Pulmonary and GI check ups

Hello everyone! Ava has been doing so well. She needed her annual pulmonary and GI checkups, so today was the day! I was glad Brian was able to go with us. She was also able to get her flu shot as well. We had her take it in the leg this year. Last year hr arm was sore for a week or longer. I don't know if they hit a nerve or what but she was not thrilled about getting one this year.

First thing of the day was the dreaded lung function test. She has to take a huge deep breath and then blow all the air out of her lungs. She did good in the end!

Ava keeping herself busy...

She is 5'6 and growing. She weighs 96 pounds. This is good for her. 

The Nurse Practitioner was so impressed with how Ava looked. She was shocked she had grown so much. Looking back from last year she became a little over 4 inches! That is crazy. She also praised us for being such great parents who advocate and always stay on top of things. It is nice when the healthcare team recognizes us. It's God's grace that Ava has come this far. We give Him the Praise! 

We also saw her GI doctor. She refilled her Prevacid and Zantac for reflux. She was happy that Ava liked school and that she was healthy. Having a boring check up was excellent. We will take boring ANY DAY!

Thanks for stopping by. We thank you for your love, support, and prayers.

Heart Catherization

Hello friends. Ava woke ready to tackle this procedure head on. She was super calm and was not worried at all. I, on the other hand, was worried but felt like it was in God's hands. We got to the hospital at about 6:30 am. She had her same silly attitude. You gotta love her joyous and carefree spirit. Her smile lights my heart. I felt a little calmer since she was in such a good mood. She brought her penguin along for the ride!

We got checked in and went to her room. She changed into the gown. She was still so calm. (Of Course, we have to get a selfie!) I love this little lady so much!

Calm and collected... so peaceful.

It's so hard to see your child go through tests, procedures, and surgeries. It just doesn't seem fair.

I had to take a couple deep breathes and pray that God would help us through all of this. Kate was Ava's nurse, and she was so gentle and kind. She tried two times very carefully to get an IV started, but with no luck. So then the anesthesiologist assistant, Andrew came in and wanted to look her over as well. He too couldn't seem to find one that would work so they decided to take her back and give her a little laughing gas to lessen the pain so that they could get one in. I asked if I could walk back with them and he agreed. (I've always walked her back.) She is older, but I felt I needed to say I love you to her just right before she went in the procedure room.

Next, we waited. My mother came, and that helped get my mind off of worrying. They gave us a pager and would text us updates. First one was, "We got access to the vein and have started the procedure." Then about an hour and a few minutes after we got another one saying, " We are finishing up, and she will be done soon. All went well."

When they strolled her in they were all saying how great she did. She did not look medicated, and I was a little confused. Katelyn, her NP, said that she did awesomely. They told us that they started by using laughing gas to get her sleepy and relaxed while they got her IV line in. She said Ava was giggling. (No surprise there!) They then asked her if she felt alright and she said she did. They asked her if she wanted any medicine and she said no that she was fine.

Going into this procedure, we had discussed with her that there were two options. Light sedation- doing the procedure with medicine to calm her and her other choice was heavy sedation- this meant doing it while being on the ventilator. We were persuading her to do the light sedation.

Well apparently to Ava there was a third option (God's calming medicine.) She did it with no sedation at all. I was just blown away that she did it with no drugs besides the first initial laughing gas. She got confused and thought that sedation meant that she would need to be on the ventilator and she told us that she wasn't interested in that. Leave it to Ava to come up with her own way of doing it.

God calmed her! We were so happy to hear the news from the doctor that her heart looked great and that all her pressures were in the normal ranges. She had no problems with her heart and no pulmonary hypertension. Praise the Lord! He gave us yet another miracle today.

So with no medicine used she was able to drink and eat right away. She got out of the bed and into the chair. It was under an hour after her heart cath that we were leaving the hospital. I was just so humbled and felt so blessed! Thank you for all your prayers. She does have to rest for a few days. But then she can return to normal activities.

I was able to ask for an image. This is Ava's beautiful, loving, caring and giving heart!

Grandma D came and brought her a little gift. That made her day. I'm so thankful for my mom!

She got the royal treatment with a ride to the car. She enjoyed that. She looks so grown up! Where did my baby girl go?

Her heart catheterization went much better than we expected. This little lady is as tough as they come. I'm so proud of her. She tackled it with such grace and was not intimidated by any of it. She remembered everything about the procedure and said that she could feel the line inside of her but that it didn't bother her at all. I'm so lucky to call her my daughter. I'm thrilled she sailed through this so good... thanks to God. He was indeed the real medicine. He gave her the peace that exceeded any medication the doctors could ever give her. (Less risk and fewer complications!) Praise His Name! We love and thank Him! Thanks again for your thoughts, well wishes, and prayers.

-Terri

How can she be 12?

Hello friends! I am a little late posting this, but we have been extra busy with Ava starting middle school. She loves it by the way. God has given her amazing teachers. I adore her IEP teacher. (She was the teacher that came to our house and helped Emeline when she was out of school for several weeks with her jaws wired shut...due to her jaw breaking.) Mrs. Vandenburg remembered Ava and her story. I was so thankful at an open house and relieved to know that she would be looking over Ava and helping her a lot.

Mrs. Vandenburg and Ava at Open House.

Mrs. Menke is her school nurse. I met her when Emeline was in middle school. We spoke to her during the open house. I knew that Ava would be in excellent hands. It turns out her, and I have a thing or two in common. She loves to write too! Many years ago, I had a strong passion for writing a book about Ava's journey. Ava was one at the time. I posted a note on my desk and said that "I will write a book one day." So here it is 11 years later, and during a text, I told her about Ava's blog. She read it and said, "You are a great writer. You should write a book." It was another sign that yes I should dust off those pages and try to get to it again. Ava has had so much happen in her life. A dream of mine would be to write a book and then get it made into a movie. It was neat that Mrs. Menke brought it up out of the blue. God sends us angels and her, and Mrs. Vandenberg are two of them!

But Jesus beheld them, and said unto them, With men this is impossible, but with God all things are possible. -Matthew 19:26

So for the purpose of this blog post. Ava turned TWELVE on August 31! It is just crazy to think about her birth and those first several days/weeks/months. I still am humbled by the fact that God sent us to the hospital and that led us to get Dr. Adzick the number one children's surgeon in the world. I mean that in itself is a miracle! Ava doesn't want to revisit her birth or look at the pictures. (I do every year as it keeps me thankful for all she went through and all that God brought our entire family through.)

Ava and I do one thing together every year on her birthday. We do a photo shoot. I love taking pictures, especially of her. It calms me and brings out my creative side. This "ritual" brings us together, and it helps me heal, and it bonds us as well. I think our Children's Hospital of Philadelphia visit this Summer made Ava realize just how blessed she is to be alive.

So here are a few of our favorites of that day. (Disclosure... this road is very secluded and does not get very much traffic.)

I used the road to symbolize her journey. 

We just had a lovely family Supper of homemade chicken Alfredo and breadsticks. (Her choice) Aunt Marsha made her mermaid cupcake birthday cake. So sweet!

So she was pretty surprised by her birthday present. I had to share this with you all. She is such a grateful young lady. And yes we got her a helmet. It goes 15 miles per hour. (On the sidewalks of course.) She was shocked, to say the least!

I picked this unique necklace out for her. It was exactly what I want her to know each and every day. She is ALL of these things and more!

"You Are Braver Than You Believe, Stronger than you seem, and Smarter than you think, and Loved more than you know. "

She has a helmet and wears it whenever she rides. Safety is key!

Something HUGE changed in her medical care on her birthday. Our "mycharts" an electronic health chart site had a drastic change with her age of 12. They want to "protect" the child by not allowing parents electronic records. It is, so that doctor and patient safety is number one. (AKA... child age 12 wants to be on birth control or has a drug issue they can talk about it without their parents knowing... bottom line. My summed up version.) I was so upset about this. I'm so used to getting online and looking at all her medical records and viewing all her tests. I could message her specialty doctors and get an immediate response. It was so easy to look over all her care in one place. Now I have a lot more "red tape" to cross. I am going to try and fight it. Ava saw me upset and said, "Mom I want you to have full access to my records. You save my life." That was sweet. Ava filled out the form for her to get her own my chart that way I can go on and see it there. It is just so much more work. I'm sorry, but in my opinion, 12 is a minor. I'm still fully responsible for her.

She has a heart catheterization on Monday, September 17th. She is very nervous about this. They really want her to have just enough sedation medicine so that she is responsive but not aware of what is going on. She was distraught when the nurse practitioner used the word awake to describe how she would be. Sedated is not awake. Her heart doctor led us to believe that she would be put under during the procedure. It was a shock. The sad thing about full sedation (She would be placed on the ventilator.) Her normal pressures will not be entirely accurate not breathing on her own. Also with the tube, it is longer recovery time and a lot more drugs and risks involved. We will make the final decision on Monday. This is the first real procedure that she will have done that is a big deal. Pray that the anesthesiologist will do what is best for her. We want no mistakes, and we want her to leave just as she came in.

The reason for the heart catheterization is to look at the right ventricular of her heart for hypertension. Her echo at CHOP over the Summer showed strain on the right side. They will insert a line in either her arm, neck or groin and go directly to her heart and measure her exact pressures. Pray that she finds peace in the decision she makes with the help of doctors and us. Brian will be with us, so that eases my mind so much. He is my rock. Thanks for stopping by and I will update you as soon as I can about her procedure! Much love to you all.

- Terri