Sickness so soon

Hello friends! Ava is not feeling well again. A few days ago she started coughing. The school called yesterday to tell me she had a fever. I picked her up and felt sad for her.I started her Prednisolone yesterday as it tends to help her kick the cough much faster than anything. I took her to the doctor this morning. Ava was feeling so bad that she was shaking (chills and fever) then when she finally got warm (The nurse brought her a nice warm blanket.) she fell asleep on the examining table. Poor peanut... you know she is sick when she can't even smile. The doctor said her lungs didn't sound very good so she sent us to x rays at the hospital. I made her wear a mask... not just her spreading germs but I didn't want her picking up anything more.

I took a few quick pictures as she was getting her x rays. She is such a pro at this!

I got her antibiotic (Cefdinir) and some lunch. She fell asleep shortly after eating. I'm hoping we aren't looking at pneumonia. She has such a bad and constant cough. She will be missing out on her Christmas party at school. I do the school's yearbook so I will have to go and take pictures. I'll pick up her treats so hopefully that will make her feel better.

A few weeks ago I had an IEP meeting with her school. She is really struggling. It seems that they are moving much to fast for her. (2nd grade for ya!) She feels like she is drowning in learning it all. She was doing well in math but since they threw in money she is totally lost. We decided to add a math help along with her already special reading teacher. She gets one on one help. I hate seeing her struggle. She is on level 9 in reading and yet should be at a level 22 or 24 I think by now. I myself wasn't a great reader and school was often hard. We kept her back an extra year for fear of this... yet it is still happening. She is a hard worker for sure. We encourage her and let her know that everyone has to work extra hard at somethings. I wish there was an easy button!

We got the results from her Holter Monitor test. Her lowest heart rate was 41 and her high heart rate was 132. This is WAY lower than normal. Ava's normal would be from 70-160. They will retest her again in January. Her heart rate became normal 6 days after the use of the antibiotic, Zithromax. I highly think it was this drug that made her heart rate decrease. I just hope that it doesn't happen with another antibiotic. I'll be watching her close.

On a side note about me... I had my follow-up colonoscopy in December and they found a small polyp. It was no where near the size of my cancer polyp they found in December 2012. (Which was cancerous.) This one had no cancer in it but this "kind" of polyp sometimes does turn into cancer. The doctor did remove it and I will have another followup colonoscopy next year. I still believe if it wasn't for Ava and my heart for advocating the cancer could have spread and been a lot harder than surgery to contain it. I praise God each day. My words of wisdom.... if something doesn't "feel" right please go to the doctor and get checked. It could save your life! I'm very fortunate. Advocating for our children some how seems primal.... advocating for ourselves, different some how? It shouldn't be!

I just got the results of her x ray and her lungs were clear so that is GREAT! Now we just need to keep them that way. Thanks again for your love, support and prayers. I enjoy reading your comments on the carepage and all the support we get on the blog. It means so much to us that you care so deeply for little Ava and our family.

I will leave you with our family photos taken last Friday. How in the world does life pass by so quickly? Lexis is 16, Emeline is 14 and Ava is 8. We are so very Blessed.

This was a hairstyle that I did on Ava before she was sick. She is willing to let me try anything. I got this idea off the internet! How cute is this?

Have a VERY Merry Christmas everyone!

~Terri Helmick

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 

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

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

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

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

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

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

Bike accident + Ava = Emergency Room Visit

Good Afternoon family and friends! Yes you read that right. Last night Ava and Emeline were riding their bikes. (Remember Ava just learned to ride a bike by herself a few months ago.) She was going pretty fast and fell hard. Emeline being the loving sister she is carried her on her back all the way home. Thankfully they were only a few blocks from our house. When she came through the door I heard, "Mom Ava is hurt." I hate hearing those words.

Ava started crying hysterically and that made me very nervous. Her right knee was very bloody and her hands were scrapped and very swollen. The more I looked at her the more scraps I saw. I was very concerned as she was crying uncontrollably. I gave her ibuprofen and asked if she could take a couple deep breathes. She wasn't able to. She started coughing and choking. I was starting to feel scared for her. I was starting to feel a little light headed trying to figure this all out. I told her that if she couldn't take a deep breath and try to relax I would have to leave her with Emme and go outside. I felt as though I was going to pass out. She didn't want me to leave so she started to settle down. I then with Emme's help rinsed off her knee. It was multiple scraps but nothing too deep. However she couldn't walk on her leg. I asked her what hurt the worst. She said her fingers. She cut her three middle fingers pretty bad and they were swollen almost twice their size. Brian had come in and I told him what had happened and that I thought she should go to the emergency room for a couple xrays as she couldn't bend her knee or her fingers on her left hand. We packed her up in the Suburban and headed to the ER. She was doing a little better by now and was no longer crying.

When we went to the hospital we could see it was going to be a LONG wait. All the chairs were full. It wasn't something I was expecting. So after an hour and a half we finally saw a doctor. We went over what had happened and her health history. I could tell he was surprised that this little girl had been through so much. He pulled on her leg to check her knee and thought it wasn't broken. Her fingers he was concerned with so he ordered a few x rays.

Here is a few pictures we took while we were waiting. She was very cold, thus all the blankets.

We waited again for another several hours to find out the results... no broken bones!! I was so glad and relieved to hear this! The doctor told Ava she would be sore for a few days and to take some pain medicine to help with that. They also wrapped her fingers as they were sprained. Ava was so happy to be able to leave the hospital. I was too!!

We sure would appreciate some healing prayers for her. She's a tough little bird! She seems to think she is all grown up. She went to school today and did well. I sent Emme along to help her with anything she may need. She was thankful to have her big sister there today.

She came home and took a nap. That is NOT like little Ava. Her body needs extra rest. Thanks for all your love, prayers and support. They are greatly appreciated!

Again I thank God for these "normal" everyday scraps and bruises... she's an overcoming in all sense of the word!

~Terri

Gastroenterology Visit and Summer fun!

Hello Ava friends and followers. It’s been awhile since I last posted. And you know I always say no news is good news! Ava’s been having a great Summer.

We went to visit family in St. Louis a few weeks ago to celebrate the 4th of July. We always have such a wonderful time. We are blessed to have such an amazing, supportive and loving family! As you can see Ava had the most fun of all!

We also went to the beautiful Botanical gardens. They had a Lego display that Ava was excited to see. I am always thrilled to be able to take a few pictures of the beautiful flowers and nature. The girls all had a great time here.

Ava's also been going to Summer school and she loves it. She is a little behind in her reading and Math skills so we jumped at the opportunity to give her a little extra help. She goes Monday through Friday... two hours a day. She will start school on August 18th. It's coming soon!

Yesterday I took her to her GI doctor. Ava still struggles with acid reflux as most congenital diaphragmatic hernia children do. Hers is mostly silent but flairs up and makes her nauseous occasionally. She's on 30 mgs of Prevacid two times a day. If she needs something more she takes liquid Zantac. Dr. Ebach was happy with how Ava has been doing. We sure love Dr. Ebach!

Ava weighs 50 pounds exactly. Her height is 4' 5.1 inches. Let me tell you this little girl has been shooting up. Another 6 or so inches and she will be as tall as me! That's just craziness!

We couldn't be happier with how well Ava is doing. She has such a huge JOY for life. We thank God all the time for her health. Her scars are starting to bother her as we suspected one day they would. Some of them can be "fixed" to look a little better and we may look into it further if she chooses to be sad about them. I look at them as VICTORY marks. She's overcome so much. When I think back through the years and the many "tests" she's had to endure I can't help but ponder the Goodness of our Lord and Savior. He along with us needs Ava here. I can't wait to see how He uses her life!

Well thanks for all your prayers, love and support. We appreciate them all!

~Terri

"Living with Scars" Project

Hello Ava friends! Many of you know I started a face book page for parents with congenital diaphragmatic hernia survivors. Well today marks our 3rd Birthday! I am so excited as the page has over 1500 followers. I decided to start the “Living with Scars” project to educate people of congenital diaphragmatic hernias. I asked parents to take a picture of their child’s cdh scar and post it on face book. I also asked them to tell us what they thought about when they see their child’s scar. CDH is such a battle and still to this day the success rate is only 50/50. Not good odds. I’m thrilled though the page is doing so well. I attribute it to so many wonderful moms and dad that give what works for them to help others!

Here is Ava’s. I’m so proud of her!

What do I think about when I see my daughter's CDH scars?

I have a feeling of complete gratefulness that she is here with us today. I feel very BLESSED! It shows how hard she fought to survive this birth defect time and time again. I think of her courage and strength and how hard it must have been for her. It reminds me never to take life for granted, that we are never assured tomorrow. I know that her scars are just part of who she... a fighter in all sense of the word. I am SO proud to be her Mom!

A Diaphragmatic hernia is a birth defect in which there is an abnormal opening in the diaphragm allowing part or sometimes all of the organs from the belly (stomach, spleen, liver and intestines) to go up into the chest cavity, compromising the heart and lungs.

If you have a CDHer and want to get involved in this project please visit our page today!

https://www.facebook.com/raisingcdhkids

Ava’s been doing much better after her bout with the stomach flu. She did end up losing 3 pounds which is pretty drastic for her but we will gain it back slowly but surely.

Schools been going great and yesterday she came home with an AWARD. I was so happy for her. It is a gift certificate to Wendy’s signed by her principle and her teacher.

I also happen to grab the other two girls and get their picture taken as well. We’ve been so busy these days I don’t take near the amount of pictures we did before. We are still helping out with my sister’s twins so life has been a little nuts lately!

We are so proud of our girls!

Thanks again for dropping by… we appreciate all the support and prayers!

~Terri