Test Day

Hello everyone. Today was a very long day. Ava had a CT scan and an ultrasound to see how her diaphragm was holding up. She had some symptoms last year and then at the last appointment her x ray looked different to the ones in the past as I explained in the last post. Our goal is to be proactive with her situation... if that is possible. Congenital Diaphragmatic Hernia has been anything but true to itself. It keeps us on our toes to say the least! Ava did so well as always. She downed the contrast for her CT scan like it was water. I've had this stuff and it's not that good. She did have lemon flavoring added to make it taste a little better. She's so amazing!

Here she is in the CT scan. No fear at all. It took a big whopping 1:15 seconds.

She then went to the ultrasound room where a very nice lady and Dr. Kao. He remembered us both so well. He couldn't believe how tall she had gotten. (Everyone says this!!) We wanted to see how her diaphragm moved while she was breathing. I was shocked to find out that her left (patched) left side does not move at all when she takes a breath. The right side performs like a normal diaphragm. The doctor said this is typical for cdh kids. Of the 12 years I've known about CDH I'd never knew this. It goes to show you that we just keep learning about this birth defect at each and every visit.

So next we went and talked to her surgeon Dr, Shilyansky about the tests. He couldn't confirm anything as he is not a radiologist. He wants Dr. Kao to look through the scans and get his opinion. It is very hard to tell what everything is by just going through a CT scan fast... especially when you are looking at things that are in odd places like how Ava's body is. We know that her small bowel is on the right and her large bowel is on the left. Her large bowel goes all the way up to where the diaphragm patch is. Her spleen is laying oddly there as well.

We were able to see Dr. Fisher today. He is a plastic surgeon. I was so happy he was able to get us in on such short notice. We had so many questions about the muscle repair surgery. He was great at answering all of them. So basically if Ava had a large hole again in her diaphragm Dr. Shilyansky would go in and clean up her scar tissue. Then Dr. Fisher would take a side portion of her left muscle in her back and lay it down to form a new diaphragm. It is a very difficult and long surgery. It will be huge! Now if the hole is small they want to put in another patch. I'm hoping we won't need either. Brian and I just want to know our options when it comes to fixing her this time. Last time when she reherniated. (Her diaphragm failed) she was so sick that they just had to go in and save her as fast as possible and that meant using another Gortex patch. Ava has grown so much over the last few years that it's almost unbelievable. I worry the patch will break. And learning today that it also doesn't move with her disturbs me as well.

So we now wait for the official results. It should take a day or so. It's so tough being a parent and having to make such tough choices about your child. Choices that will affect the rest of her life. I do feel that God is with us every step of the way. I try not to ponder to much on the what if's. I think if it's bad we will deal with it on that day. One day at a time! Please keep Ava and our entire family in your prayers.

~Terri Helmick

Ava sees her Surgeon Dr. Shilyansky.

Hello Ava followers and friends! Ava had her yearly check up with her surgeon Dr. Shilyansky on Thursday. It was in a brand new building but still part of the hospital. We were a little confused where to go. A few people had to guide us along the way. Once we found the office they told us she had to go get an x ray so again we were wondering around trying to find it. Ava and I always seem to get turned around! BUT at last we found it. She's a pro at x rays. I can't even tell you how many she's had over her life, hundreds I'm sure!

We adore Dr. Shilyansky! Nine years ago when we met him it was due to Ava re herniating. (Her diaphragm failing.) She had flew in a helicopter and was in dire need of help. She was hanging onto life. It was one of the worst days of my life. She was 25 months old. So of course, every time we see him our hearts are just so thankful to him and his team. God did big miracles for her! He used to be a bit larger. He's gotten healthy and has taken up running like me. I had to get a picture of her and him together.

Ava is always a clown. She bounces off the walls waiting for the doctors to come in the room!

A doctor's appointment is always fun with me! Or at least that's what I think! Her dad was with Emeline at the Dentistry clinic there in Iowa City. It was a full day for sure!

Dr. Shilyansky came in and said, "She's not a baby anymore!" No she certainly isn't. They took her weight and height. She weighs 68 and she is just a touch under 5"2. (My height!) He was happy she was feeling great and looking so good and strong. He asked her how old she was... he couldn't believe she was 11! She told him that that she was in choir and that she did a few plays this Summer.

He then turned to her x ray. When he pulled it up I was a little taken back. He said that he doesn't know for sure what is in her left diaphragm area. There is some space which "could" indicate a possible hole or what looks to be bowel in her lung area. He did not say this... I can see this. He said that he is "concerned" about her left diaphragm and wants us to return in three months for another x ray. He will then access how it is and a CT scan would tell us a little more on what was actually happening. My heart fell. This was the first time since Ava has been able to understand and is old enough to see that her body is fragile... so to speak. Brian and I always fear the possibility of more issues or complications. It's just part of our thinking. She was born with a severe birth defect and no left side diaphragm. It's never been easy. Praise God He has helped her and all of us overcome so much so far. Dr. Shilyansky told us that she was older and stronger and if she needed surgery it would be more doable this time around. "Ha ha.. is that even possible?" Here is her x rays from last year and Thursdays. They look similar but it doesn't look good. We don't want another hole. A hole allows bowel to become obstructed and possibly her breathing to be compromised. It's a scary thing.

My wheels are turning fast as we drove home. Brian and I didn't discuss much as I knew it was a conversation to be had in secret, away from Ava. I don't want her to worry or be scared. I can't imagine her angle in all of this. She doesn't remember any of her surgeries or hospital stays that occurred when she was born and then up unto age 4. Brian and I remember them too clearly. 

Here is what my brain is thinking. We need to watch her closely. If she complains of stomach pain, has issues with passing stool or has trouble breathing this will alert us to the possibility that her diaphragm is in trouble. I'm having her chart her bowel movements. (Yep serious mom in overdrive here keeping her baby safe!) If she gets through the 3 months without issue we will get that x ray and if she needs the CT scan done we will get answers. "If" she needs surgery we want her to have the Latissimus dorsi muscle repair surgery. This is when they take would take the muscle from her side or back and use it as her diaphragm. This would be her own issue allowing it to grow and stretch with Ava. The Gortex patch does NOT grow with the person. It is made out of mesh. It usually produces scar tissue around it but in my mind is not stable and reliable. I don't want her to keep having repair surgeries. So my mission is to research and find out where we should go. We don't want to wait for an emergency to get this fixed if there truly is a hole again.

Here is a poster I made to explain the LATT procedure as described above.

I've found some x rays so you can see the progression of her x rays. Some I've used as teaching devises on my page so that is why there is information on them. If I have any CDH parents on here that have any advise please email me at mycdhlife@gmail.com. Any thoughts or words we would appreciate.

This is Ava's x ray at birth. Her stomach is right next to her heart and her organs are in her left chest area. I have it all marked.

Here is when she was 6. You can see her left diaphragm is really low.

Here she is at age 7. And again her diaphragm is still pretty low on the left side.

Now I will show you the last two years again. It becomes more scary. Things have moved up. I will go back through my x rays and find more and fill in these years but this is all of them I had on this computer right now.

So please if you would say prayers for Ava and our family. I will not let fear scare me or worry me. I will do just as I have before and do my research and prepare ourselves for what may lie ahead. I'm praying that nothing more happens. I can't be alarmed until God brings me to that place.

I'll leave you with a quote from a great pastor.
Your mind needs a break. It wasn’t meant to “go” all the time. The Scripture says in 1 Peter 5:7, “Cast all your care on Him.” You have to turn your cares over to God. You weren’t designed to carry that load. It’s going to frustrate you. Here’s the key: when you rest, God goes to work. ~Joel Osteen

God Bless each and every one of you!

~Terri Helmick