Bronchitis

Hello Ava friends. She was doing so well being healthy, but of course, she always seems to catch a bad cold around Halloween. This year was no different. She started coughing October 25th. She still ended up going to her school dance, so that was good. (Brian and I chaperoned it.) Crazy 6th graders!

I hope you all had a great Halloween. Ava was Harley Quinn from Suicide Squad.

Yes, Harley gets treatments too!

Brian and I dress up too. We were none other than Woody and Jessie from Toy Story. We totally surprised Ava, and she was very shocked, to say the least! We always have fun.

I took her to the doctor and sure enough, she had bronchitis. She got an antibiotic, and we continued to do her asthma regimen. Thankfully she is much better today.

Here she was getting a breathing treatment. We brought out her old dog to help her be able to breathe better.

She looks so little here in that picture. She's much taller than me now. Like 4 inches last I checked! Please keep her in your prayers and as always, thanks for stopping by!

~Terri

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

Summer and Orthopedic Visit

Hello Ava friends! We have been having a great Summer. Ava took a swimming lesson last week. She did so well. It was the first time (ever) that she got tired and exhausted to the point she had to stop and rest due to her lungs. Swimming is excellent for her lungs and also for her scoliosis. She learned all the styles of swimming. She made us laugh by not understanding quite how to dive. She thought she had to fly into the water like Superman and they wanted her to put her hands straight down and fall in. She is a silly girl. Brian and I stayed during her lessons. (Brian was a swimmer in high school, so she always wanted his praise.) I did not tell them about her medical history as most of the instructors were young teenagers and she had a new instructor almost every day. We were so happy when she told us that while swimming her teacher asked her why she was "resting"... she replied, "I only have one lung, and it takes me a little longer sometimes." She is advocating for herself! That is huge for me. I am very proud of her.

She may kill me but here is one of her videos of swim lessons. She loves the water but is not so sure about diving quite yet!

The other day I noticed her left shoulder blade was a lot further out then her right one. It scared me, and I called and got her in to see Dr. Weinstein. She had an appointment in August, but there was no way I was waiting that long.  I was so glad they were able to get her in yesterday. They did the "usual" hand bone age scan and also the full body scan. She had her brace on, and they told her to take it off.

It was extra busy in the office, and we had to wait. At one point Ava sat on the floor. She doesn't care at all about being uncomfortable. Give her some music (She LOVES to do the music videos.) and a pair of headphones and is good to go for hours! She amazes me!

I was not surprised when she measured almost 5'6. I can't believe how crazy fast this little lady is shooting up! Finally, Dr. Weinstein came in and examined Ava. He asked her to lay down. He wanted her to take off her brace and put it back on while she was laying down. (We learned this back in January when she first got the brace, but she gets lazy and does it standing almost all of the time.) He told her that she must put her brace on laying sown to get the most benefit out of it. He was calm and reassured her that he was very sorry the brace was so uncomfortable and hot. He is the kindest man. I asked him how her curve was and he said it is holding stable. GREAT NEWS. The shoulder blade is uneven due to her scoliosis.

I told Dr. Weinstein what Children's Hospital of Philadelphia's orthopedic doctors said about him... they oh and aww-ed about how Dr. Weinstein was the BEST orthopedic doctor in the WORLD. They told us he had written many publications, had done a lot of research for scoliosis and wrote the books on how to treat scoliosis. Plus he has received a ton of Awards for his achievements. We KNOW without a doubt that yet again God gave Ava the best! How awesome is that? I seriously am in awe over how great God has planned things out for us. First getting the best pediatric surgeon in Philadelphia (at birth) to now the best orthopedic surgeon/doctor today. MANY of our prayers answered regarding Ava's health and life!

Here is her latest scan. They said her curve is now a 20 degrees. (It measured 22 last appointment) I was a bit shocked as it started at 26 degrees in December. They told me that it could differ from each person that measures it and also from each scan. AND her scan made her diaphragm look a lot better as well of course to me... I'm not a doctor by any means. Also, we were there for a spine scan, not an x-ray. Either way, I'll take it! 

Here are the "official" scan findings from her July 30th appointment.

Impression: External brace has been removed since prior exam.

Thoracic dextroscoliosis, from superior endplate T2 to the superior endplate of T7 measures 20 degrees, previously 15 degrees.

Levoscoliosis from superior endplate T7 to the superior endplate T10 measures 18 degrees, previously 16 degrees approximately at this level.

Here is the scan results from her very first body x-ray on December 4, 2017-

Findings / Impression: There is levoscoliosis of the thoracic spine with Cobb angle of 26 degrees between T6 and T11. Negative sagittal balance with an offset of 9.1 cm.

The good news is she is NOT having any back pain. So now to get her to wear her brace for 14 hours a day is the goal. She does good wearing it at night but not so good wearing it during the day. Right now the brace is working!

Thanks for checking in on her. We are blessed to have so many supporters, followers and friends that think and pray for Ava. We love that you care!

I'll leave you with one of her cute snap chats!

Thanks again. We appreciate your love and support!

~Terri Helmick

Cardiologist... what is normal?

Happy 4th of July! I hope everyone has a great day. Ava and I kinda just chilled today and poor Brian had to work. We thank anyone reading today in the military for their service. We are so happy to live in America! God Bless you all! Thanks for checking in with us!

It is very hot and humid here in Iowa. Where is Iowa you ask? We are in the in the Midwest! What are we known for? Yep corn and farms. It is slow paced here. We live in a town of 25,000 people. We rarely ever have to wait in traffic. We are great with that. So now you know!

Ava had a cardiology appointment yesterday. I was a little nervous about this appointment with Dr. Reinking as Children's Hospital of Philadelphia had requested Ava see her cardiologist as a few of her tests indicated possible pulmonary hypertension. She is now 5'5. (98th percentile) Yes I got passed up. Hey I'm okay with that. The rest of her stats... Blood pressure 103/63. Weight 95 pounds (61st percentile) BMI 15.89 (17th percentile) Temperature 99.3 (She was wearing her scoliosis brace so she was warm.) Pulse was 100. Respiration was 26 and oxygen was 100%

They did an electrocardiogram (ECG or EKG) test. It measures the electrical activity of the heartbeat. That was normal. Or maybe it wasn't do you see that face? Scary! She is silly she took all the stickers off herself and put them back on the paper and brought them home. Why? She said, "I've never taken them home with me before." Yes only Ava!

Everyone and I mean EVERYONE told us they loved her hair colors and curls. A few weeks ago she asked... I said of course and did purple, pink, teal and blue hair color. (At home.) I can't believe how much she is growing. She's turning into a beautiful young lady. I signed her up for swimming lessons this Summer. She will be starting middle school in the Fall. 

What is pulmonary hypertension?

Pediatric pulmonary hypertension (PH) is high blood pressure in the arteries of the lungs (the pulmonary arteries). PH is a progressive disease where the pulmonary arteries continue to shrink, making the right side of the heart work harder as it makes the higher pressure needed to force blood through the narrowed arteries.

So in simple terms. The blood on the right side of Ava's heart is pumping blood into her lungs... she was born with pulmonary hypoplasia (small lungs) but due to her left lung being very small there is limited "working parts" meaning the blood has to pump a little faster because it has a smaller area which actually functions. (If it functions at all. It may only just pass air.) They told us that her lung could grow and expand however since it didn't grow right inside utero. She has less alveoli, the small air sacs in the lungs so her left lung is not normal and never will be. Good news is you can live with one lung. Her right lung is very strong and can sustain her! Here is what Ava's lung may have looked like at birth. It now fills the lung space but they don't know just how well it actually performs. 

Here are a few reasons the doctor thinks she could have Pulmonary hypertension. The obvious one was she was born with diaphragmatic hernia. (While growing inside of me her organs migrated to her left lung area due to a very large opening in the left diaphragm muscle.) Pulmonary hypertension was one of the things she nearly died from in the NICU. They had to stable her heart and lungs to even begin to think about her repair surgery. It took 2 whole weeks for her to be strong enough and well enough for her Gortex repair. After her first surgery she no longer had it. So she may just run a little higher than normal kids... another theory is she may be having a little bit of a hard time at night. Ava gets into a very deep sleep and sometimes irregular heart pressures can be due to sleep apnea. And finally the one that probably fits... it could be associated with her scoliosis. Her spine is growing to the left and it may be putting stress on the right side of her heart. So those three things. 

Dr. Reinking wants to do a cardiac catheterization, which will give a definitive diagnosis of PH, to determine the severity of PH and guide her treatment. Because cardiac catheterization is an invasive procedure he will require the assistance of cardiac anesthesiologists and often a night’s stay in the Intensive Care Unit. During the procedure, a catheter is threaded through blood vessels into the right side of the heart to the pulmonary artery. With this catheter, they measure the pressures in the pulmonary vessels and the blood flow into the lungs to help them determine the severity of the condition and confirm the diagnosis. They will give Ava medications during the catheterization so that they can see how treatment will affect the pressure in the pulmonary artery. Catheterization can also help predict disease progression.

He also said she has a leak as well but he is not concerned about that. Her heart is also pushed to the right side of her body... again due to her organs growing in her chest. Here is a diagram that might explain  Pulmonary hypertension a bit better.

They will be calling us soon to set up the procedure. We thought doing it during Summer break will be the best. She is never afraid. I thank God for that. We have a lot of appointments in September. She will see her spine doctor, her GI doctor and her lung doctor. 

And as always we make a trip to Hurts donuts! LOVE them!

Please keep Ava in your prayers. You guys keep up with her journey. I keep waiting for it to slow down. We are grateful she is so healthy right now. We know how quickly things can change. We have no doubt that God holds her close each and every second. Thanks for dropping by!

~Terri

Back to Children's Hospital for Research!

Good day friends and family. We traveled to Philadelphia last week for Ava to be in a Pulmonary Hypoplasia (Babies born with small lungs.) Research at CHOP. We also got two second opinions. (One from Ava's very first surgeon, Dr. Adzick and one from Dr. Denney an Orthopedic doctor about her scoliosis.)

Brian, Ava and I drove to St. Louis (3.5 hour drive) to board an American Airlines flight 522 to Philadelphia. I wanted to do ONE non stop flight as many of you know I'm extremely afraid to fly. It was Ava's first plane experience. I was able to take medicine to help relieve my anxiety. I was so glad Brian was able to come with us. He's my rock. We are always a team when it comes to Ava and her medical care. So here we are getting ready for the flight. This was our plane Ava was standing in front of. She was so excited!

Ava loved the plane. It was a 2 hour flight. I slept most of the way but when we were circling Philly I opened my eyes and saw Ava taking pictures and loving the view so I decided to look out, Being the "photographer" I am I grabbed my Canon and started shooting. WOW the view was AMAZING!

When we landed we picked up our rental car and went to eat at Red Robin. We don't have one of these where we live so this was a treat for us. Didn't my chicken sandwich look amazing?

One of Ava's favorite part of our visit was the hotel swimming pool. Sadly it wasn't heated so she froze but she still swam three times.

So we were shocked that so much had changed in twelve years. CHOP had so many new buildings and a HUGE research center. All the offices were new except the surgeon's office. It was exactly how it was all those years ago. Here is the front of the building and Ava's NICU unit was right in front here. Oh the memories!

So our first appointment last Monday was with Dr. Deeney an Orthopedic doctor. He looked over her scans. (They took a new scan while we were there too.) He agreed the the brace she was in was what she needed. He suggest that she wear the brace for 18 hours a day instead of the 14 that Dr. Weinstein recommended. We were so happy that Dr. Deeney said that Ava was in excellent hands at the University of Iowa. He is known as a "legend" of Orthopedic bone doctors. What a relief!

Ava first had to have a full body scan and then a chest x ray.

We had a long wait for this doctor so she decided to eat some snacks we brought along. Good thing we did! She's always hungry.

So as you can see here is her last three body scans. Her curve is above her heart which is a little more unusual. You can also see a good/bad look at her diaphragm. The right side is normal and the left side is a lot lower and is not even seen on the side at all. (She was born with left congenital diaphragmatic hernia- Missing her left diaphragm allowing her stomach to move up by her heart and her intestines, spleen and a small portion of her liver up in her left lung cavity.) She has to continue to wear her brace for 14-18 hours a day. We are praying that the brace helps to keep her curve stable. She's at a 26 degree curve without her brace right now.

Next appointment was with "one of the greatest men that ever lived" in our eyes, Dr. Adzick. He was her surgeon at birth. We were so excited to see him again! He has not aged one bit. I asked him how it came to be that we got blessed to have him as her surgeon. He said the surgeon that does the "consult" is the surgeon who takes on the case. I know without a doubt God gave him to us! I've heard amazing things about all the surgeons at CHOP so any of them we would have loved to have. He just happens to be the director of surgery at CHOP. He does so many wonderful things to further the study of not just CDH but all of the birth defects.

We wanted a clear and honest about Ava's diaphragm. For the past year or so I've felt things were changing with the x rays. When she was diagnosed with scoliosis in December 2017 the doctor ordered a MRI. Dr. Adzick looked at all her scans and tests and he too thinks that the very left side has reherniated. However he thinks that she has a lot of scar tissue that is keeping things in place. I worry that if there is a hole that intestines may get up there and become obstructed. This would be a disastrous storm. If she needed to be repaired they could not go in on the side but would have to go above her ribs to fix her diaphragm. (We would then want the side muscle used to repair her diaphragm so that we don't have to deal with patches.) He is optimistic looking at how well she looks that she "could" possibly never need fixed. He said the same thing that her Iowa surgeon said, "Her intestines are like cement" they just are terribly compact and scarred. He was also surprised at all she went through from 2 to 4 years old. She has many lives! He wanted to discuss what he thought with Dr. Hedricks the surgeon that is doing this research study. (We've yet to hear their collective thoughts but are eagerly awaiting them.) Dr. Adzick always instantly calms me. He has this amazing way about him that is soothing. He talks very softly and I'm hard of hearing so I caught bits and pieces. Brian filled me in on the things he said later. It was so good to see him and show him our little miracle girl he had a hand in saving! I just can't believe how fast the time has gone.

Next she had to do an Autism Assessment. She had to go with a lady and they asked her questions. She said it was easy... all they did was talk.

Then we went to do a Physical therapy assessment. She had to do the strangest things. Like stand on one foot and balance while closing her eyes. She also did some eye hand coordination tests. She did a 6 minute fast walk. They took her blood pressure and oxygen before and after the test. 

She has been having problems with her right heel. We went to see her orthopedic NP before we left. She said that with her bones growing so fast  her muscle is hurting as it needs stretching to adjust to the fast growth... basically growing pains. I felt some of the physical therapy she could have done better if that heel wasn't hurting. She did her best!

We took time for lunch and as her sisters she enjoyed the huge CHOP lobby. The ball dropper thing was Lexis and Emeline's favorite thing to watch. It brough me so much joy to see AVA standing there... right above her was where she fought for her life. It was like coming full circle and standing in God's Amazing Grace. I felt so very blessed!

 

You can barely see her but Ava is at the bottom of the stairway here. And the second picture is her view looking up. It hasn't changed much at all!

Silly Ava taking her own blood pressure.

Of course we had to take photos of this glorious occasion! Happy, Happy Day!

The last thing we did last Monday was BNP blood sample. We did not tell her about this test like we did with the others. I didn't want her worrying about it. She was so scared but did really well. The nurse was just amazing. She sang to her and was so funny. You can see the look on her face she wasn't ready. It was done before she even knew it began!

We were so tired after that first day. Ava was so excited to go back to the pool. She froze... her hands turned purple and her lips too but she LOVED that pool! I took advantage of their work out room. Only one machine worked but hey as long as I was the only one in there it was good.

Tuesday was also a FULL day.  We went to the echo lab for an ultrasound of her heart. When Ava was born her stomach and other organs pushed her side to the right of her body. What we didn't know was that the position of her heart never moved back over and her heart is also laying some what slanted... the technician had to have Ava lay on her side in order to get a clear view of her heart. She then asked... was she born with congenital diaphragmatic hernia? Why yes! All is well with her heart!

Next we went for Developmental testing. They wanted to see what Ava knew. This test we could not stay for so we walked around a bit. They gave us about 5 forms to fill out. Strange questions? Yes they were. They wanted to know stuff like... can Ava think for herself? Can Ava order her own food at restaurants? Can she tell you directions to get somewhere she knew? Can she use a credit card? Can she email, text or message people? Does she keep to herself? Is she social? It went on and on. I filled out 4 an Brian took the extra long one. After we got those all filled out we started wondering if we could find Daisy. She would clean Ava's room and be so happy and positive. We asked a cleaning lady that we saw in the hall. She sent us to the basement. We must have looked confused because a couple people asked if they could help us. They led us to the head of housekeeping. We told her our story and asked if there was anyway to find Daisy. She called and sure enough she was working that day. We set up a meeting time in the hospital lobby. Ava was still in testing but at 11:00 we were reunited with our lost friend Daisy. As soon as I saw her I burst into tears. All the emotions I was holding back about Ava and all I felt just came out. Seeing her brought back so many memories. She was our light at the end of the tunnel. She gave me the biggest hug. Brian and her hit it off twelve years ago. They teased each other and it gave us something to think about instead of our child hanging onto life. What a JOYOUS reunion it was! "We love you Daisy. Thank you for giving us so much love and attention!" When Ava was done testing we told her that we had caught up with Daisy. Her manager told her to spend as much time with us as she wanted. YAY! We had lunch with her. To say she changed our lives is an understatement. She made a difficult day worth smiling about! It's a great lesson to all... show kindness where ever you go. You never know when someone needs you so go above and beyond for strangers and your loved ones. God gives us the ability we just need to share His love! "We will never forget you Daisy and we are so glad that Ava was able to meet you!"

We went to see General Surgery to visit with Dr. Hedrick. She is the doctor that is doing the research study. She thought Ava looked great. She said of course she remembered Brian. No one seemed to remember me. Perhaps it is because I lost so much weight. (I hope.) I think I'm worth remembering! Everyone was shocked that Ava was so tall. We heard that with every appointment! We thought that she was going to go over the results with us of the last two days but it wasn't so easy. They told us they would send us the results in about 6 to 8 weeks. We can't wait to see how Ava did. We know she's better than average... she our survivor!

Last thing we did was do her Pulmonary lung function tests. They did it a little different that Iowa City. The lady kept telling Ava to keep trying harder. She didn't give her any breaks either, which was different as well. She finally wrapped it up and we were done. We were sad to leave our hostess Rachel. She took us to all our appointments and saw that we were taken care of. CHOP's research team is amazing. Ali helped us with travel arrangements. We were so appreciative of all their help! We are excited to be part of this study. More doctors and parents will be given answers. The thing we can certainly give them all is HOPE as CHOP did to us at the start. 

Ava had to get a picture of Rachel. "Thanks again for making us feel comfortable and informed! You were always there for us!"

Here are a few pictures Ava took during her trip. She may be learning a few trick from me! The first picture is the elephants in the hall at the surgeon's office. The second is out the window of the new building in the Pulmonary clinics. And of course the last is Philly.

Wednesday we didn't set any plans. We wanted to do a few things but just felt we'd see how everything fell. I talk to a lot of people online from my facebook page, "Raising Healthy Congenital Diaphragmatic Hernia Children" and occasionally I get the opportunity to meet survivors and their parents. Well we got to meet another family! Sandra and her son Anthony. It's always such an honor and I find myself quickly bonding with them. They came to our hotel. This was the first time that Ava has been old enough to ask and answer questions herself. To see them talk back and forth gave me goosebumps. Anthony had never met anyone who was born like him. He still deals with the effects of cdh. "Thanks Sandra and Anthony for taking the time out of your day to come meet us!"

So next we decided to take Ava by the Ronald McDonald house we stayed at before and then as she was getting treated at CHOP. Wow was that a blast from the past. So much has changed. They have added on and are making things even better for the families. We were just shocked by all the wonderful additions. This is the back of the house. The building to the left was not there when we stayed. The area is changing around them as well. It was very scary looking when we lived there... come on it was Camden, New Jersey. It felt safer... so much better than before. We talked with Teddy the lady who runs it. They are celebrating 35 years of service! How great is that? We sure appreciated all they did for us 12 years ago. It was surreal bringing Ava back and showing her around. It truly was our home away from home!

Next we were so excited to visit another one of our places we took Lexis and Emeline while they were there with us... the Adventure Aquarium. Such good and bad memories. The last time we were there I was pregnant with Ava and we all didn't know her future. Now here we were bringing her through the doors and showing her all the exhibits the girls LOVED. We had a great day. It was one I will never forget. This was right outside the Aquarium.

Here is a cool comparison I did with the first time we were there and now. Lexis and Ava look go much alike. How can time pass so quickly?

 Here was another great place we ate while we were here before., PEOPLE'S PIZZA. So good!

When I was almost ready to have Ava it was time for Lexis and Emeline to leave and go back home. I was very sad when they left. They had hugged me goodbye and hugged my belly and told Ava they loved her. It was so sad not knowing if it would ever get to see her alive. So I decided to go to Target there in Cherry Hill NJ. I walked the isles praying and asking God to give me the strength to get through all that was to come. I was fearful that I might go into labor before Brian could return. So my mind was very solemn that day. So as we were driving I saw that exact same Target. I told Brian that I wanted to go in. As we walked up to the store I put my arms around Ava and explain the day I was all alone. As we walked the isles tears filled my eyes. Ava hugged me and said "It's okay Mom, I'm here now." It was such a precious moment for us. All the hard work... all the prayers...all the hospital surgeries and stays. She is alive and she did survive! Amen!

A few trips to the mall. We managed to find some of the same malls we took pictures with all those years ago. Time changes so much!

Here are Lexis and Emeline in 2006 at the same fountain. How precious are they? They were pulling so hard for their baby sister. They are all so close now!

So then we flew back Thursday morning. We had the best time! Ava learned so much. We are so proud of her for putting so much effort into this study. We are truly blessed. I can't say enough times how emotional and wonderful it was all at the same time.

We continue to see how great our God is! We are blessed... so very blessed!

~Terri L. Helmick