Monday, November 24, 2014

Heart update

Hello Ava friends and followers! Thanks for all the prayers. 

Ava is feeling better! We are still waiting on the holter monitoring test results but her blood work came back "normal". We (our local doctor and I) strongly feel that the antibiotic Zithromax caused this decrease in her heart rate.  It lowered her heart rate 20-40 beats slower per minute. Zithromax stays in your system for about 5 days after you take the last pill. Her dose was 250 mgs, one pill a day for 5 days. She has been on this drug before and never had a problem. It boggles my mind... this antibiotic is a really good drug to help clear infections out of Ava's lungs. I can be thankful that during this last cold she wasn't that bad. If her lungs would have been weak and she would have had this low heart rate things could have gotten bad really fast. 

I have to stay on top of things and I thank God that He gives us tools like monitors and Mother's intuition to know that... well things just aren't right! It is not like Ava to lay around and fall asleep. Our Ava is always hopping and bopping and driving us nuts. She sings! She dances! She is an active, happy girl! We are happy to see her active again!

We really appreciate all your love, support and prayers!

~Terri 

Friday, November 21, 2014

A Change of Heart

Hello Ava friends! So as you know I don't usually post unless something is "up". Well Ava is giving us a run for our minds lately. Last Thursday she came running into my room saying her heart hurt bad and she thought she was having a heart attack. I told her to take some deep breaths. She started crying but then I reassured her that she was going to be okay. She did what I said while I hooked her up to her pulse oximeter machine. Her heart rate was high which was normal for the "panic" mode she was in. Her oxygen levels were 98-100. I asked her to explain to me the pain. She said it was a sharp pain and got worse as she breathed. I gave her a dose of her reflux medicines thinking that it could possible be reflux. (In the past she has silent reflux so she rarely has symptoms or can feel the burning.) Giving her the medicine seemed to help. That night she began to run a fever and had a slight cough. (101.8) She said she was so tired at school and almost fell asleep.

 Friday I took her to the doctor and she said that her right lung (her good lung) was slightly diminished. She ordered chest x rays and gave us Zithromax to start. (It is an antibiotic.) The x rays came back fine which made me feel SO relieved. She started feeling better within a few days. I was keeping her up in the sick bed, next to our bed, with the pulse oximeter. (I can sleep better this way.)

On Tuesday night her heart rate dropped below 50 while she was sleeping. Her alarm sounded. I wasn't too concerned as I thought she was just extra tired. I did schedule and appointment the next morning with our local doctor because she seemed worse and I wanted to ask about the heart rate. (Ava has ALWAYS been on the extra high side of normal.) The doctor was REALLY concerned. She told me that this heart rate was way too low for Ava or anyone. she wondered if it was a bad side effect of the Zithromax.

Then on Wednesday her heart rate dropped to 44. I went over to her and checked her pulse myself. I got 38 beats a minute and they were very shallow. I grew concerned. I woke her and the heart rate got better. I then let her go back to sleep but it continued to get lower and lower.

I called our local doctor on Thursday morning. She suggested I take her to her cardiologist (She was discharged from him two years ago.) So I called University of Iowa Children's Hospital. I talked with her nurse practitioner from the surgery department. He suggested I make an appointment with Cardiology soon. God helped us get in, Someone had just canceled for the next day. Wow that was a miracle all in itself. Thursday night even before she was asleep her heart rate was in the low 60's. I knew I had a long night of beeping ahead of me. She did drop quite fast and 10 minutes after she fell asleep her alarm was going off. (It goes off when she drops below 50.) She dropped to 47 but hung in the upper 40's lower 50 most of the night.

So we woke early and headed to the doctors. They did blood pressures on both her legs and on her left arm. Next they did an electrocardiogram (EKG) He said it all looked normal. He listened to her and did an overall check. He didn't see any swelling of anything else associated with heart failure. He suspects that she picked up a virus that could have caused her heart to function this way. I told him I was concerned as this is NOT like Ava at all. Her heart rate has always been high. (Most times I would hook her up to the pulse oximeter I would have to increase the heart rate setting so it wouldn't alarm. He agreed that this was very unusual for her. He ordered a Holter monitor. This will allow them to monitor her heart and see the variations of the beats and determine if there is a problem.

The thing about Ava and I that are similar. No matter what is going on with us we smile and laugh. It is just who we are. We've got to be almost dead in order for us not to have a happy face. Here are a few pictures of her appointment today. This is the electrocardiogram.


The nurse asked if she wanted to remove all the stickers herself. Of course she did!!

When we came home she was excited to show her Dad and sisters her new hook-up. Lexis told her she was now a robot! There are 5 leads and the monitor itself is attached to her jeans. 


Her stomach has been through so much... yet she is proud. I love this about her and hope this never changes.


When we got home I messaged my sister Amanda, she's been a nurse for a long time now and decided to go back to school to become a nurse practitioner. She was concerned with Ava and asked if they had run any blood tests. I was going to ask this but with all the questions I had I forgot to ask that one. I called our local doctor here in town and asked if she would mind ordering the tests. We wanted to check her electrolytes, potassium and magnesium levels. She was happy to allow us to do this. So I took Ava out for the test. I told her there was one more test of the day. I knew if I told her what it was she would start to panic and worry. So out we went. When it was time the lady called us back. Ava was all smiling and talking with the lady. She sat down in the chair and the lady kept talking but began putting the tight elastic around her arm to draw her blood. Ava pulled her arm away and said, "What are you doing?" I wish I had a video recording of this. I felt so bad for her but it was so funny. I sat beside her and while she was in my arms I explained the last test was blood work. She started crying. She was upset with me for not telling her. The lady did an awesome job and with one small stick and 4 vials later she was done. I know it was the right decision not telling her. So now we have to wait to see what comes back.

She is getting so grown up. She can talk to the doctor herself. I can't help looking back over the years and seeing how she interacted with all her doctors and nurses.

I thought you might like to see her in her Elsa costume. (I hand made this just for her.) This is Ava at school. This was her first year she didn't have a cold and could participate in the Halloween parade. I dressed up as a snowwoman. Not quite Olaf, huh? :)


Please pray this is something simple and perhaps just a virus doing strange things to her and that she will get over this as soon as it started. It's not that common that diaphragmatic hernia survivors have heart defects years later if they didn't have a heart issue at the start or after the pulmonary hypertension resolved due to the cdh. This is bizarre to me. Thanks for all your love, support and prayers. God hears our prayers and knows how much we all love and care for Ava.

~Terri


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