Friday, January 16, 2015

Happy 2015!

Hello Ava followers! We had a big day of Iowa City appointments and tests! Ava first saw Dr. Reinking her cardiologist. We love him! (It's a bonus that he's easy on the eyes.) He listens to Ava and me. He also realized that as I told him in November Ava was NOT her normal self as he could clearly see today. She is a wild child! She speaks her mind and has a hard time sitting still. It was good to take her to an appointment HEALTHY so they can see her in her good times too! The results of the Heart Holter monitor in November showed that her heart was strong and healthy. It did bring concen to him that her heart rate dropped to 42 beats per minute while she slept. He was happy to hear that her heart rate returned to normal shortly after the medicine (Zithromax) left her system. I strongly feel this was the reason for her slowed heart rate.

Dr. Reinking checking her pulse. She laughed at him. He commented that he loved her penguin socks.

She is growing like a weed. She weighs 54 pounds and her height is 4 feet 6 inches.

She got another EKG while there... she's a pro at this!

He thought we could skip doing another holter test as she seemed back to normal but I told him I'd really like to do one to get her real baseline "normal" heart rate. He will be shocked at the difference I know it! Here is how different she was... her appointment in November when she was having the lower heart rate was 62 in the office. Today she was 92. EVERYTHING she was doing was the same. She was just sitting on the table. This was NOT normal for her and VERY scary for me. She's always had a SUPER high heart rate.

So he absolutely, with no hesitation agreed that we could do the test. Here is her getting hooked up in case you aren't aware of what a Holter test consists of... she wears this for an entire 24 hours. It hooks to her jeans. It's very light weight and easy to wear. There is five wires that connect to the monitor. She is supposed to do everything as she normally would. I guess playing "Just Dance" with Emeline is okay then.... that's what they are doing now!

Here is Ava getting her heart holter monitor on today.

We then had her Pulmonary function test are a group of tests that measure how well the lungs take in and release air. and how well they move gasses such as oxygen from the atmosphere into the body's circulation. Ava is still "learning" how to do this test. It's tough on her. Today during the test Ava got really discouraged. She started to cry. We tried to tell her she was doing a wonderful job and that it was just a test to see how she could do but if she didn't feel like she "could" do the test that was okay too. It's not normal to take a deep breath in then blow all the air out of your lungs for 8 seconds then take a deep breath in. She will get better with age and practice. The test shows that her lungs are pretty well for all she's been through. Sadly there isn't a way to separate the lungs and single on out from the other.

Here was part of the test. As you can see she is still learning...

Ava waiting patiently... LOVE her ipad in these times!

We saw a wonderful nurse practitioner named Samantha Lee from Pulmonology today. I really liked her! Ava was so tired of being there so she was being onry. We discussed possibly doing a ventilation-perfusion (VQ) scan. It is a nuclear scan that uses radioactive material to examine airflow (ventilation) and blood flow (perfusion) in the lungs. I was always a little scared to know exactly how bad Ava's left lung was but now I think that knowing is a good thing PLUS we can have a baseline because... could it possibly get better or worse? That's what I'd like to know. It will not change Ava's care or medication but it will give us more answers. She was going to check on it and let me know soon. We set up another followup in 6 months. All in all it was a great day.

Going there (to the children's hospital) makes me feel such gratitude. SItting there waiting... brings back so many bad memories. I see child after child very sick and some the way Ava was... hanging onto life in some ways. Ava is such a Miracle and God is to be given ALL the glory. We've been so BLESSED. I try not to take it for granted yet not dwell on the struggles. I went back through her blog and want you to see how AMAZING GOD IS! This was just 6 year ago to the day. We were dealing with an open stomach AT HOME and IV and g tube feeds. We were afraid for her future as she wasn't getting well but stuck in sickness. Her brain stopped learning new things. Her full focus was on getting better... but she STILL could SMILE! How did we do it?? She's come so far!

She's a trouper! We pray that 2015 is healthy and she will continue to thrive! We cherish your love, support and prayers. Here is a few pictures I took of her and her sisters not long ago. Life is a challenge sometimes but worth EVERY second! All of our girls are such gifts from God. I'm so proud of all of them!

Love and cherish all the time you have here.... God has special plans for ALL of us!

~Terri Helmick

Thursday, December 18, 2014

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

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!


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.


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