Sunday, June 28, 2009

Princess Ava and Queen Terri


It is official, Ava was crowned Princess…. her real title….  “National Little Miss Sweetheart!” She has been through so much with her birth defect and I thought this was a great way to celebrate her uniqueness.

I also got crowned, “National Ms. Heart of the Home” for all my work with Ava’s birth defect, Congenital Diaphragmatic Hernia.

It was given to us by  Coronet Pageants and we are so honored. If you have time please check them out. So yesterday Ava and I did lots of pictures. Enjoy



Thanks to all for your prayers. Ava is eating and doing spectacular! We just can’t thank you enough for your love and support!




We serve and AWESOME God!


Friday, June 26, 2009

God Sent to Me and Angel.

God Sent to Me an Angel
by Paul Dammon

God sent to me an angel,
It had a broken wing.
I bent my head and wondered
"How could God do such a thing?"
When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."
"My children are all precious,
and none is like the rest.
Each one to me is special,
And the least is as the best.
I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.
Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.
So if you find an angel
and you don't know what to do,
remember, I am with you,
Love is all I ask of you."

I had to share this poem with you as it touched my heart. We don’t know why things happen sometimes. We may look at our family and friends and question why their children are thriving and are so healthy with no medical concerns in sight. I am trying to find peace through all of this. I place it all in God’s hands. I can’t figure it out any more. When I let it go a few months ago I am okay with it all. Questioning and worry is very stressful. If you are debating something today. I encourage you to give it to God He wants to carry your burden.

For those that are curious here is what my parents yard looked like after the storm. We are just thankful that no one was hurt. This was the tree in their front yard.


This was the tree in back that had to be taken down due to lightning striking it…..this tree was very close to their house.


This was a picture of it gone yesterday.


We had a great time with my sister Tina and her family last night. A few pictures.




Miss Ava is doing better than she ever has. She is full of energy and loves to play, laugh and sing. She never tires of playing with Lexis and Emeline. She turns the music up really loud and dances even if no one else is around. It is awesome to see her little personality shining through!

Today we got her into the pool. She LOVED it!



Of course with her central line she can not be submerged so we did the boat….she was absolutely fine with this choice!


ALL three of our Blessings!


They were more than happy to be watching her in the pool! AND Ava was ALL smiles!


We couldn’t be happier with how well she is doing. Our little Ava is back and better than EVER. God works so many miracles in Ava’s life and we are thrilled to witness them! Thanks for the continued prayers.


Tuesday, June 23, 2009

One day……….


One day at a time, Sweet Jesus
I'm only human, I'm just a woman
help me believe in what I could be
and all that I am, show me the stairway
I have to climb, Lord for my sake
teach me to take one day at a time.

One day at a time, sweet Jesus.
That's all I'm asking from you
just give me the strength to do everyday
what I have to do.
Yesterday's gone sweet Jesus,
and tomorrow may never be mine.
Lord help me today, show me the way
One day at a time.

Do you remember when you walked among men?
well, Jesus you know if you're looking below
it is worse now than then
cheating and stealing, violence and crime,
so for my sake, teach me to take
one day at a time.

One day at a time, sweet Jesus
that's all I'm asking from you
just give me the strength to do
everyday what I have to do.
Yesterday's gone sweet Jesus
and tomorrow may never be mine
Lord help me today show me the way
one day at a time.

"So don't be anxious about tomorrow. God will take care of your tomorrow too. Live one day at a time." Matthew 6:34,

If you want to hear the tune you can go to this site:

This song has been on my heart today. I was going to record it but the day got away from me. It speaks volumes about how our lives have become….. “One Day at a Time.”

We are trying to be as normal as we can be with Ava….within reason. Grandma H and Aunt Marsha took the girls to a water park today. I decided I wanted to go take a few pictures. Wow was it really hot. BUT so worth seeing them so happy. Ava stayed with Grandma H while I took pictures. Her and I were only there for about 20 minutes. Here are a few.


Lexis and her cousin Abby.


Emeline getting ready to take a swim.


Then we had a terrible storm tonight. Two of my parents trees came down in their yard. (They live in the country.) Brian went out there and was really shocked. I’ll go take pictures tomorrow. My poor Mother.

Ava is thriving. I love to post these happy reports. Sometimes the bad is easier to write….however it is important for me to show you her well side. She has not thrown up since way before surgery. She is pooping great and eating well by mouth and the tube feedings at night are going super! Today we were done with her IV antibiotics and her Flagyl. She is on one by mouth that starts tomorrow. She is such a nut.

Here are some pictures of a few minutes ago. She has been so wild tonight. I can’t remember the last time she was so energetic. She dances and her hands go wild when she is trying to tell us something.




Her tummy is healing nicely. Since we changed the button to an AMT Mini One her skin is totally healed….no redness at all! I will never go back to a Mickey again. Her drain hole is closed and her incision looks well much better.


Thanks everyone for helping us pray. We simply take each day as it comes. We ask God to show us how to care for her better than today and we trust His Word. Thanks for stopping by!


Sunday, June 21, 2009

Pool fun on Father’s Day.



Brian had to work today so we spent most of the day at my parents house. My Mom filled a small pool and Ava loved wading in it. My brother, Amber and all three of his dogs were there as well. Brian joined us later for supper.



I ADORE this picture of Ava and Emeline. This shows you a tiny bit of how they act….so loving! Ava just thinks Emme is IT.


Here is Ava lovin’ the pool.



See the joy! We must live for these happy moments.


Splashin’ in the water!



Daddy joining us for Bubble fun!


Daddy has to protect his little girl from the dogs.


Here are my brother’s dogs. Now you know why she was scared…..

This is “Roxy”.


This is “Tritan”.


And last but not least “Speedy”. He is an old Greyhound that used to race. He is the least of a threat believe it or not.


Daddy holds Ava close…….



“Happy Father’s Day Brian! We love you so much!”

As you can see Ava is back to her happy self. We will take good days and savor them. I get plenty of pictures so we will never forget nor take our good days for granted!


Saturday, June 20, 2009

Iowa and Cows

Ava felt much better with that stupid drain gone. I couldn’t believe the end that was inside her was about 7 inches long and curved at the end. She is much happier now.

We took a drive today out to my Mom and Dad’s. We only stayed about 20 minutes tonight as I knew she had to be hooked back up to TPN at 8 pm. I stopped, got out and took pictures of some cows. They sure said this to me….. “MOOOO!” Ava loved it.


I don’t think they liked their pictures taken! This is good, typical Iowa scenery.


Have you ever seen a cow up close? Sorry but he did not look happy to have his picture taken.


AND a baby calf I couldn’t resist……..


I did snap a few pictures at my parents house. Is she beautiful or what in that orange and yellow dress….pure sunshine!



She has been eating by mouth great. She is almost eating the amount she was before surgery. I also started g tube feeds at night….last night. (Doctor wanted to do this at the hospital but I knew it was too much for her after surgery.) Her heart rate tells me so much. When it is too high she gets an upset tummy and that is no fun. I still have her hooked up to a monitor at night. So little by little I am building her back up…the goal is for her to eat during the day and do g tube feeds to bump up her calorie intake, at night. She needs to gain weight. She weighs a tad over 25 pounds. She is so long and that throws her curve WAY off! So if we can get 1000 calories or more in her a day we can take out the central line. It is super important right now that she stays healthy and gaining. So I’d imagine we will keep it in a month or so….just a guess of course!

One more picture…….Ava loves the small bridge my Dad made by their creek. I happen to get a picture of Ava, my Mom and Dad. This picture is priceless to me. I am so blessed. My parents are the best and they do everything in their power to help us make Ava as comfortable and happy as she can possibly be.


I know this is my third update today but I just had to share more of our day since it became a lot better after the drain was removed. She seems to want to do so much more with that gone.

To our home to yours…….God Bless!

~Brian, Terri, Lexis, Emeline & Ava

Drain is out

So this morning I looked at the dressing around her drain and it was wet. I decided I must redress it as her skin is very sensitive. When I was able to see it one of the holes that were supposed to be inside her were “outside” instead. THAT must have been the reason the air kept filling the bulb. I sure wish they would have looked at it…..and pulled it last night….arghhh!

Here is Ava this morning. ~I want to thank Nancy and her family for sending the frog (Fully Rely On God) on Ava’s tummy.~


Here is what I saw……. Do you see one of the drain holes coming out near her skin? Not a good thing.


I called Pediatric surgery and they told me it had to be pulled. She gave me three options, come there,  go to our local ER, or pull it out myself. Okay everyone is thinking right now…..  “You didn’t?” I did! I called my aunt Janice who is a nurse to help me. The doctor had warned me that there was a curve at the end. I have never seen her in this much pain ever. It was horrible. I held her skin taunt and my Aunt Janice pulled with all her might. She said it was like pulling against a brick wall. My cousin Mindi had to have a drain removed like this and she said that it felt like they were pulling her guts out…..burned terribly bad.

Oh just another day in the life of my little Ava. I was telling the girls afterwards that she has to go through so much. I told them their sister was one of the strongest people I know.

Ava thinks medical thing are normal. Here is an example of what I mean. She knows Tegaderm covers things up. If she gets a hold of one she opens it and puts  it in places like this one. Sadly this makes her feel “normal.”


This last picture I will end with……to me she is pointing to each one of us and saying, “I want you to pray for me!”


Thanks for checking back in…..will the drama ever end? I sure hope so…..I’m just relieved that it is out. She seems happier now.