Friday, February 2, 2018

All things work together for the Good.

Hello friends and family. Ava is doing GREAT wearing her back brace for 14 hours a day. She usually puts it on at 9pm and tries to wear it all night. Most of the time she wears it until 7 am. Then she wears it a few hours after she gets home from school. She does on occasion take it off at night because she cant sleep and then she wear it to school to get in her time. She never complains. She's so strong and brave.

Ava had a follow up appointment with Dr. Shilyansky (her surgeon) yesterday. We've been concerned about the area around the place her patch was placed in 2008. (Crazy enough her first patch placed at birth was somehow digested by her small bowel when she was 25 months old. And that spun a ton of life and death ordeals for her for several years.)

She's now 5'3.66" (98th percentile)
Weight 91lb 7.9 oz (61 percentile)
BMI- 15.87 (20th percentile)

Blood pressure was 110/65.... her pulse was 108... respiration 18


We are loving Children's new hospital. Everything is so happy and positive. Most of the decorations have to do with corn and farm animals. (I guess that's about all we have here in Iowa!) This amazing lady has been doing Ava's x rays since she was 2. We love her!



She was nearly as tall as the lady!!


 The two spots we are concerned about is the "bubbles" on the left side right under her heart. The first is her stomach and the one near the side is her large colon. (Ava had to have her colon moved in 2008. So where we normally have small intestines on top and large on the bottom... not with Ava. She has her small intestines on her right side and her large on the left side.) We also know that her spleen is on her left side near the left wall, laying almost perpendicular.


I have to always refer to this Bible verse. It's helped us through so many hard times. God is ALWAYS here with us... good times and bad ones alike. I love this little lady!!

I talked to Ava on the drive home and explained how important it is that she lets us know if she isn't feeling well. I think hearing the words from her surgeon helped her understand how important it is to be aware if something doesn't feel right. Signs of reherniation are respiratory stress, abdominal pain/distention or vomiting. 



"And we know that all things work together for good to them that love God, to them who are the called according to his purpose." Romans 8:28
So yesterday we were finally told (Something I already suspected for about a year.) that the spots on the x ray near her left diaphragm are her stomach and colon. Dr. S is not sure where the patch is. He thinks she may have a hole and her intestines are just there blocking it. Sadly the surgery is so massive that we are going to wait until she is showing sign before we proceed. I'm truly giving this to God. Pray for her continued health. No one is assured tomorrow. It makes life so much more precious. Be in the moment family and friends. I LOVE you all and are so thankful you are all in my life. 




-Terri





Wednesday, January 10, 2018

Scoliosis Brace

Hello Ava followers! Ava's been doing so well. Monday Brian and I took her to Iowa City to get her back brace. As I told you last post she was diagnosed with a 26% curve. She was prescribed a brace. She got to pick out the design on it. It's purple with butterflies!

We went to the Prosthetics people to pick it up. This nice man named Evan helped to get it fitted for Ava. He had to trim a little of the brace under her arm area. He also had to heat up the area around her hip as it was pushing in and causing pain. After that he asked if she just wear it for 15 minutes and sit walk, stand and lay down in the brace to see if there were any other areas that were concerning to us. Nope it went fine. I asked her how it feels and she says it's "okay" and "hard to breath in it". Yes she's right!

This is the very first picture of her wearing the brace. I can't believe how tall she is getting.


The "not so sure" look here in her eyes. What a sweetheart!


Her curve is to the left that is why the sling part is on the left side and the right side is taller. We LOVE the purple with the butterflies!


We then went down for her back scan to make sure the brace fit exactly as the doctor wanted it to. This is a picture of Ava standing for the scan. She didn't complain once.


The doctor said with the brace on Ava's curve is 18% as opposed to 26% without the brace. She reminded us again the brace will not likely correct the curve it only helps to make the curve remain the same. (That is our goal.) However she MUST wear the brace for 14 hours a day. It will be a challenge. They do surgery if the curve is 45% or over so brace support is a must.

This first week we will let her get adjusted to it. She's been doing great about just putting it on and leaving it on. Sleeping with it is what doctors prefer but they also know that for some people it is impossible. So regardless of when it is worn it has to be 14 hours. Those hours don't have to be all at once but has to add up to 14 hours in a 24 hour period. The first night she tried to go to sleep in it and was not able to. The second night she wore it for about 2 hours that night and had to take it off as again she couldn't sleep. Last night she wore it to bed for a bit longer but still was not able to wear it the entire night. The doctor warned her it is going to take some getting used to for sure! Her muscles will get sore and her body might hurt.

Yesterday she asked if I could go to school and help her explain it to her teachers and her class about scoliosis and her brace. We stood up in front of them and showed them what it looked like and why she had to wear it. We opened it up for questions and I was amazed at all the questions. They were all eager to figure it all out. I was even asked how I felt about her wearing the brace. (It's been very hard for me as I'll explain at the end) She even had to tell all about congenital diaphragmatic hernia the birth defect she was born with. Sadly scoliosis can be part of the effects of CDH. Her classmates surprised me at how accepting and concerned they were about Ava. I told them that although Ava has issues with asthma and reflux, and now scoliosis that she was still a very normal kid. I walked away yesterday thinking.... those kids were a lot more accepting than most adults would be. I'm so proud of Ava and how she handles everything that comes her way. She never complains. I'm reminded yet again of what a MIRACLE she truly is! God has blessed us!

I know what Ava is going through... about 15 year ago I broke my upper back in a go cart accident. I didn't need surgery but I did have to wear a full back brace for 4 months. It was VERY hard to say the least. Lexis was 4 at the time and Emeline was 2. Such a difficult time to have to wear a brace and take care of children. I was not able to wear my brace at night but did all day long. From experience it is HOT, uncomfortable and VERY tight. You can't take a deep breath and sneezing or coughing hurts terribly bad. It was during this time I got anxiety attacks. (Something I never experienced before.) I didn't tell Ava any of this and am supportive and happy about "this next chapter in her life". So sometimes we wonder why things happen to us and we can't figure it out at the time. I think breaking my back and wearing the brace has made me a lot more empathetic towards Ava. Mine was for a very short time. She will wear her until she stops growing. Most likely through her high school years. The doctor said depending on how fast she grows she will get many braces. When we got home on Monday night she asked if we could get a picture of her and I in our braces. We did! (Putting that brace on brought up so many memories... hard memories but I know that it all worked out and it will for her as well.)

So here we are in our braces. Thank goodness I don't have to have to wear mine anymore. I do have a very soft spot for her and this situation. What a trouper she is!


AND as you can see she is now taller than me. :( How crazy is that?!


She decided to try and wear it to school today. I called her amazing teacher Mrs. Madegan and ask if she could help her if she needed to take it off for 20 or so minutes. I'm curious how she will do today. So far the longest time she has worn it continuously is 3 hours. This will be hard but I'm confident she will do great. She is old enough to know her body. I just asked that she be very careful as the brace was about $4000.00. Yep! She has taken on so much in her life. I know she can handle this too. At times this seems harder for me than for her. I need to give things to God. He is the healer and the provider. In HIM we trust!

Once again keep Ava in your thoughts and prayers. We will go back to the doctor in 6 weeks to check the placement of the brace and to talk with the doctor. Life is what we make of it. We have a good life!

-Terri

Monday, December 4, 2017

Scoliosis

Hello family and friends. Today was a very long day for Ava and I. On Ava's last x ray the radiologist mentioned the word scoliosis in his notes. That jumped out at me and I called her Orthopedic doctor to set up an appointment. He had discharged her in 2013 as he said her back looked fine. Ava has grown so much over the last year. Something like 6 inches... crazy huh?

Ava and I before her appointment. We are now the same height 5'3!


So I'm having a hard time grasping today in my brain so I'm not going to go into detail. Yes I know scoliosis can happen in CDHer's due to the fact that their patch pulls and "tethers" down their spine but STOP not on Ava. I'm not ready for this. So for the facts of the day. She was in the fancy x ray machine once again. She also got x rays of her hands. They say they can tell about aging and growing through your hands.



Her curve is on the left... usually people with scoliosis have the curve on the right. It does make sense though as Ava's Gortex patch is on the left side.


Here is the findings of the x ray results.
Findings / Impression: There is levoscoliosis of the thoracic spine
with Cobb angle of 26 degrees between T6 and T11. Negative sagittal

balance with offset of 9.1 cm.


Dr. Weinstein diagnosed Ava with scoliosis today. He said she needed a back brace and he wanted her to wear it 14-16 hours a day. He also ordered an MRI which we were able to do today. She was very afraid at the start, tears streaming down but then she did fine. It was me that was a nervous wreck. I was able to stay in the room with her. Ava has penetrating eyes. I had flash backs of when she was small and she couldn't talk. Her eyes would show such sorrow. It was so hard watching the fear yet again. She was in the machine for almost an hour. I wasn't able to bring my phone so I didn't get any pictures of the MRI.



She had to be measured. She's excited about the brace. I'm not at all. Fifteen years ago I broke my back in a go cart accident. I had to wear a full body back brace for 4 months. It was terrible. It pains me to know she will have to go through this. However the goal is to keep her curve exactly where it is. We caught it before it was really bad. If we can maintain her spine now she will not need surgery in the future. All of this news is hitting me like a ton of bricks. I'm reminding myself to remain calm and let God take care of her. It's just so very hard to do all the time. I wanted to bawl my eyes out but I had to be strong for Ava. I'm just amazed at how brave and strong she is! She truly is one in a million! Now we wait for about 6 weeks and then we will be back to get her brace and have Dr. Weinstein make it perfect so that it will help Ava.

Ava getting fitted for her brace. 


Silly girl!



She got to pick out a pattern for the brace. She choose butterflies!


This is a sample of what the brace will look like. It will be opposite than this since her curve is on the left and not the right.


Please keep us in your prayers. This is another BIG change in our lives. We have yet to get the final read on her CT scan from her surgeon's appointment. I'm assuming they are okay however looking at her diaphragm today on this xray it concerns me. I'm just not sure if her patch is steady and good. SO much to think about... so much on my mind. We need your prayers!

~Terri


Thursday, November 30, 2017

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

Saturday, November 4, 2017

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