“Thank you Lord for the Good days!”

Ava had a SUPER day today. It seemed as though all pain and discomfort was gone. Her tummy was not as distended and she ate GREAT! I will stop typing and let you see for yourselves. God is SO good!

VERY early this morning.

Grandma and Ava.

“How sweet is this picture?”

Couldn’t resist the feet shot!

Weird fact: This is Iowa’s very first jail cell. Yes it next door to my parents house. Great for photos!

“Smiles anyone?”

Daddy rigged up a camp fire tonight to roast marsh mellows. The girls had a FUN time! They were impressed with him! I was too!

So SHE had a great day. Please pray that things will go good for me tomorrow. Grandma will be staying with Ava and Grandma H will be taking me to the Dentist. Yikes.

Keep praying for Miss Ava! God is good!

~Terri

The great lesson….. “Shaking it off”

Isn’t life funny? I was doing an update on Twitter today and ran across a very wonderful blog. http://dynamicliving4u.blogspot.com/ Diane really made me step back and see all of this in a different light. I HAD to share her story about the MULE. I hope you find it as inspiring as I did.

This is the story of the mule that fell into a deep dark pit one day. He was in there wondering what to do. Some time later the farmer heard a sound that he was unfamiliar with. As any good farmer would do he walked his land in the direction of this unbearable noise. When the farmer looked down into the pit, (which by the way, he almost fell into himself) he saw that it was his prize mule. Not only was the farmer shocked and concerned for his animal but also for his own ability to get the mule out.

The cry of the mule became unbearable and the farmer ran for help. Soon the word was out and many of the farmers in his neck of the woods offered their help. Try as they might to get the mule out they came up short each time. Finally they came to the consensus that the best way to put the mule out of his misery was to bury him alive. Each got a shovel and in sequence they began to throw dirt on him. After several hours and hundreds of shovels full of dirt being dumped on the mule he simply walked out of the pit. How could this have happened?

Each time the farmers threw dirt on the mule he simply shook it off, packed it down under his feet and stepped up higher. One characteristic of a mule is that they are known to be self-preservationists and self-thinkers. These traits also contribute to the "stubborn as a mule" cliché. A mule thinks for himself and decides that a particular situation may hurt him. In this instance, the mule’s stubbornness and persistence paid off and saved his life!

This was Ava this morning. Her poor tummy.

Ava is not feeling well today and I am debating taking her to the hospital. She has not eaten today but she is drinking. She also had 2 large bowel movements so I’m confident things are still moving through. Her tummy is rumbling very loud. A sign that the antibiotics are no longer working. Not sure any will help at this point. She is sitting next to me on the couch right now and she is smiling. She just gave me her extra sassy and I have it in my mouth. I asked her if it made her feel better. She shook her head yes. She is a character! I will keep watching her and if I feel she is getting dehydrated or is really uncomfortable we will head to Iowa City.

Keep praying as I feel God is here holding her in His strong arms!

A few pics I just took. I couldn’t resist sharing them with you all.

Her hair is really getting long. She loves for me fix it in a pretty style! How cute is she?

~Terri

Swallow study…;(

Today was a very long day. We got to Iowa City ay about 10:25 am. Ava was not interested at all. Who can blame her from what she remembered last week with the enema study? I reminded them twice that Ava can NOT tolerate any amounts over about 65 ml’s an hour. I also told the radiologist…..however when I saw Brian cold stare I quickly realized they were giving her lots more. She received about 120 ml’s I believe. As soon as I realized what was going on it was too late…..she threw most of it up. I don’t know why they don’t listen to me. Wouldn’t it make more sense to put in whatever she could tolerate and wait to see where it goes? Oh no it makes more sense to get as much in as they can and then make her have a sick tummy for the rest of the day. Arrrgghhh! Some days I want to throw my hands up and say, “Why am I here? Can you hear me?” But mostly I want to grab her in my arms and run as far away from any hospital as we can. Is it so hard to listen to a Mother?

See her fear?

This is kind of hard to see but this is a picture of her insides.

Daddy helps calm his precious.

Ava’s big tummy. She was finally finished and this was her last picture after the final x ray.

The test showed that Ava has huge dialated loops in her small bowel. They could not find the narrowing parts but think they know where they are. They think they are just before her large bowel but still “in” the small bowel. The radiologist said that Ava’s bowels are three times the size of mine. Yikes that is a LOT of air. I am so fearful of what is to come for Ava. Will this surgery on Friday be the fix we need? Will she become worse? Will she died? Oh my mind is going wild. I feel her apprehension of the hospital. She gets so worried each time we go there. As we pass by her floor door she shakes her head no and starts to cry. I am thinking we will be here next week at this time. I thought I was getting myself prepared for her surgery but instead I’m feeling worse about it. I know it has to be done but wow is it hard to face.

Ava is SO special that she gets the royal treatment……any amount of stickers her heart desires!

We were at the hospital doing the test for over 4 hours today. They did the initial test then we took pictures once an hour. We shall see what Ava’s surgeon thinks about the findings.

Since we were trying to pass time today we went to the medical museum again today. This is an actual lung that was hurt by pollutants.

This is a simulation of our heart.

Ava next to a very old wheel chair.

AND we found a quiet place to hang out and I found this gorgeous plant. It was so beautiful we thought it was fake. It wasn’t it was VERY real! How beautiful is this?

Thanks for stopping by. I will leave you with this Bible verse and a prayer.

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.
Matthew 11:28-30

“God give me the strength tonight to rise to this challenge and lead us down the healing path for Ava. I know you love and care deeply for us all. Thanks for your patience as we struggle to figure this all out.”

~Terri

"I think I can.....I think I can."

Ava has been hanging in there. On Monday she seemed better and started to get her appetite back. Then on Tuesday the throwing up started She only did it once but the volume was over 350 ml’s and it was projectile vomit…….or should I say projectile poop? It was horrible but I have to say it is nothing new. Shocking to most but it has just become part of our lives the last 8 months. So I had switched her to Gentamocin on Sunday but that did not seem to help her that much so much but decided to stick it out.  Wednesday I weighed her and she was up to 26 pounds. I was SUPER happy about that! She did however throw up two times so I decided that perhaps this antibiotic regimen was not working so I called the doctor. He called in Augmentin last night. So far it has helped her. She did not throw up today. She also pooped like a champ!

Okay so you know how when kids are sick us Mom’s down play our illnesses because WE can’t be the slightest bit sick?….:) Well I’m no different. I have had a tooth ache for about 4 months. I remember Ava being in the hospital and telling myself that it will “just go away”…..well it hasn’t. I decided to bite the bullet and go to the dentist yesterday. I was so desperate that I even took Ava with me, as there was NO one to watch her. My baby is terrified of hospitals and doctors. I explained to her in the Suburban that “Mommy had to see the doctor THIS time.” She shook her head no. As we walked in I saw her tense up and I again reminded her it was okay and that no one was going to touch her. It didn’t matter as soon as the dentist came in she started crying. She was in her stroller and I was in the chair. I had no choice. Then it was time for x rays and she couldn’t be in the room with me. A very nice nurse came and strolled her to get some stickers…..a little bribing doesn’t help does it? She bought it and was very content. She sat very still and waited until I was done. Lucky me I have decided to let them pull one of my molars. I am all about saving teeth but I am a little stuck. It will take me about 3 trips to Iowa City to have a root canal done. (I’ve had 3 done already.) I KNOW how much fun they are. Last time I sat for two hours. I know I just don’t have that kind of time with Ava the way she is. The new Ava term, “Fragile”. Okay so I go to the surgeons office because my dentist can’t do this procedure. I explain to them about Ava and they (BY THE GRACE OF GOD) are getting me in on MONDAY, the 1st of June. I was amazed at the power of quick prayer. Oh plus since I am being put under I have decided I might as well take this opportunity to have my two wisdom teeth pulled. Smart or dumb on my part not sure yet. I have little time to think about myself. I am just hoping and praying that I will breeze through this and be up to par for Miss Ava. I have no other choice. I have had two wisdom teeth removed about a year and a half ago and I had no problems what so ever so hopefully it will be a repeat! So Ava got goodies from the docs office and I got an appointment.

Her tummy has gotten bigger and bigger. It looked like this Tuesday night. It measured 54 cm’s around her belly button and 57.5 cm’s above her g tube.

Tonight she is measuring 55 around her belly button and 58 above her g tube. Now come morning it is down around 51 cm’s and 55 cm’s. She is so sleepy.

Tomorrow is her swallow study test. I am NOT looking forward to this at all. She hates the x ray room and I don’t blame her one bit. I just wish they would have got this test done last week when we were doing the enema one. She has handled both at the same time before. I asked but they were so sure she wouldn’t need another swallow study……huh funny how I was right. However there must be a reason why we have to do it. So I am curious to see if we can visually see where the blockage or narrowing bowel is. The study’s are really pretty neat to watch. I will see if I can video it tomorrow. Brian is going so I will have an extra set of hands!

Pray Ava stays good until surgery on the 5th as I need surgery myself. “Hang in there” I keep repeating over and over to myself. Like the Little Engine that Could. “I think I can.....I think I can!”

~Terri

Happy Memorial Day!

If you would like to add this to your blog you can email me at mycdhlife@gmail.com .

Ava is hanging in there. We went to Grandpa Helmick’s grave tonight. Grandma put in a beautiful bench at the site. The girls wore their shirts Valerie made for them. I SO love them!

The night has ended with Daddy reading her one of her favorite books.

Happy Memorial Day! Thanks for those that have served and died for our country. Also it is a day of remembering the loved ones we have lost. We miss you everyday.

~Terri

Uh-Oh

This is Ava’s favorite word. See this is what “Po” from Telletubbies says. (By the way if anyone has any old Telletubbies VHS or DVD shows around let me know as we only have ONE and we watch it over and over. I’m not sure they even make them anymore.  mycdhlife@gmail.com) “Uh-oh” She was doing so well the last few days. I was doing overnight feeds and she was getting 500 calories just at night by her Compleat Pediatric. Today however I know we are starting the down hill slope. I can just feel it. Yesterday her tummy was rumbling. This morning the running water sounds. I am not waiting for the throwing up I started her on the Gentamycin tonight. I am hoping to avoid the whole day of throwing up and baby-ing her gut. The antibiotics usually last about 7-9 days then the “episodes” start again. With the start of a new drug for some reason the episode disappears It has happened 4 times so far.

She loves going down to the “creek” at my parents house. It is a ritual we HAVE to do each time we go there. She loves to cross the small bridge Grandpa Diercks made. It is a HUGE accomplishment to her. I will always remember THIS little thing makes her SO happy!

She is such a sweet heart…….These next several pictures are my favorites.

Ava and the wide open world!

Although she didn’t feel up to par she still enjoys being outside! “Look out everyone here I come!”

While we were at my parents this morning my Mother got a phone call that my Grandpa Hightower had fallen and they were taking him to the ER. He went to our local hospital but then transported to Iowa City….huh why does that place sound familiar? We later found out he cut his head and he broke his hip that they just replaced a little while ago. Please say a prayer for MY grandpa. He is 80 and getting old. My Mother doesn’t think he will live that much longer. The girls call him the “Apple Grandpa” because he always gives us apples!

Well I will keep a close eye on Ava and try to avoid the hospital yet again. The last two episodes she has gotten over the hurdle here at home. Pray. She definitely needs surgery as this is not going away. I am starting to accept it slowly but shirley.

I hope you all have a great Memorial Day tomorrow. Please stay safe! Love to you all!

~The Helmick’s

Amazing ANGELS amoung us.

Karen, one of my grade school friends that I haven’t talked to in many, many years sent me this video today on my facebook page. Her brother just got into a horrible accident at work and is fighting for his life. His wife just had their new baby, so please pray that God helps him fight to live.

We have angels EVERYWHERE!

Nancy one of Ava’s faithful followers sends me ecards and it touches my heart each and every time.

Nichole from our town is generous in spoiling the girls. She buys them something every other month.

The Collins Crew is constantly sending odds and ends to the girls to fill their days with happiness.

Valerie and Laycee sent the wonderful gifts the other day. Valerie has been such an inspiration for me, sharing her knowledge and her gift of uplifting.

Internet Grandma Gayl is without fail sending presents on every holiday.

My cousin Mindi and her family making food when we returned home from the hospital.

The Shoplands and the Decrenscenzi, our wonderful friends from Pennsylvania send goodies when Ava is in the hospital.

Wal-mart friends also send Ava gifts while she is recouperating in the hospital.

I have many internet Mommies that help me sift through my theories and are always her to support me in all my decisions. They help me to vent my frustration and it is calming to know that these Mom’s have been where I am today and they understand COMPLETELY!

Then I have friends that will let me cry on their shoulder, be there when I need them and never think bad of me.

Our many, many readers of our blog and Care Pages for spending countless hours praying and meditating to God to help our little girl feel better.

AND My fabulous family that keep me going.

God is just AMAZING! We as people sometimes (mostly always) dwell on the negative things and we never think about the “whole” picture.

I love the story of the little boy and his grandmother. She was diligently making a cross stick and he was sitting on the floor looking up at her fast hands going to work at making this magnificent thing as he had heard so many of his family say.  He looked up at the strings going every direction, and colors not looking so good to him. He asked his grandma why everyone thought it was So beautiful? Gently grabbing his arm she raised him up to see the material she held in her hands. As he saw the top of her masterpiece he gasp in amazement. Grandma it IS beautiful!

Sometimes we don’t understand why things are happening in our lives. We see the underneath just like the little boy. BUT if we could look down and see what God sees we would know that in the end our lives are the most beautiful thing ever created!

Ava was sent to us for a reason. I have said since the day we got her diagnosis of CDH and our lives changed forever, that she was a blessing and a gift from the almighty God. We knew if she did survive it would be by the grace of God. We understood the power of prayer and we were blessed to have this adorable little girl to call our third daughter. Yes it gets overly tough some days but we have the faith to know that she is in God’s hands……as we ALL are. None of us know when we will take our last breath. We have to live in faith and enjoy life everyday, not just the good ones.

I encourage you today, to find just ONE person to lift up. Send them a card. Call them and tell them how much they mean to you. Smile to a stranger. Grab your son or daughter by the hand. Stop time for one second, look in their eyes and tell them you love them and will love them forever. Cherish the small things. Sit outside, close your eyes and listen to the sounds and praise God this second that you are alive. I promise you our lives take on a new meaning and God will bless you for taking the time to enjoy all that He has given us.

I thought I would add one of my favorite songs. It is a song that hits directly at my heart. I some how feel compelled to sing it for you today. It is called, “For Those Tears I Died.”

Make video montages at www.OneTrueMedia.com

I want to take this journal entry and personally thank you all for all you do for us. We appreciate ALL the thoughts and prayers. God bless you all and THANKS for being a part of our lives. We would not be where we are without your help!

~Brian, Terri, Lexis, Emeline and Ava

Surgery is a GO.

Hello Ava followers. Ava is doing great today. She is back to eating whatever she likes. We took her to the University this morning for an enema study test. They looked at her large intestines, placing 160 cc’s of barium “up” her bum….not fun at all.  She was not a happy girl and cried through most of it. They found that everything there is good. The large bowel and colon looked normal. So the blockage is most likely in the small bowels, which is what Dr. Shilyanski expected. We will be doing a swallow study next Friday morning. They will place Barium in her stomach through her g-tube and see if they can find the problem so they have a better idea of where to look when doing her surgery.

After the study we went to see Dr. Shilyanski and Josh. They are both such amazing and caring medical people and we are so proud to have them on Ava’s team. I really feel they take my concerns very seriously.

I did bring Emeline with us this time as it is SO hard for me to juggle the appointments and Ava. She was a great helper…..but boy oh boy does Emme yap. See I like quiet a lot of the time and she loves to talk…..bad things she is a repeater. Oh well gotta love her for it!! She made this drawing, “Ava you Rock!” Is that a great sister or what?

Oh and Emeline kept Ava entertained by reading her books. It was adorable!

Oh and before you all ask I will let you know that Ava took her first “real and normal” kid fall last night. She was running, (Which she started to FINALLY do about 2 months ago.) trying to keep up with her sister, and boom she fell on the gravel. She scrapped her face and her knee. I was getting a much needed hair cut and when I returned she was on the couch with tears in her eyes. My parents were watching her and they felt SO bad. She is a little energetic little girl and it was bound to happen. I felt bad that it happened to them and not while I was around. My poor dad really took it hard. I told them not to worry about it as this was one of the first normal kid thing she has done in so long. It didn’t make it any easier on Ava….poor baby.

Ava’s first scraped knee.

The surgery date was given today……..it will be done on June 5th. AND since she is now eating she will have to be admitted the night before to do a “cleanse” of the intestines. This could be done at home but I guess it might just be easier all the way around to have them look over her there.

My mind “gets” that she will have surgery but my heart is far away from accepting this thought at the moment. I suppose since we have two more weeks it may get better with time.

Valerie and Laycee sent the girls a package today and WOW what a wonderful gift…….their own personalized shirts. AND Miss Ava got an “Ava” blanket, and Ava cup and many adorable outfits. (She needed them badly!)“Thanks guys we LOVE it all! You made our day….especially after a long doctor visit! Ava smiled HUGE when she saw the “Wiggles” stickers. “Valerie you over did yourself!”

I will get a picture of all three of them with their shirts on together. I can’t wait!

These are a few pictures of her tonight at my parents house.

This was a gorgeous picture of Emeline I had to share.

Oh and by the way Valerie she has already fallen in LOVE with her new blankie!……;)

At the end of a long day Ava is finally resting. She is so full of life! I am amazed at her strength! Her sign language is really picking up. I am SO proud of her. She knows “more”, “please”, “ice-cream”, “hot”, “shoes”, “socks” and her favorite “bye, bye!” She still gabbers but finally things are making sense. She can say the words, “Bob” (that is her way of saying Mom.) “Eat”, “Uh oh”, “WOW”, “please”, and “da-da”. It will come. We will wait.

So please say prayers that the next 2 weeks will be problem free and she will breeze through surgery on the 5th. Thanks for your thoughts and prayers.

~Terri