Ava~ Hope for Congenital Diaphragmatic Hernia.

Taking on a Challenge!

2012-01-23T20:13:00.001-06:00

Hello Ava friends! She’s been doing better. She seems to be at that age where every little thing is a great big drama!

Many of you that have followed us since, well her birth, would know that she was delivered at Hospital of Pennsylvania and then rolled her across the street to Children’s Hospital of Philadelphia. We were very fortunate that God allowed us to find such a wonderful CDH hospital. The 16 plus hour drive home was well worth the end result of bringing our Sweet Ava home to see her sister’s for the first time when she was 50 days old!

I noticed today that CHOP’s Center for Fetal Diagnosis and Treatment was looking for videos of their patients to celebrate their 16th Birthday. I was honored to be able to send then a small video. Here is an entire video I made of the one small one I sent. Ava is so incredible in it. She sang, “Happy Birthday” to them and blew out the candle. I’m so proud of her!

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Here is a few pictures of today’s recording of the Birthday video, just because…

Ava’s “CDH Miracle” barrette I made for her. Perfect for this video!

Okay here is one I couldn’t resist… an “OUT TAKE!”

I found this very nice photo frame at Hobby Lobby a few months ago. It was clearanced so it was as if God was telling me it was just PERFECT for us. It says, “Life takes Us to Unexpected Places. Love Brings Us Home.” Ava on the Oscillating Ventilator and the very first picture of the girls together at home. Simply Perfect!

One more thing I must share. It was Ava’s turn to bring treats today to Preschool. I saw this neat idea on Pinterest and HAD to do them. It was “Monster Monday” today at Messiah! (Magic Vanilla Pudding and vanilla wafers… yummy!)

Thanks for stopping by and God Bless!

~Terri

I See…

2012-01-21T17:27:00.001-06:00

Hello all. We are fine now but Ava had to make my heart beat a little faster this morning. Lexis had decided to give the dog a bath and she hates blow drying him so I stepped in. I was nearly through when Ava came running in the bathroom holding her eye saying she scratched it with her thumb and could not see out of it. I took a deep breath and set her on the couch. I asked Lexis to get her a cold rag. We put that on it but she kept crying. I began getting concerned when she wouldn’t stop crying. I’ve scratched my cornea before so I know the pain.

I decided to call the doctor. (The one office is open until noon on Saturday.) Luckily it was 11:20 AM. They told us to come right in. We had to help her walk as she couldn’t see. I told her to keep her other eyes closed as well and try to rest them both. We made it to the doctors office. She then stopped crying. I asked her how it felt there and she said a little better. (Pictures are taken from my cell phone.)

Lexis was my helper. I was glad to have her today. Emeline is on a ski trip with the church.

The doctor put some dye in her eye and looked for scratches. He looked but found none. I felt SO much better about the situation then. He thought she may have irritated the lining of the eye but didn’t damage it. Thank the Lord! He said to keep an ‘eye’ on it. She didn’t need an eye patch or any antibiotic drops. We all left smiling. She feels much better. This was the way home.

I’m so glad it was nothing serious. Ava always keeps me guessing and my heart beating… faster than normal. I’m again thinking this may be due to her right hand. The strength is just not there. She is continuing to gain strength, as she is still attending therapy. Since her hand strength is low her hands seem to get in the way. We appreciate all your thoughts and prayers. We are blessed to have such a supportive bunch of followers.

~Terri

Flu took a hike!

2012-01-14T21:52:00.001-06:00

Hello friends! I just wanted to give you a quick Ava update. She is doing much better and by this morning was almost fully back to her happy, skippy, talky, jolly self! I think we are over that small hurdle. Praise God!

Her sisters thought they needed to enjoy the snow today so she was a little disappointed that she had to stay inside. She was so good that around 4:00 I decided that since she seemed to be doing so well that she deserved to go outside in the front and sled down our small hill. Well to say she was happy was an understatement. Smiles and laughs were all anyone could hear on our block.

She was just enjoying herself so much!

Now how awesome to see THAT smile?

My heart is happy tonight. God is good. I came across this verse and thought it fit well,

Psalm 56:3 , 4 “What time I am afraid, I will trust in thee. In God I will praise his word, in God I have put my trust; I will not fear what flesh can do unto me.”

“God we come to you tonight, with grateful hearts, we thank you for Your goodness and Mercy. We praise and thank you for making our daughter better. You know how heavy my heart was with worry. It is so hard with all Ava’s been through to cast her cares on you. Help me everyday to give my children back to you. I’m so glad you choose me to be their Mommy. In Jesus name, Amen.”

Thanks for lifting Ava in prayers everyone!

~Terri

Oh no… not that!

2012-01-13T09:31:00.002-06:00

Hello Ava followers. I’m posting because we need your prayers. Ava woke last night throwing up. She’s never had the flu only abdominal problems ever. We are hoping this is the flu. It is so hard with Ava as we are never for sure. I gave her a Phenergan Suppository and that seemed to help. She was finally able to get back to sleep. I called her preschool this morning and asked if they knew of anyone else that had the flu. She claims they are not aware of others… “Great” was my next thought.

She is feeling a little better this morning and is drinking a little water. So well see how it goes. I called our local doctor and informed her but knowing Ava if she turns worse we will be heading to Iowa City. She always keeps us guessing.

She looks so different from last night. I took a few pictures of her and Emeline in their cute animal hats.

And Emeline and Frankie…

PLEASE keep Ava in your prayers. She’s been doing so well. I just want to hide her all Winter long. There is so much junk going around right now. These are the days I wish I’d never put her in preschool. I’m hoping she can get some rest. Thanks for your love, support and prayers. I’ll try to keep you all posted. Remember, No news is good news.

~Terri (Ava’s Mommy)

Ava in a Commercial?

2012-01-05T12:34:00.001-06:00

Hello Ava friends. Yes you heard right! Ava was in her first commercial. It is for a local Therapy group which she uses three times a weak to gain more right hand strength. She did great. She did a typical session and then they videoed a few minutes of it for a commercial.

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I just got over a very bad sinus cold. It was tough finishing the year and trying to keep away from Ava. Thank goodness Brian was able to be here all weekend long. I’m feeling much better now. We are praying Ava nor the rest of the house get the cold.

Our new year has started off pretty well. Ava happily returned to preschool yesterday after her very long Christmas break. She was thrilled to see all her friends and teachers!

A few pictures of her commercial day. Our Ava is a Star! I can’t wait until the entire commercial comes out. I’ll be sure and post it if I’m able to get the link.

Here is Ava and Cindy.

Thanks for dropping by and checking on Ava. Again we love all the messages! We appreciate the thoughts, love and prayers!

~Terri

Celebrating Jesus

2011-12-28T14:16:00.002-06:00

Hello to all of Ava’s friends and followers out there. I can’t believe that Christmas came and went. A New Year is upon us and it seems I can’t keep up! We had a Blessed Christmas! Ava was pretty excited that Santa left her a Dora Kitchen set! She’s been a very good girl… or so she says!

I’d like to bring up a dilemma we went through recently. One of Ava’s photos (a picture of her very near death in the PICU) was stolen and used by a woman. She was claiming Ava’s picture was her sick son that had died of Cancer. I emailed her and asked her to remove it. I also informed the site where the picture was on. I was so disturbed by this. How in the world could anyone use Ava’s pain and our sorrow for their own bizzare pleasure? I was relieved to learn that the site took the picture down after five hours. Thanks to all my great supporters that helped me get it down. I think there are really disturbed people out there that need a lot of help. Ava’s emotional journey is something I wish we didn’t ever have to go through however I am AWARE of many more families we’ve helped along our way by sharing Ava’s story. It is battles like these that make me a bit sad we have those horrid pictures of Ava for people to steal. I keep telling myself that it all happens for a reason.

So now onto the Christmas pictures and all the Joy we shared!

Ava’s Preschool Present to us! I LOVE this so much!

And all the JOY these three bring…

And Ava doing her Santa impression.

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Ava’s preschool brought to my attention that Ava’s hand strength is very weak. She has a very hard time even holding a pencil. We have a few ideas of why this is happening, one could be that she is just slower (since birth and being born with cdh … her normal muscle strength has been slow) and it takes her a bit longer to master fine motor skills. It may be due to her arm scar from the burn. She will be seeing a doctor for this very soon. We figure any help we can get will benefit Ava. We started her in hand therapy and she loves it. Her therapists name is Cindy and she is very nice. We go three times a week and each time Ava gets excited. She is gaining strength. We pray that it will return fully.
Here she is doing one of the tests.

And her least favorite…

I was shocked this morning when I weighed Ava.. 36.5 pounds. She gained a WHOLE pound! “Yea! Yea!” is all we kept screaming! We love weight gain of any kind… a pound for her is monumental!

I wish on each and every one of Ava’s fans a Healthy and Blessed 2012. More happy times and great strength to come! Thanks for your love, encouragement and prayers!

I’ll leave you with our Christmas Card Photo. We are Blessed to have these three Miracles in our lives! Each year (after Ava) I sign the cards like this, “Sending Miracles from Our Home to Yours!”

~Terri

Christmas Play… “No Turkey for Purkey!”

2011-12-08T20:47:00.002-06:00

Hello Everyone! Ava is all over her cold. Wow was that a tough one but we ended up avoiding the hospital! She’s been doing SUPER. She’s back in school and last night was her Preschool Christmas Musical. We were SO proud of her. She got a little nervous before the play. She asked us if we could hold her hand the entire play. We told her that of all she’s been through in her life this wasn’t scary… but fun! She looked so cute walking in with her friends. She was the Pizza in the musical, “No Turkey for Purkey”. She remembered all the things she was supposed to do.

Here she is with her entire class. She is on the far right.

Here is very end…

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We promised if she did good we’d take her to McDonald’s. She didn’t forget because after the play she came right over and reminded me it was time to go and get her ‘dinner’. She is such a silly girl. She wasn’t interested in the cookies and punch the preschool had going… she wanted her chicken nuggets!
Here’s the treats I made for the snack after the play. They were Christmas Tree Ball lollipop. SO yummy!

Ava was a doll helping me ‘model’ the treats!

I got a few pictures of her after by the gorgeous stain glass windows at Messiah. She just glows as you can see in the pictures. She is growing up!

She’s been wanting to decorate for Christmas. I’ve been so busy with our little business with the girls “Lexis and Emeline Creations”. So finally today I got out a few decorations. She had forgotten about this Santa. She tells me, “Mom this Santa is BAD!” Only Ava!

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Please continue to pray for her health as we go into Winter and the very cold months. She is so excited about Christmas and can hardly wait to visit Santa at the mall. If only we were all kids again! Thanks for dropping by!

~Terri

Breathing Better

2011-11-18T13:29:00.001-06:00

Hello all! She’s doing her ever-so-popular breathing treatments. She does the Albuterol every four hours (even at night if needed.) Then she does a Pulmicort through the nebulizer as well, twice a day. She’s a pro! Oh and YES she is Princess Ariel today as you can see!

I took Ava to the Doctor this morning to make sure her lungs were healing. I always worry a bit more on Fridays because the weekends. She is doing so much better. Doctor says she can now hear her left lung! She still has a cough but it is much more productive. Her stats over night were better as well. She sleeps on a mattress right by our bed. My eyes stare at her monitor much of the night. Her color is coming back!

Last night I did some bonding with Lexis and Emeline. We went to the Midnight showing of “Breaking Dawn”. It was great focusing on just them. Brian took great care of Miss Ava. Her and Daddy had fun too!

Please continue to pray. I believe we are over the biggest hump. We now have to keep her away from others for a week or so. Her doctor thinks that she shouldn’t go back to Preschool until after Thanksgiving break. I thought that was very smart.

Thanks for dropping by and checking on little Ava! God Bless.

~Terri

Waiting it out…

2011-11-16T11:38:00.001-06:00

Hello friends! These last few days have been very hard on Ava. Her lungs have really taken a hit from this cold. Monday night her oxygen levels were running 94-96. (Not horrible but also not Ava.) Her heart rate was also quite high. This made me very worried. She also coughed harder than I’ve ever heard her cough. It didn’t seem to let up. She complained of her lungs hurting. I took her back to the doctor yesterday and we debated putting her in the hospital. She could use a little oxygen to help her lungs heal. This is a hard decision. We know that with her being on steroids her immune system is down. We decided to give her a very strong antibiotic shot called Rocephin. It fights many bad bugs with the respiratory system. I strongly feel the need to stay on top of Ava’s natural body warnings to me. I then took her for an x ray. We learned that she did definitely have Bronchitis. Her left lung showed a few white areas but no pneumonia. Our decision so far has been to wait this out at home. Last night she seemed a bit better. We were finally able to get a few hours of sleep. Her oxygen levels were a tiny bit better and her heart rate had dropped as well. I’m keeping my eye on her and listening to my heart.

Please pray that Ava can kick this at home. We don’t want her to tire out. She is eating and drinking so this is a very positive thing. She has ‘false’ energy from the steroids, so she feels like doing things but we warn her it is not ‘real’ energy and her body MUST rest. We need healing prayers for her lungs. Her new dog is very concerned about her. He sleeps by and with her on the couch during the day. She loves him so much.

Thanks for your messages of support and your prayers. They really are very much appreciated.

Here is Ava and Frankie this morning…

~Terri

Bronchitis

2011-11-14T13:58:00.001-06:00

Hello Ava friends! So you read the title? Yes Ava has bronchitis. We’ve been doing breathing treatments for six days now. Her cough was getting worse so I took her to the doctor this morning. I knew with colder weather comes sickness but wow did that creep up fast. She started her on a heavy dose of antibiotics and steroids along with what we were already doing, Albuterol and Pulmicort treatments. So now we wait and see. Any sickness with Ava puts me on edge as I know how quickly things can go from bad to a whole lot worse. I just have to put my trust in God and know that He’s brought her this far and He can heal her again.

Better news in our family… we rescued a small poodle dog and now he has made a great member of our family. The girls have been wanting a dog for awhile now. The opportunity was given and I decided that Frankie needed our help. We’ve had to retrain him but he is doing pretty good. Last week I took Ava and Frankie down to the train station for a little photo shoot. They both did so good.

And my all time favorite!

I just have to brief you on her Halloween costume. She was Daphne from Scooby Doo. She fit Daphne to a tee! Her second year of going trick or treating was even better than the first! She was overjoyed by her full sack of candy!

She’s still working on this candy!

She is doing great in preschool. I just wish the germs would stay away. I know I can’t protect her from everything, just wished I could! She got her pictures taken at preschool but I just had to take a few she left as she looked so grown up.

I think I’ve caught you all up on Ava’s progress the last month or so. She’s been doing great. She can write her first name. We are working on her last. Please join us in praying for healing with this latest cold. We need her to stay strong and healthy.

Thanks again for all your love and support. God still blesses us richly.

~Terri

"Walk for Wishes"

2011-10-09T17:33:00.001-05:00

Good afternoon Ava followers. It is such a beautiful day here in Iowa. Our family was invited to attend the third annual Burlington "Walk for Wishes" put on by the Iowa Chapter "Make a Wish." We were so excited. Ava was granted a wish through them a few years ago. We decided to wait until she was a little more healthy and a bit older so that she can remember her wish. What a wonderful organization. We met a few other kids there today that had already had their wish granted.

Here's a slideshow of the Walk today.

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You know I had to doll our little "Make a Wish" girl up. I created her shirt, a hair barrette and threw together a matching tutu and Bam we were all ready to go! She was so excited as there was a bounce house and a free ice cream van. She was in awe of it all! She even saw her favorite friend.... Buzz the Bee!

So off we went walking and walking...

She had her very own sign!

This is "Lake Starker" it is so beautiful this time of year.

Ava trying to walk backwards!

We walked with approximately 50 people! Ava walked about a half a mile then we put her in the stroller and walk her the rest. We got a necklace at each lap. We did four laps... one hour and twenty minutes!

Ava and her sign. We are SUPER proud of her. Lexis and Emeline also walked and showed their support.

Here I am with Emeline and Ava.

Ava and Daddy... he never gets a Sunday off so this was a double blessing!

And for all the laps here is Ava's necklaces. She was so happy to finally be done!

After the walk we sat down and ate lunch. Ava loves throwing away everyone's trash. Unfortunately the garbage can was one she wasn't used to. She got her finger stuck in it and cut it. We think it isn't bad enough for stitches however we did have to go home early. We put antibiotic ointment and a band-aid on it. She is prone to finger accidents, not sure why... this is her third finger incident. Two were ER visits. We are happy this one wasn't. She is on pain medicines so she feels a little better. She had to end the walk on a good note huh?

Besides her getting hurt we had a great family day. We thoroughly enjoyed the "Make A Wish" picnic and walk. We can't wait until one day we are off on Ava's wish. I will be asking for donations next year. We will be getting a large team together to walk with us in honor of our little Princess!

Ava is loving preschool and now has many friends. She is learning so much and we can tell her brain is growing and expanding. She can now write her name. We are so happy with her progress. God has been good! Thanks for all your prayers. I know they come from so many of her loyal followers. We thank you!

Added update: We had to take Ava to the ER. Her finger did need attention. The doctor was very nice and decided against stitches but put steri strips on to keep her finger together. Poor pumpkin. She is now sleeping peacefully. :)

~Terri

Happy 5th Birthday Ava!

2011-08-31T22:38:00.001-05:00

Hello Ava fans! I first want to say, “Thank You” to all our devoted followers. The blog has hit over 100,000 views since October 2008. It is with your love and support I continue to write and share Ava’s story. I also wanted to mention her carepage http://www.carepages.com/carepages/AvaHelmick (this was my first Ava blog) has over 3000 visitors. (This means 3000 people have read Ava’s carepage.) She has almost 6300 messages of love, encouragement and strength coming straight from you all. I’m floored by your love and support. So I say again, “THANK YOU”. I hope Ava inspires you. I’d be honored if you’d leave a brief message of how you found out about Ava and when you started following her blog or carepage. I’ve been sharing our CDH story, Ava’s entire life. I never knew that keeping a journal would turn out to be so big for us.

If you’d like to read Ava’s entire story you can find it here on the blog. Just scroll to the top and under the title you can click on “Ava’s Story”. If you are a carepage follower you can read it here. http://cdhkids.blogspot.com/2011/08/featured-child-ava-elizabeth.html I started a blog for CDH parents. If you are a CDH Mom or Dad and you want to share your child’s story please send me a message. I’d love to add your story to the blog in our “Featured CDH Child” section.

SO yep Ava turned 5 today. I made a very short video of the highlights of today. Hope you enjoy!

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I did get a little emotional today. I thought to myself, “Things could be a lot different right now.” I always go back through and watch her birthday tribute videos I’ve created. http://cdhawarenessvideos.blogspot.com/ I still can’t believe she survived this nasty birth defect. She was brought into our lives to make us stronger. She seems to teach me something new everyday. I’ll say this again, “I’m proud to be her Mommy!”

Enough talk here is some pictures of Ava’s day…

Ava and Mommy

Her special birthday bow and dress I made especially for her big day!

She really is quite the little lady. Her smile lights up the entire room.

Her excitement is contagious and makes you laugh! She asked who used the funnies in the newspaper to wrap her presents. She thought that was so funny!

Had to give you one more shot of her and her Scooby Cake. Brian’s Sister made this for Ava. “Thanks again Marsha for again making her exactly what her heart wanted!”

Oh yes and if you are wondering… Preschool is going great. She loves everything about that place. I’m thrilled she has made many new friends. She is a social butterfly. She has this energy that people are drawn to.

Also another update, my Sister Rachel’s fiancee Doug is doing well with his kidney transplant. Thanks for the prayers!

Okay signing off. We love Ava’s supporters. Keep reading and praying for our little girl and I promise God will send a special blessing your way.

~Terri

Ava’s 1st Day of Preschool!

2011-08-29T13:39:00.001-05:00

I made Ava this special bag so she’d feel my love! Also made the headband and capri pants… just because!

Hello friends! Today was Ava’s 1st day of Preschool. She did awesome. I’ve been telling her for a month now how much fun she is going to have and how many friends she’s going to make. It was true!

As we got closer to her school this morning I looked back at Ava. She was deep in thought. We got out of the car and we went to the play ground as we were a tad bit early. Suddenly the bell ran and we headed for the “blue” preschool door. I watched as parents were taking their children in… many had stepped inside. She seemed confident as she got in line to receive her name tag.

Here as she was… her FIRST day of Preschool! She has accomplished SO much.

Ava waiting patient to put her bag away in her “cubbie”.

Hanging up her coat. She insisted she needed a jacket. It was about 70 degrees here in Iowa this morning!

I’m so proud of Ava. As soon as she got her things organized I knew it was time to say goodbye. I looked around as one boy was being comforted by his Mother. He was crying and didn’t want her to leave. I was wondering to myself if he would scare Ava and make her think of us parting and be sad. Somehow she read my mind. I bent down and gave her a quick hug. She looked me straight in the eye. It was as if time stood still… “Have fun my sweet Ava and Mommy will be back soon” I said. She pulled me close and gave me a quick kiss on the lips. Then said something that made me leaving her all okay… “I love you Mommy.” WOW it was exactly what I needed. I think she knew it was going to be tougher on me than on her. She was ready. This was the perfect timing!

I’d been feeling kind of anxious the last few days. She’s been through so much and this Mommy wants to protect her forever. I know that it is time for her to fly! I know God gave me a peace today that I’ve felt through out her CDH journey. It is a comfort that only He can give.

Picking her up was another special treat. She ran right into my arms. She didn’t stop talking about how much fun she’d had. AND she is now ‘okay’ with boys :) This was something new we had to discuss with her when we went to Open House on Friday. She didn’t know if she really wanted to be ‘friends’ with boys in her class. She excitedly told me that she only played with the boys as the girls were not much fun. Yes I have a pretty silly outgoing girl on my hands!

Here’s a few pictures of Open House on Friday.

She LOVED their “Science Center”.

Here is Ava with one of her teachers… “MOON SAND” is Ava’s favorite!

Ava washing her hands… something this preschool is very known for, keeping germs down!

Here is a glimpse into Messiah Preschool.

I have a great feeling about this School. Please keep the prayers going for Ava. She needs to continue to stay healthy. This is a HUGE step for her and me. We know that with exposing Ava to germs increases the risks of potential problems. However she is ready and we know we with your Prayers and God’s help He will continue to keep her protected.

What a GREAT day! Thanks for stopping by!

~Terri

Spine Check-up

2011-08-15T16:41:00.001-05:00

Good Afternoon everyone. As I mentioned the other day Ava had an appointment with Dr. Weinstein at Iowa Children’s Hospital. He is an Orthopedic doctor. This was our first meeting with him. What a wonderful, loving doctor he truly is! It is neat to see a doctor that LOVES his job. He introduced himself to Ava and I could tell instantly she trusted him.

When we first came in Ava went right back for a full Spine x-ray. Her last Spinal check was done at Children’s Hospital of Philadelphia while we were there for her two year CDH appointment and the CHOP fetal reunion in June 2008. She was 22 months old. I had not noticed any problems and her surgeon here in Iowa thought her Spine looked fine. However I like to be very sure. Many times in CDH kids they can get Scoliosis So with that warning I keep my ears, eyes and anything else alerted!

Dr. Weinstein made Ava do several bends and motions with her back. He then told me that her left hip is slightly lower than her right. You can see this in the x-ray below, if you look real close. This makes her right leg a tiny bit shorter. He is not concerned at this point he just wants to keep an eye on it. It isn’t enough of a difference to wear a shoe insert or anything. He wants her to see her in a year. He says overall her spine looks healthy. He sees no scoliosis! VERY good news for this Mama to hear!

Here is her X-rays of today. The first one is the frontal. I’m just noticing how GREAT her diaphragm looks on the left side. Also how big her lung is!!! And as you can see her heart is still a little shifted to the right as it was at birth.

Here is her side view. Again this makes me so happy to see things in their correct spots!

And here is a few pictures I took of her getting the X-rays. She immediately went and climbed up on the table. She didn’t understand that she could actually stand for an x-ray. Normally she lays. She listened to the techs very closely and did exactly as they asked. They all thought she was a doll.

“Head straight ahead Ava.”

She is getting so tall. They measured her today and she was almost 45 inches tall! Her weight 34.4 pounds! :)

Then you know the drill you wait to see if the x-rays are fine… and they were!

My oh My has she grown. Her sister’s were also at the appointment. They were only there for the “Olive Garden” afterwards!

And a few more extra pictures…

And we HAD to see the Hawkeye right? “Go Iowa Hawks!”

Ava couldn’t have ALL the fun so Lexis stepped in to help! Silly girls!

As we drove to eat I noticed I was driving the same road I often drove when I needed a short break from the PICU when Ava was very sick. I instantly felt so blessed and thanked God that second for he had done and is doing to keep Ava healthy. I rolled all the windows down in the Suburban and cranked up Lady Gaga’s song “Edge of Glory” (Ava’s favorite song) and we let the wind blow our hair. What a gorgeous day it was!No that is not probably the best song to thank God to… yet I know she is on the edge of Glory and is hanging on to the moment with us all. God has been good to us. We give Him all the Glory and Praise. He is the Healer!

I’d like to add a prayer request if I could. My Sister’s fiance, Doug is in Iowa City Hospitals right now. He just got his 4th kidney transplant today. Please band together with us and pray that he does well and no complications arise. Our family loves this man and he is the strongest person (besides) Ava I know. He was born with “Prune belly stndrome.” Here is a picture of him and my sister. Keep them in your thoughts and prayers as they have a long road ahead of them.

If you have not I encourage you to please thank God right now for all he has given you. Thanks again for keeping us close. We thank and love all of Ava’s blog and carepage followers!

~Terri

Sisters

2011-08-09T18:50:00.001-05:00

WOW has it really been a month and a half since my last post? Well we are enjoying the Summer. We are trying to stay cool. Ava has been staying healthy. I’m so proud of her. She loves swimming and slides!

Today was just beautiful here in Iowa so I decided it was time for “Sister Pictures”. And did I hit the jack-pot! I’m in love with these pictures :)

A few individuals…

Ava only lasts for about 3 pictures and then she is finished. They all did great today.

She goes for an orthopedic check-up this Monday. I want to be certain her spine is growing and not curving too much. I am still quite observant to her medical needs as a CDH child. I MUST be!

Ava will be 5 this month. My mind is thrilled she is doing so well. Five years ago today we were at the New Jersey Ronal McDonald House waiting her arrival. Her future was so uncertain… today we see SO much life in her.

I’ll leave you with a few more pictures of Ava today.

I hold onto all my beautiful daughter’s and thank God daily they are mine. I’m still very involved in congenital diaphragmatic hernia and it’s research. I meet by email and face book new expectant Moms and Dads daily. This week has been hard as four CDH babies have passed away from this birth defect. It definitely hits home each time I must be reminded of how truly blessed we are to have Ava with us today. I feel for the families that don’t take their children home. I don’t have the answers. I wish I did. I do know that I was given Ava to help other’s get through this birth defect. I strongly sense a need for answers and for healing. Please say a prayer for the families that have lost their most precious gift… their babies.

Thanks for stopping by and God Bless each and every one of you tonight!

~Terri

Yearly CDH Check-up

2011-06-23T16:52:00.001-05:00

Hello everyone. Ava’s check-up was today. We woke up very early and traveled to the hospital. It is an hour and fifteen minutes from our home. When we got there I explained that she was going to have a test but that it wouldn’t hurt. The lady gave her the contrast drink for the CT scan and she was very unsure of whether she wanted to even try it. Brian told her was okay and after a few minutes she took a sip. “Pretty Good.” was her reply. (Pictures are taken from my cell. I realized when we got there I left my memory card at home…)

She drank it up within minutes. She did great with the CT. It is like she’s done it a million times. Sad thing is she has had too many and just knows!

A little apprehensive but she still enjoys the ride.

So then we had to go to the appointment with Dr. Shilyansky. We waited for about an hour in the waiting room. Thanks goodness they had Toy Story 3 playing!

We had to burn an hour so we went up to see the Children’s Hospital museum. It has some pretty cool things in it.

This was us discovering another cool place in the hospital. This was a secluded part of the hospital that had a ton of windows and many stairs… very pretty.

Here is the toy she picked out for doing the CT scan. She loves Horses!

She sees the wipes and can’t help herself! So I’ve taught her right.

Her NP Josh and Dr. Shilyansky was very impressed by how much she has grown. She weighs 33 pounds. She is in the 15% for her weight and 87% for her height. The CT scan results came back and they found nothing abnormal. He showed us her patch (on the CT) and how it looked very secure and right where it is supposed to be. They were so pleased and amazed at her progress.

It makes me feels so relieved. ALL she has been through and all she’s overcome. I’m super proud of her.

Here is Ava just 2 years ago. So much good has happened. I’m thrilled to be done with her central line and her g tube. She is truly a Miracle!

Many times we take our health for granted… If you are healthy this second, cherish it! God is good! Thanks for your continued support, love and prayers!

I’ll leave you with a picture I took of her yesterday at the Zoo. She’s our Butterfly!

~Terri

Lexis and Emeline (Ava's Sister's) Blog Giveaway

2011-06-20T10:57:00.001-05:00

I thought some of Ava's loyal supporters would love a chance to get in this Giveaway. The girls are working so hard on hair candy! Hope everyone is doing well. Ava is sleeping in this morning! (That never happens!)

Lexis and Emeline Creations Blog- http://lexisandemelinecreations.blogspot.com/

Welcome! What a great week for a Giveaway. We hit 200 fans last night. We are thrilled. Here is what we need you to complete for your entry to count.

One Winner will win both... {Roses Galore} and {Blue Butterfly}!

{Roses Galore}

{Blue Butterfly}

1. You MUST 'like' Lexis and Emeline Creations facebook page to enter.

http://www.facebook.com/lexisandemelinecreations#!/lexisandemelinecreations
2. You MUST fill out this form. (We do the form to protect your privacy. No one sees your information but Lexis and Emeline Creations.)

*The Giveaway ends Midnight (Central time) on Monday June 27, 2011.

*Only available to US residents.

*Random.org will select the Winner.

*I will contact the winner by email. If winner doesn't respond within 48 hours, I will draw another winner.

*Facebook is not involved in this giveaway in anyway.
Thanks everyone!

~Terri Helmick

Healing

2011-06-19T17:50:00.001-05:00

Hello everyone! I just want to say how AMAZING you all are. I can always count on Ava's readers to help me out. I won't go into much detail but I'd ask you all to go "like" a certain page on facebook a few days ago to win a free tutu and MY GOODNESS was I surprised at the wonderful response! I actually gave, with your help, that page over 140 fans! So I was shocked when she didn't choose me... and not only didn't she choose me but she became very rude as well. In the meantime I had several of you offer to buy and make Ava one yourself. I was so humbled. God always keep me in check, letting me know that although bad things happen there is still wonderful, caring, loving people in this world and we should never feel discouraged or down. I was really feeling so loved.

However the crafty side in me took the challenge and I decided to make Ava one myself. It was quite easy and very fun. The Girls and I have a Shop on facebook. We sell hair things, hats, and now tutus! If you have not stopped by please check us out. Lexis and Emeline Creations- http://www.facebook.com/lexisandemelinecreations. We also have a blog… http://lexisandemelinecreations.blogspot.com/

Here is Ava in her Patriotic GLITTER Tutu! Made with LOVE by Mommy.

And this picture was taken at Snake Alley. One of the most crooked streets in the United States. We love this street.

For all you Dad's out there HAPPY FATHER'S Day!

We went to a wedding last weekend so I took the opportunity to take some family pictures. You know me I just can't get too many! :)

A few of the Girls around Lake Starker.

Her scraps and bruises are all healing nicely... I asked her the other day how she was going to keep herself from getting hurt. She smiles and replies, "I can't Mommy!"

This Thursday we take Ava for her yearly check-up with her surgeon, Dr. Shilyanski. She is pretty excited about seeing him again and showing him how great she is doing. She will have a CT scan to check her diaphragm and how it is holding up. This time she has no g tube so she will have to drink the dye. Not sure how she will do but praying all goes well for this test. I still marvel at how well she is doing. God has been so good to us!

Thanks for visiting and thanks again for all your support, prayers and love. I love hearing that you still continue to keep our Ava in your prayers. This means the WORLD to Brian and I.

~Terri

Banged up.

2011-06-15T20:21:00.003-05:00

Hello Ava fans. A few things going on in Ava’s world right now. She has had so many small accidents this last week. It started with the cut finger, then she got hurt riding her bike. She fell and scratched up her back pretty good. Then today she was trying to go too fast and skinned her knee up really good. She has no meat on her bones so each accident is severe, it seems.

Here is her finger. It is doing much better. Stitches will come out in a few days.

Here is her lower back from the bike ride fall.

Her knee we bandaged quickly so no pictures of that. Please say a prayer she heals and no infection for Miss Ava.
Thanks for stopping by.

~Terri Helmick

Trip to the ER... nothing major (sigh)

2011-06-09T22:24:00.000-05:00

Hello everyone! Ava gave us another scare tonight. She seems to keep us on our toes CONSTANTLY... no fun for us. We were at my parents house and Ava came out of the bathroom holding her finger. She was crying. I saw blood. I got a little queezy. It was deep so to the ER we went. I called Brian at work and he came and met us there. (These are the pictures from my phone.)

Before stitches...

After Stitches...

Ava and Mommy.

All done!

Good news is after the xray we learned, it was not broken. Two stitches fixed the cut. She did great. I don't know where she gets her strength.

We just got home and Ava is doing much better. We need to keep her finger covered and dry for 2-3 god days then covered for 7. She can get the stitches removed in 7-10 days. She is happy about all the stickers she got... silly girl!

Talk about drama... The ER doctor was the same one that fixed her index finger when she nearly took it off. As we were leaving he says, "Two down eight to go!" We just laughed. Let's hope there is no next time.

Please pray for our little burger and for total healing. Thanks for all your love and support.

~Terri

Planting Flowers

2011-05-24T13:35:00.004-05:00

Hello Ava followers! Just a bit of news… Ava was tested by our local AEA and we were thrilled to learn that she is testing within the normal ranges for her age. I’m just blown away by the progress she is making. Her speech teacher thinks Ava is doing “leaps and bounds” of what she was doing just one year ago. Drum roll… Brian and I are really thinking strongly about sending her to preschool in the fall. She actually could go to kindergarten but we have no interest in sending her. She is just not ready for that yet. So since she has never been with children her own age we thought a year of preschool will be just what she needs. I promised her that if she kept her weight up and stayed healthy that I’d let her go to preschool. She is SO excited. I spoke with the preschool administrator and told her about Ava’s health history. She seems to think Ava will be just fine. I will always worry about germs. I will always be overly concerned for her safety and well being. However I know it is time for her to spread her wing and fly! AND as I say this I must take a big sigh knowing all she’s been through. When the other two girls went to preschool they learned this song called, “Oh what a Miracle!” It is about knowing they are a Miracle and loving life. Can you imagine the tears I’ll have if Ava learns this song? God is SO good!

SO Ava is doing SUPER and I thought we’d share with you one of Ava’s favorite things. We found out she LOVES to plant. Yesterday she helped my Dad with his garden. They planted onions and cucumbers. She was not afraid to dig right in and help. So this morning we decided to plant some Petunias in my flower box. Ava was in Heaven planting and watering her flowers!

Oh what a happy Girl Ava is… she loves life and we never forget just how lucky we are to have her with us. Another one of her loves is bike riding! She has a bike that is attached to mine so we can all enjoy family bike time. We go almost every night. Ava’s all time favorite thing… going to the “Ice-cream shop”. She never tires of good ole’ Dairy Queen!

Well thanks again for dropping by. We appreciate your love, support and all the wonderful prayers we get from our AMAZING Blog friends!

~Terri

A Day at the Park.

2011-05-04T15:06:00.003-05:00

Hello Ava friends! Ava is continuing to do extremely well. I dolled Ava up the other day and for a good “five” minutes. She was ALL mine for some Gorgeous photos.

This is one of my favorite gifts ever given to me. My friend (We met through Ava, over the internet) Teresa gave me this bracelet. Each time Ava had a procedure or test I wore this. Each day they told us bad new…. then good news I wore this. It says, “Expect Miracles”. I seriously think God sent this to me for added Peace and Protection over Ava. So I grabbed it and got a few pictures with Ava and my bracelet. (Thanks again Teresa!)

She is into everything these days. She asks me almost everyday if we can go to the park. Most times my answer is, “Ava it is still too cold.” Well not a few days ago. I did have to take advantage of the PERFECT day and get some really good photos as well.

I just have to warn you she looks SO grown up and SO tall in these pictures.

Oh how she LOVES to smell the flowers!

Okay done with “gorgeous had to have” photos. Here is serious fun at the park pictures! She is a huge fan of the slides!

And we met some friends… Ava loves to meet new children. I was chatting with this little boys grandfather. This is little guy is adopted. He has seizures every so often. Ava was just intrigued!

Can she do it? Yes she can!

She tried to come down and kind-a got stuck.

AND with Ava it is “All about the Climb”!

“I sought he LORD, and He heard me, And delivered me from all my fears.” ~Psalms 34:4
For all you Congenital Diaphragmatic Hernia Parents that follow our blog or care page, Here is an awesome blog I started called “Raising Diaphragmatic Hernia Children”. It explains all the problems our children face. There will be a “featured” child once a week. Our very first child is Claire. If you have not read her journey please do. I want people to “Be Inspired” by these wonderful example of God’s Greatest Blessings and Miracles!

Thanks for dropping by. Oh before I forget… Little Isaiah is now HOME. He is doing So well. Thanks for all your prayers for this family and for Ava. We truly appreciate all your love!

~Terri”

Easter Fun

2011-04-24T13:14:00.001-05:00

Hello Ava followers! HAPPY EASTER! Wow what a difference two years can make! Ava got discharged two years ago today on Easter Sunday. Her central line was removed due to a very high fever. She was so happy to be going home. We celebrated with an Easter egg hunt at my parents, then took her home for rest and relaxation. The surgeries were not over, nor was she fixed. She would have a lot more to go but WOW… She’s come SO far! We are thanking God today for His love and understanding and for Ava’s continued health.

Here she is two year ago.

I am copying this from one of my previous posts from two years ago. As you know when you are amidst a “storm” your Faith grows and grows. How GREAT is our God? To me is is EVERYTHING. Today is such a great day as I remember how Jesus died on the Cross for me. He was crucified so that I may live for eternity with Him. What an AWESOME gift. I’m so thankful for Him and His Miracles!

I have learned by this very rocky road that none of us are ever in control of the circumstance. We may think we are but ultimately God knows what is to come. It is a choice we must make to give up the earthly control and hand God all the broken pieces and say, “Here you are God I can’t fix this and I give it to you…do not my will by Yours.” My friends if you have ever done this in your life and truly meant it, I suspect there may be tears in your eyes right now. Oh is it ever hard to do. To give it to Jesus. But I am telling you he knows, He cares and He will bless you for it. Ava is one amazing little girl.

What a great Easter morning it is here in Iowa. Ava was SO excited about Easter. We visited the Easter bunny at the mall this week. She was a little nervous but as we rounded the corner she took off as soon as he was in view! She opened the small gate and climbed up on his lap with no hesitation whatsoever. She proudly sat on his lap. In fact we could barely get her to leave him… As were going to leave she says, “Mommy I miss the Easter bunny already.” I’m telling you this little one has a heart of gold.

We colored Eggs a few days ago. The girls were so excited to create their own styles. Ava was just happy to add color to them!

Make an on-line slide show at www.OneTrueMedia.com

We also for the VERY first year let Ava go to a public Easter egg hunt. I know I heard the gasp through the computer screen. :) They were both outdoor and it was a gorgeous day here in Iowa. She was VERY nervous. (Remember Ava has never been around that many children.) We explained that she needed to pick up the eggs herself. What does Ava do? She cries! So Emeline helped her get some eggs. The tears were gone when she saw Buzz the Bee our local baseball mascot. There was 15,000 eggs! I think she got about 20 eggs.

Emeline took this picture right before the hunt. You can see the fear in her eyes, through that smile.

BUZZ and Ava.

Not so sure about this…

Here is my precious babies this morning. Yes they will always be my babies. :)

AND the HUNT in our backyard.

Photo and video editing at www.OneTrueMedia.com

Ava loved opening her eggs and discovering the candy inside. As a Mother this is one of my favorite days. How grateful I am feeling today!

Photo and video editing at www.OneTrueMedia.com

AND my favorite one is THIS next one!

I did give the website a “mini” make over. It is a little easier to find things now as they are identified at the top. Feel free to check it out. You can click on the “Home”, “What is CDH?”, “Ava’s Story”, “Hope”, “Statistics”, “Ava’s Walk”, “Contact me” and “More”. If you are a carepage follower and have never been to Ava’s blog site please drop by sometime. (http://avaslifewithcdh.blogspot.com)

Also remember I LOVE hearing from my readers. We love the comments so keep the comments and prayers coming!

Have a HAPPY Easter everyone! I hope you all have a wonderful day with family and friends. God Bless!

~Terri (Brian, Lexis, Emeline and Ava)

Ava tells All!

2011-04-13T20:57:00.006-05:00

Hello Ava fans. Had to show you all this. She is getting so much better at talking. I could barely keep her attention for the short time the video lasted! She's always busy with something!

And she tells MORE...

Make video montages at www.OneTrueMedia.com

I also wanted to let you know that Isaiah the little guy that has cdh like Ava was repaired last Friday and was extubated today. He is sailing through all of this at a very rapid pace. He is the first cdh baby I've known to do SO well. Here is some pictures I took of him on Friday. To read more about Isaiah you can visit, http://isaiahsfight.blogspot.com .

Hope you all are happy and healthy. I am lovin' all this Spring weather. Here are a few pictures of my Mother's garden this last Sunday. I just love spring flowers!

And the girls loved seeing the Horses. They can't get enough of them. We were all out of carrots so they tried to fed them celery. Huh the horses didn't care for celery.

Thanks for stopping by and for the continued prayers. God is GOOD!

~Terri

Beautiful Day and Prayers for Isaiah.

2011-04-03T16:20:00.002-05:00

Hello Ava followers Ava is doing SUPER. She is over her cold and finally has no more coughing. We enjoyed the day outside all day today.

I just love this little girl!

AND this was a site that we came accross today. Ava calls them "Snacks" These were all over my parents yard. I spent a few hours removing large roaks from their stream. It was clogging it up and the water wasn't able to run freely. It felt awesome outside and it was great to feel the warm sunshine. Is Spring really here?

I often get emails and messages from the blog. A few months back I got an email from a woman that just found out her baby had Congenital Diaphragmatic Hernia. (Same defect as Ava.) She was distraught and I told her to keep the faith and hold on to hope. Well surprisingly within a few emails we discovered we both lived in Iowa. I offered to be there at the delivery. She doesn't have much family. She was thrilled. Yesterday she went into labor and at 6:14 pm I saw this little man be born. I was also taking some pictures for her. There is a story being told in these pictures.

Then two hours later we saw him in the NICU. He was actually doing very well. Which typically these babies will have what they call a "honey-moon" stage. This can last about 24-48 hours. Then the pulminary hypertention shows it's ugly head. The baby has a hard time controling it's blood pressure due to the heart pumping rapidly and not alowing the proper blood flow to the lungs. This is why so babies die from the CDH. So here he is with his Mommy seeing him for the very first time.

Please say a prayer for Baby Isaiah and his Mother Angel. They both have very tough days ahead of them. I started a blog for her as well. Isaiah's Fight Pray! Pray! Pray! Thanks again for all your love and support!

~Terri

Congenital Diaphragmatic Hernia Month.

2011-03-31T10:07:00.001-05:00

Since this is Congenital Diaphragmatic Hernia Awareness Month I'm decided to post a picture a day showing Ava's CDH journey.

WARNING: SOME PICTURES MAY BE DISTURBING!

Ava at 30 minutes old. The ventilator is helping her breath. She didn’t take even one breath on her own.

On Ava’s second day of life her little body started doing these hick up like contractions. She was hooked up to a seizure machine to check for abnormal brain activity. We learned her brain was just fine.

Pulmonary hypertension strikes these babies and it is SO difficult to control. Here is Ava at 9 days old. Her Hypertension was severe and she had to be on the Oscillating Ventilator and Nitric Oxide gas. This machine shook her entire body.

Pulmonary hypertension begins when tiny arteries in your lungs, called pulmonary arteries, and capillaries become narrowed, blocked or destroyed. This makes it harder for blood to flow through your lungs, which raises pressure within the arteries in your lungs. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and eventually fail completely.

Ava right before her surgery. Dr. Adzick made an horizontal 4 inch incision on her left side under her rib cage. Her intestines, spleen, and part of her liver were take out of her left lung area and placed in their proper places in her belly. He then placed a Gortex patch to simulate a diaphragm. Surgery took two and a half hours. All was done in her NICU bed.

While our little newborn fought so hard at birth, we took the opportunity to be joyful over the normal, father and daughter similarities of their hands. "Find Joy in the Moment, no matter if it is hard."

Ava was 18 days old and still on the ventilator. Daddy was always close by watching over her.

This was a wonderful day. I held my baby for the VERY FIRST time! She was 18 days old. We had to be very careful as she was STILL on the ventilator. Brian thought it was too soon but Taryn our nurse was quite sure Ava was ready. The emotions were quite overwhelming!

Brian held Ava for the first time at 22 days old. He was very nervous. She loved it! THAT was the start of her being Daddy's Little girl!

One of the very first time we saw Ava's eyes. What a Joyful day!

We came in to the sun shining in our our baby this day. She was still on the ventilator but was wide away. Doctor told us the real healing had finally begun and she was over the big hump. Praise God!

This birth defect played a large roll in our other children's lives as well. Lexis and Emeline had to be away from Brian and I for three months. It was SO tough. We were in Philly fighting for Ava's life while they were in Iowa with family. They sure are strong girls :)

Ava was on the ventilator for 29 days. The day she was extubated she was showing ALL the right signs that she was fully ready. My exact words and prayers at the time they took it out. "I believe. I believe. I believe." I knew God was there helping her. The VERY next day she was also taken off oxygen. She didn't need it! How GREAT is God?

After Ava came off the ventilator she had difficulties sucking and swallowing, thus causing feeding issues. She tried SO hard. Her favorite thing to do was snuggle with me after eating.

The Ronald McDonald House was our Home away from Home. We would stay here for 4 months. We met so many wonderful families along the way. Thank God for the RMH of Southern New Jersey.

Ava getting her very first breast milk bottle. The feeding battle just beginning...

She hated the scale. You can see here her repair scar. What a strong willed girl she is!

My precious looking great but still battling feeding issues at Children's Hospital of Philadelphia at 37 days old.

Removing the PICC line was a great day. However the other IV's took over... just a little longer Ava.

Brian and I had to take several class in order to bring Ava home. We had to take CPR and a NG feeding tube class on how to put it in her nose and take it out. We had to take over her medicines. Going home meant lots of hard work for Mommy and Daddy. We loved the challenge!

Ava had to do the car seat test before we could leave CHOP. Funny thing was our trip home was 16 hours. I believe she passed it after 3 hours. THAT was a LONG drive home.

Dr. Adzick, Ava's surgeon from Children's Hospital of Philadelphia stops by her NICU bed to tell her good bye. We couldn't believe we were FINALLY after 47 days going home.

We left CHOP on October 16, 2006. We were finally (after 47 days) bringing our newborn home. The girls were SO excited. We would take the trip home in two days. We had a full car and GRATEFUL hearts. What a Miracle we had been given!

FINALLY we were home with Lexis, Emeline and Ava. They were so happy to see us. It was very hard to hold back the tears. This was the first time meeting their baby sister. We had been away from them for 3 LONG months. The Joy we felt....

She has delays once being home. She didn’t crawl until 8 months She didn’t walk until 15 month. She loved being home and she wasn’t afraid of anything! This is one of my FAVORITE pictures of her taken at 8 months old.

Ava did very well after discharge from the NICU. Then when she was 25 months our lives came crashing down yet again. On October 3, 2008 Ava became deathly ill. I saw it in her eyes. I took her to the doctor 3 times that day and no one listened to me. Ava's patch had failed and she was again hanging onto life. She was life flight to a bigger hospital. A 7 hour emergency surgery began to save her.

The Gortex patch that saved Ava at birth had somehow gotten digested in her small bowel causing not only for her to reherniate but to cause a TOTAL bowel obstruction. After the 7 hour emergency surgery. Ava's insides got infected causing her belly to swell twice it's size. I'm STILL amazed that she is alive today.

About a week after her emergency surgery her bowels became badly infected. Her stomach had to be opened, kept open and drained. (Her stomach would remain open for 4 months.) Her body swelled to 3 times her size. She fought so hard. Almost impossible to see your child this way.

Ava was finally discharged from the hospital after 47 days. She came home with an open abdomen and central line. I became Ava nurse.

Ava went through 6 major abdominal surgeries and 7 minor surgeries. She a fighter in every sense of the word. I find my strength from her. Oh how God has blessed us.

Ava's CDH has brought her many things. It has changed her. She is a very thankful, polite little girl who LOVES life. She enjoys to play with her sisters and be with her family. CDH is only a small part of our little girl. Her strength is AWE inspiring to all who meet her. W...e love you Ava!

We are so lucky Ava survived all her CDH battles. We learn to savor life and appreciate EVERY day that is given to us. This is a good reminder to all of us.

I look back on her CDH Journey and Marvel at How Great God has been to us. Many are not as fortunate. The technology has gotten better but still only half of all babies born with this birth defect survive.

On to the UPDATE… Ava is MUCH better. This picture was taken this morning.

She is still coughing but that is getting less and less. Her appetite is back to NORMAL! I’d say she kick RSV but all by herself! However she gave it to Lexis. Her sister suffers from Bronchial Spasms so she now is coughing nonstop. I took Lex to the doctor and she has an ear and sinus infection. This morning Lexis went to kiss Ava goodbye for school. Ava pushed her away saying, “I can’t get your cold sissy.” We laughed. Silly girl she gave the cold to her!

Thanks for following Ava’s blog and carepage. We love our Ava support and prayer team so much! Your thoughts and prayers have helped so much!

~Terri

Slow and Steady Wins the Race.

2011-03-27T12:18:00.001-05:00

Hello Ava Followers. She is still finding her way through this nasty RSV virus. It has really hit her hard. I’m grateful that it never went to her lungs. (So far) She is still coughing quite a bit. It has wiped her appetite to nowhere land. It is so tough on me to see her weight drop. She’s lost 3 pounds now. Only last night did she show interest in food. We were so excited. The girls were asking her, “Do you want this? Do you want that?” They care so much for her.

When we hold her you can feel her bones easily now. I cut back on some of her liquid medicines. It did not do much but cause her to be drowsy and distant. Her nose is still running a lot. Her mucus is getting much more thick. I’m thinking she may have developed a sinus infection as the snot is turning a darker color. I’ve got her on Children’s Musinex. We are still doing every four hour breathing treatments.

These pictures are from a few days ago.

Her eyes still very sad and sick. I can always tell how she is feeling just by looking in her eyes.

The girls were on the couch this morning so naturally I grabbed for the camera. Silly girls!

Huh, How do the “Helmick Girls” relax? Bubble Baths and Manicures are the pick! Glammed ourselves out this afternoon.

The final product!

And she’s back to resting…

Thanks for all your messages. We appreciate each and every one of you. We’ve been blessed to have so many love and support our family. God is healing Ava and she will be back to her good ole’ self in no time at all.

~Terri

Ava has RSV.

2011-03-24T14:33:00.002-05:00

Hello all! Ava’s been down with a TON of coughing, sneezing and a leaky nose. I’ve never treated a “cold” that did not improve with medicine. I’ve been doing breathing treatments consisting of Pulmicort (Steroid) and Albuterol for five days now. She has not been sleeping as her cough is SO over powering! I did the Dimetapp as much as I could with no help in site. This morning I asked her what she wanted to do. She said she wanted to go to the Doctor. (As you know, I HATE taking her to the doctor as that place is CRAWLING with germs. I cringe each time my mind has to go there.) I have a stethoscope here and I knew her lungs were clear. She’s been very warm but with no “actual” fever. Early this morning I hooked her up to her Pulse Oximeter. She was less than she usually is…running 95-96 but still way on normal levels. Meaning she was getting plenty of oxygen to her body.

I was very concerned with how her eyes looked so I decided she was probably right. We geared her up with a full face mask and brought along tissues, disinfectant wipes, portable DVD player and Scooby Movie. The funny thing was my Father has been very sick with a cough as well and he was in the waiting room. He instantly noticed how bad her eyes looked, even with the mask on. She lite up when she saw her grandpa…even with the cold. Strange they both got a cold and were not around each other. As we waited for the doctor I got out the ever so long, “Ava list”. This is all her surgeries, medicines and allergies. I normally get quite shocking looks when doctors read through all of it. Finally the doctor comes in. He thought her ears looked red but not infected. Her throat was red but didn’t look infected. And her lungs sounded clear. He asked to run an RSV test and an Influenza A. I agreed thinking I’m sure she has neither. WAS I WRONG! As we waited for the test we watched Scooby Doo and the Loch ness monster. After only a few minutes Ava fell fast asleep on my lap. She is just been zapped of her energy. Finally the doctor returned and said that she had tested “positive” for RSV. I dreaded those words. I’d prayed for so many years that it would never hit Ava. She had gotten the RSV shot for the first year of her life and then some. My heart just sank. For a child with fragile lungs THIS is NOT a good thing. How could this have happened? He gave me a print out. He explained that he thought she was handling this quite well and that I was doing all the right things. He scolded me for not getting her the flu shot this year. (I can’t explain why I didn’t. However this would not have stopped her from getting RSV) So I decided to go ahead and get one right along with Ava today. Not so fun but now it is done. I voiced my concerns about her being so limp and life-less. She wasn’t getting off the couch. She wasn’t moving. She wasn’t eating or drinking well and I know she is dehydrated. He tells me that he doesn’t feel she is sick enough to be put in the hospital. (I thought to myself… buddy you don’t know this child.) NOT that I want her in the hospital I just don’t want her to get worse. My Mama Bear comes rearing out and I can’t stop her! RSV is a virus so antibiotics don’t help. Usually though there is a secondary infection that pops up with the RSV making things worse. I’m really hoping we can bi-pass that. He refilled her breathing treatments and out of there we went.

I came home and called the big guns, Iowa City. Her NP talked me through it and I felt better after I got off the phone with him. She MUST drink. She can afford not to eat as she has what 2 pounds to spare… I say that as a sarcastic joke. She is so tiny. She’s already lost 1.5 pounds. We can’t lose any more. And I was so excited that she had gained the three pounds last month. Oh I’m sure we’ll get them back plus more!

Here is where she has spent the last three or so days.

She is resting now. Could everyone say a prayer that she will beat this RSV with in home care and not have to be put in the hospital? Thanks for your love and continued prayers.

~Terri

Tooth is Dead.

2011-03-21T20:48:00.002-05:00

Hello Ava followers! Ava has a few things going on right now. A few days ago, while I was brushing her teeth I noticed her front tooth was a strange color. It scared me. I made an appointment with our dentist this morning. She thinks that due to trauma the nerve in the tooth was damaged thus the tooth is dying. I can’t remember her hitting her tooth on anything. She says it is quite common. That made me feel a little better. This tooth is a bit loose and may be coming out sooner than it should. Dr. Gipple is hoping that she has no pain with it. The plan is to let it stay as long as it does not bother Ava. We also have to watch for infection on her gums above the tooth. When it does come out we are hoping she didn’t do major damage to the permanent tooth. Did I mention she LOVES the dentist? She has been asking to go there ever since last November. She looks SO grown up in the big dentist chair.

Here is the tooth in question. It actually looks worse in person.

I can’t believe how big she is getting. She just sat there quietly and let the dentist look her over.

Also she has a cough. I’ve started the breathing treatments and the steroids to kick it fast. Strange thing is no one else has a cold but her. She has no runny nose or any other symptoms besides the cough. I know she doesn’t have allergies so I’m hoping it will pass fast. A few days before her cough she told me she was getting a cold. I laughed and told her she was silly. I’m thinking she wasn’t so silly after all!

What a smile! I love this little doll!

I can count on my Ava warrior prayers to keep her supplied with healing prayers. Thanks for your happy thoughts and all your love.

~Terri

A Barney Kind of Day.

2011-03-02T11:28:00.001-06:00

Hello internet friends! There is so much to report. First the good weight news. Ava has gained THREE pounds in the last month. I myself just could not believe it. It took her stepping on the scale about ten times before I believed what I saw. I’m thinking the daily trip to the Dairy Queen has been helping. She loves vanilla Junior cones. She also loves eggs and noodles. Her appetite has been fabulous! She is also growing very tall. Last I checked she was 44 and a half inches tall!

Yesterday we took Ava to see Barney Live. She was SO happy. She danced in the isles and kept coming back to give me hug after hug thanking me for bringing her to see Barney. She must have thanked us ten times. She sang out loud and was not afraid to hold her sign up for all to see. I just smiled. I’m in awe. It was truly something I never thought she would get to see. God has blessed us. I will never forget her happiness. One the way home she rested well. She was so excited. I think it is neat to be able to give your child something they really love.

This was taken right before the show.

Yes that is Ava in the purple shirt in the isle dancing!

WOW what a day!

On Valentines Day I started a page on face book for parents of CDH kids. If you are interested please check out this link. https://www.facebook.com/raisingcdhkids (You can also click on the face book application at the right side of Ava’s website.) It is called “Raising Healthy Congenital Diaphragmatic Hernia Children.” I just feel obligated to help bring parents together in a good way and discuss our concerns and fears about raising a cdh child. It is nice to know there are SO many miracles like Ava out there living a healthy life. Yes they face issues but with parents that understand it become slightly less scary.

I took some pictures of Ava this morning. My laptop is getting worked on so I have no photoshop. These pictures are all unedited. I got this beautiful green dress at Younkers for $10.80. It fit like it was made for my little girl. She did so good. She is growing up so quickly.

AND this last one is my favorite. It reminds me of her looking to God. LOVE, LOVE, LOVE!

March is Congenital Diaphragmatic Hernia Awareness Month. Although CDH does not affect all babies it does affect many. It is not considered a “rare” birth defect anymore. More and more parents are finding this to be their child’s fate. Let me take the time to explain what CDH is… (inside of the womb) the diaphragm does not form properly, leaving a hole. The abdominal organs move up into the chest cavity, compromising the heart and lungs. Now you know!

Thanks for checking in on Ava. We appreciate your support and prayers. We feel your love!

~Terri

Snow Day!

2011-02-02T14:08:00.001-06:00

Well hello all! We had quite the snow storm here in Iowa. The wind was blowing. It was a blizzard here last night. It finally settled down early this morning. The girls are enjoying their day off. Brian couldn’t get to work this morning. We were snowed in! (This has NEVER happened.) It took us 3 hours to clean the sidewalks and driveway. He used the snow blower and I used the good ole’ shovel. We told the girls to stay inside until we finished….guess what? They couldn’t wait. They were TOO excited. They enjoyed themselves. Lexis kept saying, “Mom I must be dreaming!” Ava could barely walk around. The snow was up to her thighs. However she couldn’t stop smiling!

Miss Ava loving the snow… THIS was the huge snow ball she threw on Daddy. She kept saying, “HEADS UP DADDY!”

BEWARE DADDY! She’s got a BIG snow ball!

My three little snow girls. “How lucky are we Mom, no school!”

“Go Ava!”

Can she walk? Hands up for balance!

And AGAIN!

Can Ava shovel? Well let’s see…

SHE CAN!

Well this is no fun…back to playing!

Ava loves sledding. She gets cold fast but she doesn’t mind UNTIL we come inside. Then the heating pad helps warm her up :) She hated coming inside. Enjoy her fun!

She had such a good time in the snow. She’s over her cold. Her eye is all better and we are staying inside away from germs. Thanks for all the prayers!

So I guess we survived the Blizzard of 2011! Have a safe day everyone!

~Terri

Virus in the Eye.

2011-01-20T13:32:00.005-06:00

Hello! Ava is getting better thanks to all your prayers. Her cough is slowly leaving. She's been complaining her eyes hurt. Last night she cried so this morning I took her to the eye doctor. He was very nice. He told us she has a virus in her eyes, probably from her cold. He's seen many people lately with the same thing. It isn't serious but it can turn bacterial, which may mean more antibiotics. He gave us eye drops to put in them a few times a day. Hopefully she'll get better in a few days.

Also her appetite is back. She's been eating really good since she's feeling better. I don't believe she lost any weight from her cold. I always worry.

Here are a few pictures of today.

Thanks for all your prayers. We give God all the glory.

The book is coming along great. Thanks for the support. I know so many can benefit from Ava's journey. I sit back in awe of all that God has done for my little girl. Thanks for stopping by and have a great day everyone!

~Terri

Coughing take a hike!

2011-01-16T19:57:00.002-06:00

Hello Ava watchers. I had to take Ava back to the doctor on Saturday morning due to her cough. She just can't seem to kick it. I listened to her lungs here at home but I wanted to be sure it had not gone to her lungs. Her pulsox machine was saying she was doing great. Her saturation levels were 100 and her heart rate was normal. You know me I had to be certain. Good thing I took her in as she had a sinus and ear infection. Good news was her lungs sounded clear it was all in her nose and throat.

I'm hoping the antibiotics do the trick and fast. She is acting much better but the cough has GOT to go. She is not liking the breathing treatments so much anymore. She does this thing with the mask and it sounds like piggie noises. She entertains us!

Please pray that she gets over this cough very soon. I still worry for her lungs. Thanks for checking in!

~ Terri

Cold-ville...not a pleasant place.

2011-01-13T08:00:00.013-06:00

Hello everyone! Ava caught a nasty cough/cold on Sunday. She ran a low grade fever for a few days. She complained of a sore throat. I was nervous as ever. She is in good spirits but I can tell it is affecting her....she stays on the couch a good portion of the day. I right away started the Albuterol and Pulmicort treatments. She's also on Dimetap cold and cough every four hours.

I took her to a Otolaryngology or ENT (ear, nose, and throat) doctor on Monday. He thought it looked viral and not bacterial. He gave us nose spray (Patanase) and told us if she wasn't better in about 5 days to call him again.

See this silly Girl?

Her cough worried me so I got out her Pulsox machine. (This tells me her heart rate and her oxygenating number.) Her heart rate was about 100. (Which is normal.) Her O2 number was 98 so all was good. So right now I feel we are on the right track. I start worrying again when it becomes closer to the weekend. It seems all doctors disappear :) I'm glad the fever is gone. I know some may think I'm over exaggerating about a cold. However I never feel totally safe with Ava and a sickness. Here is a video of Ava this morning.

Make video montages at www.OneTrueMedia.com

Ava and I vistited a few of my sisters and a brother in St. Louis last week. We had tickets to see Joel Osteen. If you are not familiar....he is an awesome Preacher. He is all about being positive and giving hope. I started watching him on TV when I was pregnant with Ava. He helped encourage me to think of her as a blessing just as my other girls were. When he quoted the verse "All things work together for the glory of God." I knew he was 100% right. I HAD to have faith! SO when we found out he was doing a book signing, right near my sister's house we got very excited. I couldn't believe this was about to happen. "I was going to meet Joel Osteen!" We waited in line for about 30 minutes. Joel and his wife Victoria walked right by us. He stopped and shook my hand. It was a true gift. When we made it up to the table I told of how he inspired me and I told him about Ava and her birth defect. I explained how awesome it was for us to be able to witness a Miracle. He agreed and hoped all was well with Ava now. I was proud to be able to stand beside my family and my little Ava. How great is God? SO GREAT!

This is us and our signed books. We were a bit happy if you can't tell!

The concert was such an uplifting experience. I did keep Ava at my Sister's house as I knew it wasn't for her. I got such a blessing that night. God pulled at my heart strings. I started writing a book about Ava, 4 years ago. I stopped because I got discouraged. I told myself I wasn't a writer and who would publish 'my' book? Hearing his message made me realize it was 'my' time and that God wants me to fulfil ALL the dreams in my life. GOD will give me what I need to accomplish the book. So I've vowed to God, my family and friends I'll continue to write Ava's story. I have this wonderful blog to help piece it all together!

I'm occasionally asked if Ava will have to have other surgeries. As of today she is doing well. We keep an eye (by CT scan) on her gortex patch that serves as her diaphragm. She takes medicines to control her reflux. She has had no signs of bowel obstruction for about a year and a half now. She does have a severe pectus (large indent) above her lungs on her chest. So far it has not affected her breathing. We know her body is healing but can never be certain her patch won't break with her growth or be digested AGAIN by her bowel. We can only pray. None of us know our future. That is a worry I must give to God daily.

I can't protect Ava against all illnesses I know. I do realize she needs to be exposed eventually. It just hard to see her not feel well. Please everyone say a prayer that she gets over this soon. Her little eyes look so sad and sick. Thanks so much for stopping by! Stay healthy, well AND warm! It is 0 degress here in Iowa today...Buuurrrr!

~ Terri

Celebrating the New Year!

2011-01-01T16:24:00.014-06:00

Hello Ava followers. Happy New Year! My prayer is that we all have a Happy, Healthy Blessed 2011! I can't believe it has been over a month since I've posted. Things have been going good for us. Ava did get a cold but she managed to get through it with cold/cough medicine. Her sisters both had to be on antibiotics. This is huge for Ava! Time has been flying by for us. Christmas was Wonderful. Ava counted the days down before Santa would come. She had so much excitement Christmas Morning. She was able to keep the presents under the tree for almost three WHOLE weeks! We held our family Christmas at our house this year. It really meant so much to me. I was able to photograph my entire family. God is so good!

I love that So many of you still follow Ava's journey. I'm so thankful you can each see her in this healthy way. She hasn't gained weight but she hasn't lost any either. Her height is soaring. She is just growing up so fast....right before our eyes! She is in size 10 shoes! I thank God daily for His Goodness and Mercy in keeping Ava healthy.

I took a few pictures of her today. She was playing Dress-up and naturally she choose to be a Princess. And we HAD to find her tiara!

This has to be my favorite!

I'll back up now and give you a few from Christmas.

I even got a picture of my extended family. How cool to be able to have pictures for years to come?

Thanks for stopping by....We sure appreciate your comments and we Thank you for your prayers. A Happy and Healthy Blessed year to you All!

~Terri

Thanking God on this Wonderful Thanksgiving Day!

2010-11-24T23:38:00.002-06:00

I Praise God for all He has done and is doing for Ava. I made a short video of what I'm thankful for this Thanksgiving. Thanks again for all your Love, Support and Prayers. Your encouragement really helps. Happy Thanksgiving to all of Ava's WONDERFUL followers!

Ava is really into Santa this year. She begged us to take her out the very first time he was at our mall. She wasn't scared in the least. She told him she wanted, "Everything!" Gotta love a gal for trying! She is just growing into a little lady right before our eyes. She is very excited for Christmas.

~Terri

Ava the Cheerleader!

2010-11-16T21:18:00.003-06:00

Yes it is official she is a CHEERLEADER!

I just had to post this short little video of Ava cheering. Lexis her older sister is a Cheerleader and she decided she was one too! She has been asking me to make her a cheerleading outfit so today I decided today was that day! She LOVES cheering.

Photo and video editing at www.OneTrueMedia.com

Hope you all have a great evening.

~Terri

Seeing is Believing.

2010-11-10T12:40:00.008-06:00

Hello Ava followers. She is continuing to do well. I love that I only have to blog every few months. I appreciate all of you that have supported Ava throughout her start, through her troubles and her triumps. It means a great deal to me that so many care and believe in the Power of Prayer.

I found this verse today and was stunned by the impact it had on me. It took me back to being pregnant with Ava. We were so excited to be expecting our third child. I assumed everything would go as it always had, normally. But at 20 weeks I had some very unsettling feelings. I asked for an ultrasound and we found out Ava had Congenital Diaphragmatic Hernia. (No diaphragm...her heart was pushed over to the right. Her stomach, small and large bowel, spleen and liver were in the spot of her left lung. Her left lung was not able to grow.) The doctors were not very positive. They told us her odds of surviving were somewhere between 20 and 30 percent. To describe a little of our feelings well...devastation, confusion, a huge sense of loss, disappointment, and I was even a little angry with God. The Why's kept returning again and again. However I had grown up learning the Bible stories. I'd read all about the Miracles in the Bibile. How David had slane Golliath. How God had fed the 5,000 with 5 barley loaves and two fish. How God protected Shadrach, Meshach, and Abednego in the inferno. BUT did he do miracles today? I'd never seen one in my life up to that point. We didn't know the road that would lie ahead. We didn't know the outcome. We only had Faith that IF this was the path that God had chosen for our life we would follow His plan and make the best of what we had.

Here is the Verse, John 4:48 Jesus asked, "Will you never believe in me unless you see miraculous signs and wonders?"

WOW! He showed us Miracle after Miracle with Ava. It is quite grand to know that God's love is brightly around her.

I know there are many people out there today, struggling. It is hard in the midst of the storm to see the light. PLEASE have faith that God knows exactly what He is doing. Brighter days are ahead. Yes there are questions, there is doubt, just know you are not alone. I'm not sure why my post got so heavy. I just felt the need to let you all know the importance of trusting and knowing there is a reason for suffering. I appreciate life so much more now. My children mean the world to me. I believe with hard ache comes appreciation and love.

So onto the positive Ava is doing SUPER...We embraced the gorgeous weather yesterday and decided to take advantage of what may probably be the last photo ops of the season. Ava picked the dress and off we went. She has a spring to her step and her latest craze has been sparkly clothes and shoes. We took pictures over looking The Mighty Mississippi. Then we ended at her favorite location...the park!

I asked Ava for some ATTITUDE for this next picture....that is exactly what I got!

This was Ava's first year Trick or Treating. She's been doing so well we decided it was time! Here is a very short video of her Trick or Treating. She was a cat.

Make an on-line slide show at www.OneTrueMedia.com

Thanks for checking in on Ava. The Winter months are always scary for us so please continue to keep her in your prayers.

~Terri

"Just Being a Girl."

2010-10-18T20:07:00.001-05:00

Hello friends and family. It has been a wonderful few months. Ava is staying healthy and learning SO much. I love to watch her "Just being a little girl". Her speech teacher is super impressed with her progress. She is now talking in complete sentenses. She is ending her words with the proper sounds. Ava is not like your typical kid in many ways... starting at birth and now I find it funny that if she does ANYTHING wrong she apologizes. She is always saying she is sorry. Some of her words are still not right and "sorry" comes out as "Yardy". It is so cute and extremely hard to keep a straight face when she really IS in trouble. :)

Here is a few pictures I put together for you all. I know it has been a while since I posted. I'm just so grateful she is doing So well. These were taken today. She is also growing super tall.

We tried on a few costumes but have not decided on her final Halloween costume. She is so excited this year to go trick or treating. She really wants to be Scooby Doo so we shall see.

Here are some recent family pictures. Ava did really well.

Here are a few odds and ends pictures from the last few months. God has blessed us dearly!

This was taken at the homecoming parade. Ava always has so much fun. AND yes Brian is once again the Bull dog!

Oh yes one more HUGE change in Ava's life.... she is now sharing a room with Emeline. We put the bunk beds back in and painted it. It is just darling! I still check on her more than necessary. How can I not?

Thanks for dropping by. Help us continue to pray for her health and safety. We are looking towards a very bright future for a little girl whose start was very uncertain. Thank you Lord!

~Terri

“Celebrating Life with Ava.”

2010-08-28T20:32:00.001-05:00

Okay so it has been a little while since my last post but that means all is fabulous here in Ava’s world. We celebrated her 4th birthday today with family and friends. Her actual birth DAY is on Tuesday the 31st. I can’t believe how well she is doing. I can remember so vividly 4 years ago. My heart was so heavy but HOPE was so alive in our world. God has been so good to us. I wish I could take away her painful memories. THAT is still sad to me. However I’m thrilled in her progress.

I put this video together and wow did it bring back the tears for us. Ava has been through more in the last 4 years than most of us will go through in an entire lifetime. Yes the video is long (20 minutes) but I promise you it will bless your heart and give you a huge blessing. (Just Beware some of the pictures may be disturbing to some viewers.)

Photo and video editing at www.OneTrueMedia.com

Here are her birthday party pictures of today.

Some precious pictures of Ava and some of her guests. She was adorable walking around telling everyone, “Happy Birthday….thank you.” I think she thought it was everyone’s birthday :) Silly Girl!

Grandma D lovin’ on the birthday girl.

Aunt Marsha and the Birthday girlie! Thanks Aunt Marsha for the delicious Dora Cake. It was the best!

Grandma H is shining in this picture of her and her Miracle grand daughter.

Uncle Billy and Ava.

Aunt Lela got Miss Ava the talking Dora doll she wanted SO bad. Thanks Aunt Lela!

Ahhhh…Daddy and his Little Girl!

Great Grandma Bonnie adores Ava.

Grandpa D….let me tell you how much Ava loves her grandpa. She follows him around like a duckling. Where ever grandpa is Ava is as well!

Ava and Great Grandpa Delbert. He had just stole a kiss from her….too precious gramps!

THESE three adorable girls are my most prized possessions in the world. We tried to get a family photo but since the birthday girl didn’t get her nap it was not possible.

BUT since I know you want to see it here it is… not pleasant I might remind you :)

Thanks for stopping by! Love you all!

~Terri

Conquering Her Fears...

2010-07-21T17:45:00.007-05:00

Ava says "Hello Eveebodi!" She has been doing LOTS of new things. We went on a small family vacation last week to Adventureland. She rode on a few of the rides. She was not afraid at all. She rode the planes, trains, dragons, boats, lady bugs, small ferris wheel and kids semi trucks. She was in Heaven I have to add. She was smiling ear to ear most of the time. Before the end of the afternoon she was all tuckered out. We had a great day! Enjoy the slideshow of a few of our favorite pictures.

Customize your own free picture slideshow

Ava was a bit held back in her gaining weight due to a cold. We put her on breathing treatments that seemed to help out a ton. She is finally getting back to normal. I know it was due to her being so "out in public" but she really needed to get out an experience life.

I weighed her today and she is back to 31 pounds. She had lost a pound so I was very worried. Must have been all the sweet corn we've been eating lately with the REAL better added to hers. She eats the butter plain! Yep she loves it!

I was concerned about her g tube hole as it was getting red again but with a few days of antibiotic ointment it is looking much better. She has just a bit more to close and it will be all healed.

I took the girls on a bike ride today to the park. It was SO hot out today.I brought along my tiny camera to get a few pictures. Take a look.

Back to the title of the post... Forever Ava has been afraid of almost everything. She is very afraid to try new things. She holds back until she is 100% sure she will not get hurt. The amusement park was a big step for Ava but tackling the waterpark was HUGE. She went down the waterslide for the very first time yesterday. I was SUPER proud of her. Watch the video below...

Make an on-line slide show at www.OneTrueMedia.com

Please continue to keep Ava in your prayers.Thanks for your love and support.

~Terri

Vacation + Ava = Stress.

2010-07-06T12:15:00.001-05:00

Hello Ava friends. We are in St. Louis on vacation. We have a lot of family here and it is such a nice, busy place! We came on Friday and all was good. We celebrated 4th of July with the three F’s… AWESOME Family, Food and Fireworks.

My favorite picture of the 4th this year…

Okay this too is one of my favs. This is our newest addition to the family….Christian.

Ava enjoying fireworks.

My sister’s dog patches kept barking at her when she would try to ride the tractor. It was so cute.

Miss Celebration shows her 4th spirit!

Can I take your order? This is her favorite game. She asks and then she scribbles on the paper.

She now tells us, “I eat and get bigger and bigger and bigger!”

We have a pinata every year and the kids go wild. Ava not so much but we enjoy watching.

Here is all the grandkids but one.

Ava relaxing on the swing.

AND no 4th is complete without a tractor ride.

The WORKS!

We saw the air show and fireworks at the arch. It was a site to see.

Did you see the guy on the airplane? Yikes that scared us!

This was everyone that went to the fireworks on the 4th. Pretty large groups huh?

Miss thing lovin the fireworks.

So yea this is me. We did glow in the dark sticks and got real creative.

My wonderful sisters and I.

Lexis, Emeline and Abby.

Awesome fireworks!

Ava as you know has to keep me popping! Yesterday she started becoming very tired and grouchy. She wasn’t interested in eating. I knew something was up with her. She then ran a fever of 101.8. Her hole (where her g tube had been) was red. It was also raised a little bit. It looked very different than the day before. I called her doctor’s office and naturally they were all off due to the holiday. I was then transferred to the ER doctor on call. I explained our situation and he reluctantly agreed to give us antibiotics. I felt confident it was an infection at the site. Within about 4 hours of giving her a dose of Tylenol and her antibiotics she was feeling much better, even wanting to eat again. Today she is pretty much back to her normal self. I am so glad that I got on top of it before it became a raging war. The hole is still open a tiny bit. I’m hoping it closes completely soon.

Thanks for stopping by and keep her in your prayers.

~Terri

Ava is G-tube FREE!

2010-06-30T22:46:00.001-05:00

Hello to ALL! If I knew what today would bring I probably would have crawled back in bed ;) We decided before she took her nap that I would replace her g-tube button. We have been using the same tube for 6 months. I thought since she hates changing it I wouldn’t upset her until it broke and we had to BUT then I got nervous since we are leaving on vacation Friday. So I decided today was the day. I pulled the old one out and did what I always do…put the new one right back in. For the life of me I couldn't get it in. Her stomach hole had shifted. She has grown so tall in the last year. I called her nurse practitioner and he wanted us to come right up. My gut instinct was that this was Ava’s bodies way of letting us know that it was time to let it go. She did this with the central line as well. If you remember two months after her last surgery in June 09 she developed a very high fever. We assumed it was her line. We tested it and she was put on antibiotics. They decided they didn’t want to take the risk so they took her to surgery to remove the central line since she was doing so well without it. There was NEVER an infection that was found in her line BUT I believe with all my heart it was Ava’s way of saying, “We need this no longer so goodbye Central line! I called Brian at work and he thought we should try to save it. We had been informed by the NP that putting in another line later would be no easy task. She would have to have surgery. I debated this with myself long and hard. (A big whopping 5 minutes!)We took her to the hospital and her NP worked on it for an hour and a half and couldn't get it in. She was SO good. He used metal rods to try and make the hole bigger but nothing worked. Her doctor thought at her visit last week that she'd be fine without it. She was so patient and about four times she cried and made pretty horrible faces.

(This is our awesome NP Josh Peterson. He really tried his hardest to get her tube in .. her body had other plans. We can feel his love and care for Ava.)

We knew it hurt but she was relaxing so he could do what he had to do. I decided that enough was enough and obviously this was a sign. I can't wrap my brain around it...no getting up at night to a beeping machine. I'll hook her up to her O2 monitor for a few nights just to be sure all is okay. This poor little girl...yet she was SO brave. I'm telling you right now I wouldn't have done as good as she did.

The hole should close on it’s own. In fact it was already starting to close as little as 2 hours from when I pulled the old one out. She has a bandage over it for now but I expect knowing her healing capabilities it will be closed in 24 hours all on it’s own.

I am in AWE of her courage. I feel like a broken record but it is so true she is such a strong little girl. She was given to me to teach me patience, love, understanding and God’s true Grace.

So I ask of each one of you… Ava needs to maintain her weight but better yet she needs to gain. I will do everything in my power. She needs her prayer warriors once again. We need Ava to stay healthy and strong AND gain weight without her tube. I’m rightfully nervous as in 9 months she hasn’t gained anything and we’ve been doing nightly feeds. She will be lacking about 2500 calories a week. I know this is something Ava CAN do! Thanks for your love, prayers and support. God IS good!

Here is a picture I took of her and I a few days ago.

~Terri

I Never Imagined…

2010-06-22T22:29:00.001-05:00

Ava would be as GOOD as she is today ;)

Hello Ava followers. I can’t thank you enough for your love and support. We have so many supporters. We have had 2930 people view our carepage site. (www.carepages.com page name : avahelmick ) Our supporters on CP alone have left 5911 messages. On Ava’s blog she has had 76554 hits since October 08. Wow we feel So blessed. Thank you for your comments and notes of encouragements. If you ever want to contact me directly my email address is mycdhlife@gmail.com. I would love to hear from you!

SO good news today. Brian and I took Ava to University of Iowa Children’s Hospital for her follow up appointment with her surgeon. She had a CT scan to check her diaphragm and internal organs. She was such a big girl. I was so impressed at how well she did. It brought tears to my eyes that she WAS growing up and she was not my little baby anymore and things didn’t scare her as much as they did before. I am very honest with her and explain how things will feel. If they will hurt I tell her it will hurt and then what is going to happen. We expected her to get IV contrast for the test but instead they allowed us to give her the contrast through her g tube. They also did an enema. She took it like a champ and did everything I asked her to do. She was such a brave and strong girl today.

Her NP and her surgeon was so impressed at how she looked. They are thrilled with her progress. Doctor Shilyanski told us that what he saw from her CT scan that things looked really good. The CT scans will be looked over in detail by their Pediatric radiology and he will get back to us if they find anything that looks out of place. Dr. S discussed lowering Ava’s night time feeds. We heard something that made our heart REJOICE and PRAISE GOD…. “Soon we will think about removing Ava’s g tube.” We do know that right now our goal is to keep her weight going up and we also know that things could change but to hear these words today were…. well all part of this Miracle we call our daughter.

We let Ava play on the playground after her test was finished and before her appointment. For many, many days we looked down on this same playground almost 2 years ago and throughout her countless hospital surgeries and stays, and never imagined THIS day and this time we could watch her so happy and so full of life. I said a prayer out loud as I looked up toward the 7th floor PICU window. God has His hand safely around her and I am in awe of his Power.

The top floor was Ava’s PICU room.

We also walked and took a few pictures near the waterfalls. I didn’t even realize this was there. It was extremely peaceful.

Ava and Mommy

Ava and Daddy

So we watch Ava and are excited to see God’s Blessings upon us. If you have a child or someone you love struggling and perhaps near death PLEASE have Hope and Faith that life can turn it all around. It is AMAZING to see her and know that this all could have turned out very differently. I am humbled by His Goodness and Grace.

“Thank you Lord for allowing Ava to be in our lives and teaching us how to lift our hearts in the bad times and the good times. We continue to pray for her health and her strength. We are honored that you sent her to us and that you entrusted her in our arms. We will do all we can to keep her safe and happy. We love you and honor you in all we do!”

~Terri

Enjoying Life…

2010-06-08T16:49:00.001-05:00

Hello everyone! That title is exactly our life right now. We are enjoying life thoroughly! As you can see she looks wonderful and healthy too!

Ava’s so full of energy that her weight has gone down. Not a good thing. It is very difficult to keep a blossoming little girl still especially one that was very sick this time last year. Dates that go by trigger memories. I must brag a little as her last major abdominal surgery was on June 4, 2009. To look back on her and see how sick she was and look at her today, you would never know it was the same child! She is just growing and learning SO much. We ran into a teacher from Emeline’s school the other day and she asked if this was, “Thee Ava?” I smiled with great pride for her. She has come a long way :0)

Her fingernail IS growing back nicely. Thanks for all the prayers. Her doctor was very pleased. I am so relieved. The white you see is her new nail.

Once again we were given the opportunity to team up with CSN stores. We will be getting Ava another great item through them. Please check out this online store with lots of great values. Ava uses her Dora chair daily! They have beautiful bathroom vanities that you must see!

Here are some pictures of the girls this last Sunday. They were great sports. They got into it telling me the locations they wanted to go. I have such a hard time photographing them all together. Ava is at the age where she wants to give me those really odd looking smiles. Bless her little heart! It is a battle to get all three girls looking at me and smiling!

This is called “Cobble Stone Alley” here in Burlington. It is a tourist attraction right along with “Snake Alley.” It is a beautiful place to take pictures.

This picture was taken on our famous, “Snake Alley”.

This is one of my favorites of Emeline and Ava.

You can see how great Ava is growing. She is talking now so well. Her favorite things to say…. “No way." and “I not Mommy.” If you ask her where she is going she replies, “I not going nowhere.” She cracks me up.

I caught her “typical” look! Here it is!

We go to the park everyday. She has so much catching up to do….yes I carry wipes at all times :) This is her way of swinging. I ask if her button hurts her and she says, “No mama!” I worry because I don’t want it coming out unexpectedly….that would not be good, considering the hole can close in as little as five minutes. Yep all realities but we are here to have fun not worry!

AND her new outdoor toy she uses all the time at Grandpa and Grandma D’s house…

Yes friends we are enjoying Life. What a beautiful thing! Stop today and thank God for all you have. This time on earth is so short. Tell the ones you love that you love and appreciate them. None of us are assured of tomorrow. I’ve come to realize that when things happen in my life that don’t make sense, and I don’t understand why, it’s because God has taken control. Thanks for your continued love and support.

~Terri

Saying Good-bye is never easy.

2010-05-06T16:37:00.001-05:00

Hello to all of our loyal Ava followers. She is doing great. She had her stitches removed from her index finger last Thursday. Daddy surprised us by taking off work and meeting us at the doctor’s office. She loves her Daddy.

Ava was very leery of letting the nurse have her finger. So she watched the nurse the entire time. You should have seen the CROCODILE tears.

It broke my heart and I knew it hurt her but she was very still. It did bleed a bit and then stopped. I had gotten her a surprise (Dora necklace) if she agreed to be very still and let the nurse take them out. Ava came through with flying colors. Yet again I was proud of her for being so brave!

Ava’s finger looks like this today. Thank the good Lord she was able to keep it. As you can see her fingernail is still on but we know it will fall off and doctor is not sure it will ever grow back. If I know Ava and how her body works it WILL come back and stronger than before. Praise God!

Our lives changed forever on May 1st, my grandfather passed away. Ava and I for the last 8 months had been caring for my grandfather every morning (Monday – Friday). Our family was bound and determined to carry out grandpa’s wishes of staying in his home as long as possible. A few weeks ago he became very sick and more confused and he ended up in the hospital. We then found out that with all his health issues and continued problems that the doctors thought his time here on earth was drawing to an end. My Mother arranged for Hospice to come and help us with his care. A little after a week from coming home from the hospital I went over as I did every morning and found him in a large pool of blood. I quickly made arrangements for someone to come and get Ava as I knew this was very serious. My mother, her sister and her brother stayed there round the clock caring for my grandfather. So many family and friends came to say their good buys. I have never felt so much love in all my life. I am so proud to be apart of my family. Everyone came together and we all shared good moments and well not so good moments of my grandpa’s life. (If you know grandpa you know what I mean :) One thing I can always say about my grandpa is that he appreciated every single thing I ever did for him. It warmed my heart when the hospice nurse put on his new clear Oxygen tubing and he immediately told her that was my job and no one could do it as good as me! I am honored that I could really get to know my grandpa the last 8 months. He knew all I had been through with Ava and constantly told me how even though I wasn’t technically a “nurse” I could be his nurse any day, because I knew it all!

Grandpa didn’t die that day but continued to fight for another four days. He died Saturday morning in his own bed at home with all of us around him. It was such an incredible experience I will never forget. Love, love, love surrounded him! We held him and knew he was in Heaven and that he was no longer in pain and that he was now totally whole again! My Mother reassured him that he could go and that we would all be okay. He was free to go join my grandma. Thirty seconds later he took his last breath.

I can definitely say Ava gets her strength and stamina from her Great Grandfather James. I will miss him greatly. I was again blessed to be able to sing at his funeral. I sang,

“My Savior First of All”.

When my life work is ended, and I cross the swelling tide,
When the bright and glorious morning I shall see;
I shall know my Redeemer when I reach the other side,
And His smile will be the first to welcome me.

Chorus

I shall know Him, I shall know Him,
And redeemed by His side I shall stand,
I shall know Him, I shall know Him,
By the print of the nails in His hand.

Oh, the soul thrilling rapture when I view His blessèd face,
And the luster of His kindly beaming eye;
How my full heart will praise Him for the mercy, love and grace,
That prepare for me a mansion in the sky.

Oh, the dear ones in glory, how they beckon me to come,
And our parting at the river I recall;
To the sweet vales of Eden they will sing my welcome home;
But I long to meet my Savior first of all.

Through the gates to the city in a robe of spotless white,
He will lead me where no tears will ever fall;
In the glad song of ages I shall mingle with delight;
But I long to meet my Savior first of all.

To hear the song you can go to http://www.cyberhymnal.org/htm/m/y/mysavior.htm

My sister Amanda and I sang “In The Garden” since it fit perfect with his life.

He was an avid gardener and sold Vegetables out of his garage for 15 years. He even sold to Faith Hill without knowing it. I have to share this story. She was jogging by his vegetable stand early one morning. She came up and asked if she could take some and then come by later to pay him. He told her he didn’t do that. An hour or so later she came back in a limo and asked him if he had ever heard of her. He simply said “No.” We of course we stunned. That is our grandpa. No one could beat him out of money, not even Faith Hill!

Here is Lexis and Emeline near his Great Grandchildren collage at the funeral.

I love you Grandpa!

I took advantage of having all my family at his funeral. I had just purchased a very expensive camera hoping to take off in my photography business. I told them all I wanted to get a family picture. We have a very large family. I have five sisters and one brother. (Mom tells me to tell everyone they are all from the same Mom and Dad :) Love that! So here is my beautiful family. As I said before I am extremely proud to be apart of such a Blessed group. The Diercks Family from left to right Rachel, Mary, Tamra, David, Ron, Donna, Amanda, Tina, and me (Terri).

Here all of us kids are with my Dad’s parents. It had been a good fifteen years or longer since our whole family has taken a family picture. I am thrilled!!

The days that followed grandpa’s death we were given beautiful rainbows. Here is one I captured on camera right behind his house. Though bad times are never fun God sends us His blessed assurance that one day we too will see His face. It is only Good bye for a little while.

Thanks for taking the time to read. Life is such a gift. It must be cherished!

~Terri

Ava’s Art of Healing.

2010-04-23T16:27:00.001-05:00

Hello Ava followers. Miss Ava is hanging in there. She is still on pain medicine but is weaning off them quite nicely. We have been keeping her finger bandaged and dry so as not to make her finger any worse. We went to a follow-up with her Ortho doctor yesterday and he thought her finger still looked like it was healing nicely… BUT yea there is a but she could still lose this tip if it didn’t complete the healing process. He didn’t know if her fingernail would ever grow back. At this time I’m just really praying that the stitches work and that her finger stays healthy. Ava always has to keep me guessing and being her BIGGEST advocate. Last night she bumped her finger and lost her bandage. She always gets really upset if her “Eww” (that is what she calls it) gets exposed. She hates seeing her “owie.” So I went to get more bandages and as I looked closer I noticed some flesh-like puss coming out of her finger. I was grossed out to say the least AND yet again started worrying, especially after the doctor told me she could still lose it. :( So this morning I called the doctor and told them about the “eww” I had seen last night and again this morning. Her regular doctor was not in but they offered to see her anyway. I was relieved when they told me that it still looked fine. (Ava always seem to pull the weekend, “I’m getting worse but there is no doctors office open” thing.) My fear is that she may lose that finger tip. I can’t let this happen. She has had too many scars already that set her apart from kids her age. I can’t help but ask myself why did this have to happen to Ava?

However she is a firecracker and NOTHING and I mean nothing stops her. I wish I had half her strength and courage.

After her appointment today we went by the water fountain, in the hospital, to throw her coins in and “make a wish”…. she loves doing that. What a sweetheart she truly is. Then we were on our way to Wal-mart to get her some Dora and Scooby bandaids. It is nice being able to just put regular bandaids on now. Bath time is a bit tricky but we make it work. :)

A picture of her sore finger up close today.

PLEASE join with us and pray again for Ava and complete healing. I know that if her stomach can totally close by itself in four months that this little finger can heal totally. She gets her stitches out next Thursday. I was glad they are leaving them in for fourteen days. She is such a reminder of God’s love!

~Terri

Dealing with it.

2010-04-17T19:56:00.001-05:00

Ava is coping as well as possible. She was upset this morning that she had a bandage on and immediately tried to take it off. I assured her it had to stay on to heal her finger. She did get it off once and yikes did it look bad. I put it right back on and warned her to keep it on PLEASE! I kept on her pain meds all night alternating between Motrin and then her Tylenol with Codeine. It was pretty simple considering she has a g tube. (Sometimes buttons come in extremely handy. :) She would yell out but not wake up fully. Her heart rate was a bit high. I’m thankful I have a monitor to keep everything in check, especially in times like these.

Her sisters love to comfort her in all ways possible…..after all that is what God gave us sisters for!

A little kiss.

The hospital called today and told us that Radiology re-read her x rays and they confirmed that she had in fact fractured her finger. The sad news is there is still nothing more than can do. I will be taking her to an Orthopedic doctor on Monday. She is also on Antibiotics to help eliminate possible infection. No let’s not go there.

The medicine has made her very sleepy today and we both laid down for a well deserved nap this afternoon. As soon as it is almost medicine time she complains of pain. She is a trouper though in all sense of the word.

Wow did this accident with Ava stir things back up in my heart. I’m disappointed in myself for not being strong. I knew I was going to faint but pushed it out of my mind. I guess when I fell Ava was not hurt again but I feel guilty that I could have caused her more pain and for that I’m deeply sad. However I know that all things happen for a reason and I have 100% confidence that God was also holding Ava as I fell. I also know that I can’t be “Super Mom” all the time and I have to accept that I can’t handle it all. I’m so thankful that I have an awesome husband that took control. He was concerned about me but knew he had to get Ava to the hospital fast. AND it affirms the notion that God sends everything we need our way when we need it. My friend Heidi was here to calm me and guide us through our panic. So glad that everything worked out. Ava has been through so much but with her CDH complications I usually have time to ponder what we need to do and the steps to take. Last night there was no time and everything was in limbo. My mind just went nuts and rightfully so. You can’t stop what happens in life.

Last night when Emeline saw me after we got home from the ER, she ran up and gave me a huge hug. She said, “Mom I thought you were dead.” Lexis and her were pretty stirred up and were crying. I explained to her that my mind went on overload and I just couldn’t take it all in causing me to shut down. She was wondering who was going to watch her and Lexis if I died. I had to laugh that she thought so far ahead but hey that’s Emeline. I am so blessed!

I woke up this morning feeling sick about it all. It almost made me very afraid to even live. What is next? Can we handle more? Why must bad things happen? As I said I have faith and know it all works out. This is just another bump in the road called “Life”. Please keep us in your prayers. This accident seemed small compared to all that we’ve been through with Ava but it brought so much raw pain right back up to the surface. I’m still working through it all. I haven’t brought myself to cry quite yet but I feel it is coming any minute. I’m just happy she is feeling better and I can wrap my my arms around her. Right now she is laughing at the “Curious George” Movie when George runs in the bananas and apples and they go everywhere. Life sure has its twists and turns. The bad moments stick in our minds…I wish the good ones took priority. I know that if Jesus cares for the Sparrow He cares about me!

~Terri

Ava’s Ordeal tonight

2010-04-16T21:53:00.001-05:00

So all was going well today until the window came down on Ava’s finger. One of my friends were over to visit with me from Idaho. We heard her cries…Brian got to her before I did. When I picked her up I noticed her finger looked odd. I looked a little closer and saw that it was hanging by skin at the tip. I asked Heidi to look at it but knew it was pretty bad. We all agreed we needed to hurry to the Emergency Room. I started feeling light headed and knew that was a sign for me that I was going to pass out. I reasoned with myself that the feeling would pass as I knew I needed to be the strong one in this very delicate situation as I had done so many times before. NOPE couldn’t control it. I awoke to chaos and knew I had fallen with Ava. It took me several minutes to “wake up” fully and realize that Brian had taken her to the ER. Thank God that Heidi was here… Heidi’s son was also born with CDH (Ava’s birth defect) She has had to become like me a make shift nurse. She was so calm and reassuring that everything was fine and that Ava was being taken care of and that I should just try and get better myself.

Marsha my sister in law rushed here and she took me to the ER. There I found Ava snuggled in her Daddy’s arms. I felt relieved. They took x rays and didn’t find any broken bones. We were glad to hear that.

Yes I did grab my small camera as I was heading out the door..…you know me. Still quite shaken up from falling but still aware that pictures are needed.

Prepare yourself. It actually looks good in this picture. The way they had her hand made it come back together. The underneath was the only skin holding it on.

Ava did well with them numbing her up. (A few very loud screams.) She watched every move the doctor made while sewing her finger back on. I’m still not feeling quite up to par but have to be here for Ava.

They bandaged her up and on the way home she feel asleep. May have been a good thing she skipped her nap today. I have to admit for her first “normal” kid thing it was no fun. Please keep Ava in your prayers.

~Terri

Living Life!

2010-04-14T22:23:00.001-05:00

Hello Ava fans! Life is going spectacular for Ava! We are doing more and more exciting things as a family. This might sound odd to many, but I can count on one hand how many times Ava has been to the park in her three and a half years. She has needed to be extremely protected from the “outside” world. Lately though I’ve put my fears aside so that she can LIVE and enjoy being a three year old little darling! She is living it up! The park is her favorite place now. Our motto now, “So many parks, so little time!”

This has got to be one of my favorites! Her and swings go hand in hand.

Brian, Ava and I in the park, near this beautiful tree. Lexis and Emeline were at Tae Kwan Do class. I’m hoping to get a family picture soon. Our weather has been so wonderful!

How cute is she?

Ava had a hearing test today. She did so good that the lady told us if everyone did as good as Ava she would have the easiest job in the world. She sat there very still and was very patient. I have a partial hearing loss (since birth) so I know the tests very well. :)

Next we went to her ear doctor. He told us she passed the hearing test and her ears looked great. He wants to keep testing her every six months as we have been doing because her left ear was slightly different. We are unsure if this will be “an issue” but we’ll keep our eyes and ears on it!

The reason for the suspicion of a hearing loss is due to the many antibiotics and medicines she has had from birth to present because of complications with her birth defect, Congenital Diaphragmatic Hernia. It adds to her chances since I also have a hearing loss. So far though none of the girls have any hearing issues.

She is growing so big as you can see. She just climbs up in the chair and waits for Dr. Lyons to come in. He is very animated and she likes him.

Naturally after she did so good I had to reward her by going to the park for a picnic and play time. See how excited she looks after I told her she must eat first!

And off she goes…..

She is not afraid of the big slides….unless they have a roof over them then she wants nothing to do with them. Otherwise, yes she goes down and has little worry. I again put aside my worries as well. I’m so happy she can be a little monkey.

Walking? No she runs everywhere.

I couldn’t resist snapping a few extra today. It was a gorgeous 75 degrees out!

Loved ALL these beautiful little pink flowers. It almost looked like snow. I’m in awe of God’s magnificent handiwork. I love Spring!

Thanks for stopping by and keep saying prayers that Ava remains healthy. We are so Blessed and know how lucky we are to have Ava. She has come so far!

~Terri

A New Day!

2010-03-25T20:41:00.001-05:00

Hello to All! I feel like it’s been ages since I posted. Ava has been doing pretty good. We are praising God that she is staying well. It is hard to imagine last year at this time she was fed by a central line in her upper chest area. We endured a hospital stay to remove an infected line a few days before Easter but ended up going home Easter day, thanks to a wonderful doctor. A lot has gone right this year and we are just thrilled by her progress. Her speech teacher can’t believe she is the same little girl. Her vocabulary has grown from a few words to a few hundred. She is putting four words together at a time. We can easily understand her needs and wants. I marvel at her daily. She has been through so much and yet you would never know. Some days it is hard to hold back the tears of pure thankfulness I feel. Why am I SO extremely blessed? God is GOOD!

The things she hates….having her hair done and watching her sisters go off to school. She loves helping me around the house and yes she still loves Dora but has added Scooby Doo to the mix!

We are still feeding Ava two cans of Complete Pediatric through her g tube about 6 days a week. We generally take Saturdays as her day of rest. She is so used to the ritual that she gets her supplies out herself and waits on her bed until we come and get everything set up. It takes a good ten minutes to “Hook her up” and this is our time we love on her :) She never complains about the tube or the Pulsox monitor that gets put on her foot to help alert us if something goes wrong with her during the night. I’ve gotten used to the alarms going off 2-5 times a night if the tubing gets kinked, formula runs low or tubing gets wrapped around her neck. (Yes it has happened more times than I want to count.) If it helps her grow then we can manage. I’m just honored that God let her stay with us and that He has healed her the way that He has. I can’t look too far into the future BUT I know He will always be here and that is what makes me want to sing each and every day. So as of now we rejoice that life is quite BORING again. We adore boring!

Here is Ava and her new desk that I mentioned in the last post. We got this desk from http://www.csnstores.com They have some great things and reasonably priced.

She still loves to play “Peek-a-boo”!

I decided that after we dropped Lexis and Emeline off at Tae Kwan Do tonight that I was going to take some pictures of Ava. I can’t believe how tall she is getting. She is really something else and has quite the personality to match her life story. In one word she is “Amazing” to us.

I did want you all to check out a new Facebook page I started called “Advocate for your Child”. http://www.facebook.com/pages/Advocate-for-your-Child/311281946246 I believe without a doubt that Ava was sent to us so that we could help others going through tough times. I know all too well what a true friend is and I’ve met MANY wonderful parents along the way that have given me great advice. If I can help I’m there. Please feel free to “become a fan”. I give many great tips on how to speak up for your child.

Thanks for dropping by and for all your thoughts, love and prayers. We know that if God is on our side we WILL go far!

~Terri

Wonderful Opportunities.

2010-03-02T17:04:00.001-06:00

Hello Ava fans. She has been a little fire-cracker lately. She wants to do everything “her” way. She is not afraid to climb, hop, bend over backwards, jump off furniture or do a high dive into the floor! Yep that is my daughter. She stares life straight in the eye and defies odds! :) We now know what kept her alive SO many times. She is so full of will power.

She has been mimicking me…..

Yes that is an Elliptical. She says, “Me Time!” Huh strange that’s what “I” say! I’ve been getting back into shape. I started in December. I’ve lost 18 pounds! It is sad how us Mom’s lose ourselves in the process of having children. I’m excited about looking better and eating healthier.

Here is a little video of her.

Make an on-line slideshow at www.OneTrueMedia.com

Each night Ava gets on the elliptical for a good 2 minutes, NO joke. She is getting quite good.

I did change Ava’s g tube on Wednesday night and WOW was that hard again. This time I decided to do it quick with one pull. Ava’s body creates a layer of skin around the button that must be broken in order to remove it. I imagine it is quite painful but it must be changed. She screamed but it came out and we got the newer size ATM Mini One button in and it is working great. I can’t say enough great things about this button!

During the day I’ve been working with her on Colors and Shapes. We’ve been looking for a desk that will be perfect for Ava. She needs something that will fit her and also something that provides storage for her supplies. We were offered the opportunity to do a review for the CSN Stores online. We are excited to be getting a “Dora the Explorer” desk from them.

Please go and check them out… kids beds

Again here is their store site. http://www.csnstores.com Also their prices are really good. I can’t wait for Ava to see this desk. We’ll let you know how it is once we receive it. Thanks again to the CSN Stores!

Again THANKS for stopping by…..we really appreciate your thoughts and prayers!

~Terri

Surgical Check-up

2010-02-23T21:42:00.001-06:00

Hello Ava followers. I have some great news to share. Ava’s check-up went really well this afternoon. We were pleasantly surprised with Ava’s growth chart. Her weight was 31.7, which puts her in the 42nd percentile. Her height was in the 95th percentile!! Two years ago (before she reherniated) she wasn’t even ON the growth chart. This is HUGE! It tells me that she is doing excellent. Her body is not only healing but thriving! Dr. Shilyanski was very surprised. I made him a special collage. It says, “Because of You…Ava is Alive.” It sums up so many feelings we have for this man. He was a miracle worker with Ava. God used his hands on our daughter.

I thought you might like to see the process. Yes that is a pacifier in her mouth. She still loves that thing and we just can’t get her to part with it quite yet…..

Blood pressure check. She sat there patiently and waited for it to beep.

Then to the exam 27 room we went….she gets so excited to draw on the board. Her and Daddy were drawing some pretty good pictures.

Wait…..Okay a SMILE guys. We got a smile!

Daddy and Ava….I love this picture.

“Which hand Ava?” See her tongue?

And Miss Ava on the table. Isn’t she getting so big?

We discussed preventative measures to keep Ava safe and healthy. I asked if we could do a CT scan to keep an eye on her diaphragm….her Doctor agreed quickly. He also asked if we wanted to do an x ray today. We thought that was a great plan. We will do the CT scan in June if the x rays look good today. Also Ava will be visiting the Spine Doctor in June as well. (Many CDH kids have spinal problems so we want to make sure she get thoroughly checked out. We don’t know what the future is going to be for Ava but it makes me feel better if we stay on top of things before they happen. I’m not good with surprises :)

Here is Ava doing the first x ray. (This was the VERY first time she didn’t cry for an x ray. It almost made me cry that she was growing up and wasn’t a baby anymore.)

Here is Ava’s x ray picture.

Here is a normal chest x ray. Interesting huh? Her left lung that was damaged and small at birth is now larger than her right lung.

This is the second one they took. She was being such a big girl :)

And here is that x ray.

I have to say my little girl has come a LONG way and I am extremely proud of her.

Our wonderful Nurse Practitioner, Mr. Peterson asked if I ever thought Ava would be this good……I answered, “No I never thought she would be this good.” I owe it all to God. He is the Handiworker. He knows and cares about my little Ava. Before Ava came along I had heard of Miracles, now I personally have witnessed first hand God’s Miracles. Wow is it awesome to behold!

Our way home the road was very bad. The snow was blowing and drifting and at one point the back of the Suburban started to swing to the right, then to the left. I felt for sure we were headed for an accident. I prayed and prayed for God to protect us all. I was calm and I believe that God took over the steering wheel and guided the car. We made it home safe and sound. It is an AMAZING feeling when you know that God is right there with you. So glad I made Him my friend many, many years ago.

Thanks for stopping by Ava’s site. We hope that Ava can provide some sort of inspiration for you and your family. We have been down the long/dark path and have not seen light for days and days. I’m here to remind you there IS light at the end of the tunnel. Please trust that God has you right where He wants you. This too shall pass.

Again some inspiring Bible verses that may help you tonight.

Isaiah 40:31 But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Matthew 7:7 Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you: For every one that asketh receiveth; and he that seeketh findeth; and to him that knocketh it shall be opened.

Jeremiah 32:27 Behold, I am the LORD, the God of all flesh: is there any thing too hard for me?

~Terri

Valentine’s Day

2010-02-14T20:04:00.001-06:00

Hello to all out there in internet land! Things have been going great for us. In fact I am trying to let my “germ guard” down a bit. (That is extremely rare for me.) We have been going out to functions. On Friday night we went out to eat and then Saturday we went to Lexis and Emeline’s Tae Kwon Do testing. They were testing for their Orange belts…:0). Ava does not know how to act in public and we usually get stares. She is not fond of people she doesn’t know. So all in all not much going on here and we LOVE it.

One thing that is a little hard is trying to discipline Miss Ava. She was “sick” for much of her life that she rarely could do much of anything to get herself in trouble. Well all that has changed and Brian and I find it challenging to teach her the good from the bad. I know all you Moms and Dads out there with special needs kids know exactly what we are going through. She needs to learn but wow is it tough on all of us. With that said she is full of spunk and vigor and we LOVE it even though it does test us at times…;)

Here is a few pictures of the girls Tae Kwon Do.

Emeline trying to break her board.

Lexis breaking her board!

It was a long day but we were very proud of both of them. It is wonderful doing “normal” family things.

So today was an opportunity to take some Valentine’s Day Pictures. Ava accepted the challenge gladly and Emeline was also game! Lexis well she did her own thing.

So as you can see she is doing well. Her weight is 31 pounds. I’m always telling her slowly but shirley! She will be going to a surgical check-up on the 23rd. I can’t wait for them to see how great she is doing again!!

I’ll leave you with a few Bible verse that sums up my thankfulness and Praise to You Lord….

1 Chronicles 29:11-13

"Yours, O LORD, is the greatness and the power
and the glory and the majesty and the splendor,
for everything in heaven and earth is yours.
Yours, O LORD, is the kingdom;
you are exalted as head over all.
Wealth and honor come from you;
you are the ruler of all things.
In your hands are strength and power
to exalt and give strength to all.
Now, our God, we give you thanks,
and praise your glorious name."

Jeremiah 29:11

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Thanks again for checking in on Ava. We are blessed to have you all in our lives to help us pray and magnify God in His healing hands!

~Terri

Attention CDH Parents….

2010-02-04T21:26:00.001-06:00

Good evening All! I was asked to pass along this survey to any and all of Congenital Diaphragmatic Hernia parents. It is a very brief survey that will help in a big way.

http://www.zoomerang.com/Survey/?p=WEB22A7LW6FTP2

Thanks in advance.

Ava is doing Awesome. I realized yesterday that her and I carried on a complete discussion. I am LOVING that she can finally verbalize her thoughts, wants and wishes!

Terri

A Little Piece of Happiness.

2010-01-29T19:45:00.001-06:00

Ava got into the band aids today and my what an artist she became. I had to catch it in video so you all could see her at work!

Photo and video editing at www.OneTrueMedia.com

All is well with Ava. She is growing into quite the little lady. I took her to an appointment last Tuesday in St. Louis to check on her arm. There are a few things we can do to help the appearance of her burn. While we were there I became very ill and we ended up leaving before her appointment was fully over. My Mother took me to the ER because I couldn’t get a handle on the pain in my lower right side and back. Long story short I had a kidney stone. I thought the pain was worse than being in labor. So glad that is over. I had to learn lots of patience that day…:) Bless my Mother’s heart for being put in that unpleasant situation. God showed Himself that day, in the fact that as soon as we left Ava’s appointment she fell fast asleep. She never saw me suffer and she was much less likely to have gotten any germs in the ER as my Mom held her the entire time. She then called my brother and he came and took her out of there. Thank God for Morphine! It helped me through that day.

We also went to a baby shower while visiting my sister in St. Louis. Ava had fun time. Here are a few pictures of her at the shower.

Thanks to my sister Amanda for taking this next picture of Ava and I!

And one of my favorites is this next one.

I also took some pictures of my brother’s girlfriend, Amber. I hope she doesn’t mind I post a few. I’m so excited my brother will experience parenthood. It is a wonderful thing!

They are naming him Christian. So of course I had to spell out his beautiful name in blocks!

This one is so precious.

So often we take our health and family for granted. Those are the two most important things in our life, besides our relationship with God, that matter so deeply. Tonight believe that God has a plan and ask Him to cleanse your heart so you can enjoy life to the fullest. He holds the future. Be strong enough to share with Him your deepest desires and your hard aches for He cares.

Thanks for supporting our family!

~Terri