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

Scoliosis Back Check up.

Hello friends! Ava's been doing well. She had a cold a few weeks ago. I started her on her asthma regimen of Symibcort, Albulterol, Atrovent and steroids and it cleared up in less than a week. So happy about that. There is so many illnesses going around right now. I seriously want to stay home and be locked up. Many of you know I watch my sister's four year old twins during the day while she works. They have had the stomach flu and the respiratory flu for the last two and a half weeks. It's been rough. Ava is learning to wash her hands and sanitize whenever possible. I'm a little OCD about germs... she may have gotten that from me!

I can't believe it's been six weeks since she got her brace. Yesterday we went back for an X ray check of her brace. The doctor says her brace is doing exactly what it's supposed to be doing. Ava's curve without the brace is 26 and when she is in the brace it lowers her curve to 12. We want Ava's curve to, not necessarily get better (although wouldn't that be a miracle) we just don't want it getting worse.

They want no metal on your body so we came prepared. She wore a bra that had no metal and a plain shirt with stretch leggings. (We caught the lady at the desk off guard....she said you will have to change out of your jeans... Ava says THESE are NOT Jeans they are leggings! Oh the Joys of what comes out of this child's mouth get me every time!)

This is her newest x ray. The first picture she is in the brace (yesterday) and the second photo is her without the brace. (6 weeks ago.) Seeing that change makes me smile! Ava says "I guess it is doing something!"

I've been so proud of her. She has really been wearing it for the 14 hours a day. So the deal we made is if she sleeps in the brace all night then she doesn't have to wear it to school. If for some reason she is not able to sleep in it at night then she has to wear it to school. Sadly even with all those sleeping hours she still has to wear the brace another 3 to 4 hours after school. She has no problem at all with the brace. It's just become part of her. This morning she had left it out in the living room and it was so bizarre to see. Thinking back wondering and asking God "WHY did I have to break my back and wear a stupid tight restricting brace?" Well now I know. I have so much empathy and love for her and this brace. So sometimes when we question why God allows bad things to happen I refer to things like this. I have so much more compassion for her.

The doctor wants us to keep doing everything the same. He wants to see her back in 6 months. Yikes I thought it would be sooner but if she has no issues I guess that is a good thing. Plus we all know how fast 6 months goes by!

Ava sent me this snapchat picture yesterday. I just HAD to share it. She's growing up WAY too fast. She's a good little girl with a sweet, kind and loving heart. She is so outgoing and not afraid of life. It's all so simple to her.

Thanks for stopping by and for those of you that pray for us THANK YOU so MUCH! We certainly can feel your love, support and prayers. God is good!

~Terri

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