmatic Hernia. I know any doctor can tell me that it is not my fault but I still feel partly to blame. No I never drank or smoke. I was so protective of my “bump” when I was pregnant. Ask anyone I tried to eat right and I did all the right things. Despite all that, she was given an unfortunate life sentence. Yes she survived at birth and that was the first miracle. BUT it is hard to see her struggle through a sick body…….however God has been so good to us. He shows me daily that she was born to teach her mama a few things…..and many others who follow her incredible journey.
I thank you from the bottom of my heart for coming to our blog and carepage. I never thought in my wildest dreams that we would have thousands of followers. Our blog has gotten over 35,000 hits in just 6 months! If I can help just “one” person realize that “God cares” and “He hears our cries” then I feel it is worth my time and energy.
Your thoughts and prayers are amazing people!