Ava is G-tube FREE!

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…

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…

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