Thursday, October 23, 2014

Life changes

Hello Ava followers! I'm sorry it's been awhile since an update. Things have been a little crazy around here lately. We did have several good things happen with Ava that I did need to update on but life has just been so hectic I haven't had time. My grandfather passed away and that threw us all. He was healthy and active so it came as a surprise that he got a flu shot and then a week later developed double pneumonia then was put into the ICU at our local hospital and a week and a half late he died. It has been tough to say the least. Ava was very sad over the loss of her great grandfather. He would always ask for many hugs as he loved her so much and always bragged about Ava and the Miracle she is to all he knew. We will miss him greatly.

Here is a picture of Ava and her great grandpa Delbert. "We will see you again Grandpa!"


Last month Children's Hospital of Philadelphia went "on the road" to Chicago for a reunion. I thought it was a great opportunity for us to see them all again. (It's so hard to travel all the way to CHOP for their Summer reunions there.) This was a great option for our family. They held it at the Chicago Zoo. What a great time we had. Ava was so happy to be able to see her surgeon Dr. Scott Adzick. I am always so thankful and in awe of him for all he does to help families! 

It's so nice meeting other families who struggled, for we know we aren't alone. It's so easy to connect and understand each other!



Here is Ava with Dr. Adzick.


Our family minus Lexis. She had other plans that day. We love Dr. Adzick.




Ava also had her yearly check-up with Surgery. They were thrilled with how well she is doing. Her weight was 51 pounds and her height was 4' 5.7". She is growing great.

(Doctor visit stats- Blood Pressure was 112/60. Pulse 86 | Temperature was 98.6 °F | Respiratory rate  24 |  BMI 12.65 kg/m2)

Her reflux is staying about the same. I've been really stressing for her to avoid people with a cough and to keep her hands away from her mouth when she is at school. Last cold she had in August she stayed home a few days then I sent her back to school. She didn't get any worse so to me that was big!

Josh her nurse practitioner was so happy to see her. Dr. Shilyansky was busy so we didn't get to see him. I was a little disappointed but I know how it goes. I remember when she saw him often as she was very sick. God has been good!




Here is Ava and I... on rare occasions Brian comes with us to her appointments in Iowa City. I always make him take a picture of us. People tell us we look alike...



Here is Ava's lung X rays. As you can see her left side doesn't look like the right. She was born with no left diaphragm at all. As you can see her stomach is the air pocket right under her diaphragm. It all looks... well expected of a diaphragmatic hernia survivor. I made this to help show other CDH parents but thought you guys might like to see her x rays as well.


They are still in the process of remodeling the children's hospital. We take a minute and get pictures of the progress. It should be something amazing when completed. We are hoping Ava never gets to use it!


Thanks so much for taking time out of your day to read about little Ava. We enjoy allowing you along on this journey. She is pretty excited about Halloween. I made her an Elsa costume. It's quite fitting I think.... Elsa had something "wrong" with her too and what did she did? She accepted it and embraced her difference. Ava does this every single say and we LOVE her for it! Keep the Faith! We love and thank you for praying and supporting our little girl.

~Terri L. Helmick

Sunday, August 31, 2014

Happy 8th Birthday Ava!

Hello Ava followers! I can't believe Ava turns 8 today.... where has the time gone? I know many of you have been with us from our very first days. My first blogging happened on Carepages. (And still do!) So much has happened in her life! We knew of Ava's diaphragmatic hernia when she was just 19 weeks gestation. Doctor here in Iowa gave us literally no hope. (Odd fact... there was no surgeon at Iowa Children's Hospital at the time of Ava's birth.) We were so glad God led us to Children's Hospital of Philadelphia. I remember telling Brian that I was going to do everything in my ability to try and save her. I knew that half of all babies born with CDH passed away. We prayed so much for her. We had so much support from family and friends. When we decided to move our family 16 plus hours from our home that we were trusting God and that there was no way we could even look back and wished we could have done more. We did all the right things. CHOP was leading the research in diaphragmatic hernia care. It wasn't a fluke that He gave us the top surgeon in the world. No it was God's plan for Ava's life!

It always shakes me when her birthday rolls around. Last night tears came to my eyes just thinking about the struggle that we faced... and the pain and tolerance Ava endured.


I always take pictures of the girls on her birthday. Here are a few we took this morning. She's our little Miracle!







Thanks for all your love, prayers and support!

~Terri

Thursday, August 28, 2014

Cold... we don't like you!

Good morning Ava fans! So Ava wasn't even in school a full week when she got a cold. (Her symptoms started Thursday.... runny nose, and scratchy throat. Then Sunday she started coughing. A LOT!) I took her to the doctor on Monday. She had a really bad ear infection but the doctor said her lungs sounded clear. I started her Prednisone as soon as the coughing began as her lung doctor suggests plus albuterol treatments or inhalers. She didn't improve much and stayed home Monday and Tuesday from school... all the while coughing and coughing. Last night she complained that her lungs felt tight and that it hurt to breathe. I always feel so bad for her as I don't know this feeling and can not relate. I kept her in her "sick" bed. (Her bed in our room she sleeps in when she isn't feeling well.) I hooked up the monitor and her oxygen levels were okay all night. She ranged from 94-98. She did have a few night coughing spells but overall she did much better last night than the nights before.

So we discussed school yesterday and I asked her if we could try to send her back tomorrow and see how she would do. It was like a foreign language to her. We always keep her home until she gets better... however I'm afraid as she gets older and 2nd grade moves much faster that she will fall behind very quickly. I went in this morning and talked to her teacher and gave her "the list" of things to look out for and to have her call me if any concerns arise.

My fear is that already being down with a cold she will pick up something else. I just want to see her get better and do well in school. This is just a trial run. If it doesn't work we will have to go back to keeping her home until the cold passes. She can tell me now how she is feeling so that is comforting. I told her I would pick her up for lunch and get in a breathing treatment. She was glad to hear that.

Please pray that this all works out and she gets over this cold. It seems the longer she is out of school the worse it is to get her to go back. She is a lot stronger than she used to be!

Here is Ava doing a breathing treatment. We switch off with treatments and inhalers as she is getting older. Last night she was watching a movie on my laptop and didn't want to hold it so therefore the mask was her friend!



Thanks for thinking of us.

~The Helmick

Friday, August 22, 2014

More Pictures!

Hello Ava followers! I know how much you all love pictures. There was an awesome photographer at the Make A Wish reunion last Saturday so I thought I'd share her pictures with you all. We rarely ever get a family picture because... well I'm always the one behind the camera. So a tripod is the last thing from my mind. I was so happy to have these wonderful pictures of our family!

Brandy Goldenberg Photography in West Des Moines captured the images her facebook page facebook.com/brandygoldenbergphotography http://www.brandygoldenbergphotography.com/






 Thanks again to Brandy Goldenberg Photography! We love these pictures!

Ava's first week of school went really well. Today though she woke to complain of a sore throat. I'm hoping she doesn't get a cold. She asked if she could stay home from school but her dad urged her to go and promised we would take her to lunch... her choice! She got home from school and was glad she went. 

Thanks for all your thoughts, support and prayers! We love you all. Ava's birthday is coming FAST. In just 9 short days she will be 8! So happy/glad/relieved that it isn't 8 years ago now.

~Terri

Monday, August 18, 2014

Make a Wish Reunion and Back to School!

Hello Ava family and friends! We went to the Iowa Make a Wish reunion a few days ago. Our family had a great time. First there was a picnic. The kids could participate in wiffle ball, bean bag toss and face painting. Kona Ice was there for the kids. Texas Roadhouse catered a delicious meal. After the picnic we were given suite passes to the Iowa Cubs game across the street. Wow was that ever nice!

Here are a few pictures of the picnic and game.







Cubbie came to our suite to say hello. What a fun evening!


Thanks again to the Make a Wish of Iowa for making our family feel special yet once again!

Back to School

I think Ava was ready to go back to school today. It's always a little never wracking for me. It is still a bit difficult for me with all her medical history. I will admit it gets easier with time. I met her teacher and right away knew she was a perfect fit for Ava.



So we will see how her day goes. It seemed like a little easier transition since she just got out of summer school for her to jump back in. Last year I think she cried a lit after I left so I'm hoping for no tears this year. 

Thanks again for checking in with Ava. We have been so blessed!

~Terri