Attentions CDH Parents.....

I need your help. I know I have a lot of Congenital Diaphragmatic Hernia parents that follow Ava's blog. I have created a poll at the right of the blog. If you are a cdh parent PLEASE take the poll. I am trying to figure out how common it is for our CDH children to reherniate. (For their patches to break or for the muscle to separate and allow things to move back up.)If you have anything further to add or want to share your rehernitaion story with me please email me at mycdhlife@gmail.com Thanks in advance!

In October it will be a year since all Ava's reherniations problems began. I am still stuck with thinking how will this patch be different. They were going to use her own muscle from her sides ands back but they discovered she was so tiny that was just not possible. I was heart broken to hear that they had to place another Gortex patch back inside her to cover the hole.

Ava's reherniation was unique in that her intestines somehow ingested the patch and tried to expel them through her small bowel. And what a great plan they had, except for the fact that they caused a total bowel obstruction when they got stuck. Heh could life ever be easy? We nearly lost her.

We live each day full of wonder and admiration of what this life is all about. Ava and all of the people in my life are gifts from God. We should never take one breath for granted.

Ava's cold is much better today. Still a little runny nose but nothing big. She did throw up the other day but nothing else came of it. So I'm happy to report all is great here at the Helmick house. Thanks for your continued prayers.

~Terri

This isn’t Cold season.

Hello everyone! As you see in the title Ava caught a cold. She has a really runny nose. It doesn’t seem to be slowing her down though. Emeline probably brought it home from summer school. Emeline’s been battling this cold for about 5 days now. She coughs a lot.  I’m praying Ava does get too bad. Poor Lexis has it too. Her and Ava got it the same day. She said “Mom I feel miserable…take me to the doctor.” I told her that Ava had it too. The doctor can’t do much unless you have a fever and show other symptoms. If they get worse they always have breathing treatments…so far we are not there.

I took Ava to visit her new Family Practice doctor on Monday. I was very glad they were able to get us right back. I just can’t have her near sick people, especially with her central line. Speaking of her line, we don’t use it but I still have to flush it once a day. I use a Saline then a Heperin. The plan is to have it removed at the end of August. (Which is NEXT month.) I would like to keep it a wee bit longer perhaps September. Here is my reasoning……I in no way want to believe or think about her having additional problems BUT by her past history it does happen. She hates the hospital. We can avoid the hospital if she keeps the line. I would be able to give her nutrition through her veins. Last time her problems started three months after surgery. The good thing with “this” last surgery then all the ones before is that she was able to eat by mouth so things were already moving through….after surgery she picked right back up to eating. I have to be on guard every second. Oh how I PRAY this is it for her and she is now on the road to recovery for good. We know that having a foreign object in our bodies (her gortex patch) can lead to rejection. It is still hard to think that her body literally “ate” the first patch and got terribly stuck causing a total bowel obstruction. How does that happen?

This is Miss Ava and Dr. DeLarosa. She explained to me that she would love to see Ava for all the minor kid stuff but she would send her to Iowa City if anything serious came up. I was thinking… “I know when things are serious and I wouldn’t come here.” I hope I wasn’t too much for her. I have heard I get over bearing sometimes…..naaaa not me?We just need a doctor local to help in the small things. She is a typical kid, in that she gets colds and scraps and broken bones. Okay let’s scratch the last one! Don’t need that.

Ava getting her STICKERS for a job well done! We will be back for her 3 year check very soon! Oh Hannah the nurse is in this picture. I really like her!

Sunday the whole family went out to my parents house. We love to walk down and see the horses. They are such beautiful animals. Lexis and Emeline got to ride one of the last week. They LOVED it!

See how gorgeous the sky was that day? You just have to step back and thank God for all that beauty!

This outfit was picked out by Ava herself….perhaps she felt a little patriotic?

She is not afraid of the horses at all. They are really large too. I remember one time they got out of the fence and was in my parents yard. We were supposed to get a bucket with some food in it and lead them back to their field…..you don’t realize how huge they are until you are standing next to them with nothing in between you and them!

Ava likes to make me nervous. She has been trying to jump off stairs. See?

I made home made ice-cream a few days ago and this is what Miss Thing did with the lid……. “Yep this is my child! So happy she loves being a kid!”

Thanks for stopping by and please continue to keep praying for Ava’s healing and her Total recovery. We know that God is working it all out.

For those of you that need to relaxation and peace in your lives…I’d love for you to check out my new Photography blog. I started because I am finally coming out of the fog and truly seeing life for the first time. God has created a beautiful world and I love to capture it through my eyes. It is called “Capturing a Moment in Time.”  The web address is http://knowingtruebeauty.blogspot.com Please look around and enjoy!

~Terri

Beautiful Healthy Eyes!

Hello Ava followers! I hope you all all doing well. I have been worried for a while now about Ava’s vision. She watches the TV way too close. I’m constantly telling her to sit back. I knew all too well this is a sign that may need glasses. Her older sister Lexis got her first pair of glasses at two and a half. I was putting it off because her health always seems more important than her eyes. SO I finally got her in to the eye doctor AND I was so relieved when after he examined her he looked at me and said, “Ava you have beautiful, healthy eyes. And your vision is totally normal.” Now did I hear him correctly. “Normal?” Funny how I never seem to hear those two words ever used in the same sentence…..Ava and Normal. I was nearly in tears. God spared her eyes. What a huge blessing! The doctor was impressed at how she sat there on my lap very still. He mentioned she was his best two year old patient EVER! I am not surprised. He was the only doctor that did not physically hurt her. (Pretty sad right?) She did not enjoy getting her eyes dilated but the there were no tears.

I got a call this week from our Nurse Practioner, he told me that her Albuterman (I know I butchered the spelling) levels were a little low with the blood test on Monday. The funny thing was that about 5 days before I had been thinking I wanted her to gain more weight so I had started to increase her feeds at night. I had jumped on it before the doctors. (Anyone shocked?) So she has been getting 3 cans of Complete Pediatric a night. (750 calories) That is 75% of of the nutrition she needs in one day. It seems she has a really hard time of putting weight on. This is nothing new however. Miss Ava has been like this her entire life…..it’s just now we can pump her up at night! She is up to….ready for this? 75 ml’s an hour! I increase it slowly and so far she doesn’t seem to notice. For all those that can remember….I couldn’t increase her feeds past 40 ml’s before this last surgery. That is almost double! I am so happy with her overall health. She is coming along far better than I ever dreamed!

Here are a few pictures of the last few days.

I have to say thank you to Shera for this gorgeous hat she sent Ava the other day. It is so cute on her. Thanks for thinking and praying for our little Princess. You blessed my day!

I love this picture of Ava and my Mother. “Mom you are still so beautiful and I love you! I will cherish this picture forever!”

Today we went to the Water/Pond place her in our town. I was truly taken back at the beauty that surrounded us. You KNOW I had my camera and here are my favorite shots of Miss Ava.

This pond had huge fish in it. One was about 3 feet long! I had never seen a pond fish that big! Ava loved it.

I even got in a few pictures!

What a gift. “Lord thank you for the gorgeous plant around us. It is through nature we see how your love abounds. Thank you for making Ava so full of life and for continuing to heal her body. We love and praise your name.”

Thanks for checking in on Ava. She continues to amaze us.

~Terri

All about the girls and Daddy’s girl.

We are just loving life! We are extremely blessed with God’s goodness. Ava’s body is healing and she is just so happy. I feel like I keep repeating myself……”She is so full of life!” I have to sit back and take it all in. If you would have told me just a month ago (We were sitting in the hospital at this time.) that Ava would be hopping, jumping, running, and dancing, I probably would have laughed at you. Miracles are just around the corner for ALL of us if we just “dare” to believe.

A few days ago I took the girls to a very large nature park around here called, Starrs Cave. I loved going there as a little girl. Ava loved to skip down the trails with her big sisters.

My beautiful girls walking the long bridge to the Cave.

 

And who turns around to see if I am coming?

Carefully looking in the cave.

This is my favorite picture of the day!

Okay this is a great one too. I felt like Heaven was shining a light upon them this day.

AND of course she HAD to see the water with her sisters! They are great helpers.

We had a great day!

Today was a gorgeous day here in Iowa. We got some Daddy’s girl pictures at the park. You can tell the love these two have for each other.

Ava is not one bit scared of this lake. She loves to walk right by the water. It makes for beautiful pictures for Mommy.

Ava taking time to smell the flowers!

We received a wonderful box of goodies today. Thank you Julie! Ava was floored by ALL the Teletubbies items. She won’t put any of the things down. She drags the basket around. She loves everything. The books, the stuffed Teletubbies, the cup,  the videos and all the toys. Here is how happy she was….

Julie you lit up her day and ours too. We love it when she is overjoyed. We appreciate giving all these thing to Ava and the girls. THANK YOU!

I want to thank you all for your love and support. We have so many followers and we owe her health to all your prayers. God hears and He is near. God be with you all!

~The Helmick’s

“Fun in the Sun!”

Ava is just doing fabulous. I paused a few minutes today and just prayed and thanked God with ALL my heart for how well things are going. Ava is the best health ever. She is gaining weight and truly having no pain or discomfort at all. She is always dancing or singing…..and smiling! Tears filled my eyes as I thanked Him…..I am just so happy.

Today I spent pressure washing the house as we are getting ready to paint it. We have done it before with the help of my Mom and his but this time it will probably me and Brian. I don’t mind. I love to paint. Anyway while I did this the girls were taking turns carrying Ava around the pool. She was ALL smiles and giggles.

 

She also had her own pool.

She has been learning a whole bunch of words. Her speech is improving so much. A great sign that things are healing and she is moving onto bigger and better thing.

Here are a few pictures over the last few days.

This was Thursday night…the last night of TPN!!! No more feeds through her Hickman (central) line. (The white bag is tpn and the bag with the blue lid is her g tube feeds. Which she gets 500 ml’s a night.)

 

Wagon ride with Grandpa.

Big smiles….so precious and so blessed!

A walk with grandpa.

Dancing girl.

And as the sun goes down tonight and each night please tell God what a blessing your life has been. We learn and grow through trying times in our lives. As I took this picture a few nights ago I stood in “Awe” of God wonders. He did this for us!

God bless you all as you walk in His light. Ava is proof there are miracles and “Angels” among us!

~Terri Helmick