Tuesday, May 1, 2018

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

2 comments:

Sandy Daron said...

Terri,

I am so amazed at how good Ava looks!! She is amazing and has an amazing family!!

Love ya!

Sandy
Cole's Foundation

Mary Lou said...

Terri….
I had to do pulmonary lung function tests the other day for the very first time in my entire Life…. Dr. L.—my primary care physician—thinks that I should have had them done several years ago…. Ah, well, better late than never, right? As an artist, a writer who ‘paints pictures’ with words, I have one word alone to describe pulmonary lung function tests…. Intense!! Willpower and a cosmic fear of failure allowed me to pass those pulmonary lung function tests with flying colors, because I did not need any second chances or do-overs!! We are now just awaiting the results!! I walked away with an incredible sense of admiration for all of my Beautifully Unique Kindred Spirit C.D.H. kiddos who have to endure those pulmonary lung function tests!! I thought about Ava the very second we stepped foot into our room, because I knew…. ;)
Peace out, Mary Lou
PS. I also told the doctor who ran my pulmonary lung function tests that ‘I’m hard to kill’…. Because, well, I am!! ;-D