Ava Elizabeth

Our daughter was born fighting. She was diagnosed with Congenital Diaphragmatic Hernia when I was 20 weeks pregnant. She was given horrible odds of survival. Our home is in Iowa. We traveled to Children's Hospital of Philadelphia for her birth. (16 hours away from our home.) We never wanted to look back and wish we could have done more.



She was born in 2006. Boy did she come out fighting. Her third day of life was especially difficult. The doctors told us that she was within one bad blood gas of going on ECMO. (This is a heart and lung bi pass machine.)



She stayed strong and didn't need it. Her 14Th day of life she was prepped for her first surgery. They would bring all the organs (stomach, spleen, large and small intestines, and part of her liver) down to their rightful spots and place a gortex patch in place of her diaphragm that had been missing. Her left lung inflated and started working. It was the first HUGE miracle. She then started her recovery and we were discharged after 47 days in the NICU. She thrived when she came home. She became a normal child. She no longer needed her NG tube for feeding. She began nursing! We had a fabulous first and second birthday for her. We celebrated her life and her health.





I wish I could say that is the end of her "Miracle experience" but it was just the start. Then a month after her second birthday she became really sick. She kept throwing up and became lethargic toward the end of the day. That night she was airlifted to a bigger hospital. We were in shock. Ava was rushed to emergency surgery. It took seven and a half hours. They had found that her intestines some how swallowed up her gortex patch and was trying to expel it through her digestive system. Perhaps it might have worked except they got stuck in her small bowel causing a total obstruction. When we finally saw her she looked really bad. She was on the ventilator and was getting a blood transfusion.



The next few weeks only got worse. Ava's incision got infected and it had to be oped back up an inch for them to drain it out. Next she got a severe burn on her arm from a picc line dressing.



Then her body stopped producing urine. Her tiny 19 pound body swelled to twice it's size right before our eyes. They were talking about dialysis but then switched her medicines and she began peeing. Ava was extubated too soon and a few days later she was reintubated. Her lungs were a mess. At one point she only had a tiny portion of her right lung. The rest was collapsed or had fluid in them. Her stomach kept getting bigger and bigger so we demanded that she have more tests run to show what was going on. Finally the pressure got so great inside her that the only option was to open her whole abdomen up and leave it open so that her intestines could heal.



Well if one of those surgeries weren't enough she was again prepped for a second one. This time they would place a wound vac over the open abdomen for even faster healing. Plus they were going to give her a Hickman line. This would be a central line so that we could "feed" her through IV nutrients. During this last surgery they did her second skin graphing for her arm that got burnt from the picc line. Unannounced to us they had to shave her entire head for the graft. We were so distraught to say the least.



Ava still fought so hard. After getting moved out of intensive care I decided it was time to figure out a way to get her home. She was getting depressed and who could blame her? They taught me all about her central line and her wound vac and all her special needs. On day 47 we left the hospital and we were finally going home. Though our journey was no where near over, she could start the process to really heal.



It was wonderful to finally be home and to be with our other two girls Lexis-10 and Emeline-8. Ava did much better at home but she continued to threw up all the time and to make matters worse it was dark green bile. We went back to the doctor and did a swallow study test. It showed that she still had a bowel obstruction. Her doctor told us that we must wait about 2-3 months before going back in to fix it. Her intestines just were not ready to be operated on again. They had become like "cement". So again we went home and just dealt with her illness. Ava did much better at home. She began to perk up and smile again. She had to learn to walk all over again. On November 21, 2008 she shocked us by taking three steps all on her own.

Ava was admitted to the hospital for a little more than a week due to bowel obstruction complications. But once again we were sent home to "deal" with it all.

Finally after 4months I insisted that Ava HAD to have her surgery. Her surgeon was leary but decided to listen to me. On January 28Th Ava had her final closure surgery. A g tube was placed at this time.



Another hospital stay ( April 9- 12) was inevitable for a few days again due to complications with her bowels and swelling. Her central line became infected on April 11th. She ran a very high fever and wasn't doing well again. Again she was taken to surgery to remove it.

Ava's sixth hospital stay was inevitable as well. (April 18- 22nd) She was still obviously obstructed. Since she had no central line I could no longer give her IV fluids at home so we stayed for a few days to give her some nutrician.

Yet again we were back at the hospital from June 4th - June 17th.

June 5th was her last and final major abdominal surgery to fix her bowel obstruction. She was given another (Hickmann) central line for us to feed her at home. We prayed this would be the last. Ava had gone through so much.

Ava got very ill after her surgery and spiked a high fever. Her stomach grew very big once again. I knew something was wrong and insisted again on a CT scan. They listened. There was a problem. She had an abcess as large as her kidney. They took her again to surgery and placed a drain in her abdomen. Finally she started getting better. It felt so good to be going home.

Two months later she spiked a very high fever again. We immeditely questioned the central line. She was admitted and they started running tests. She had been doing well eating by mouth so we decided to take it out on August 27th. Strangely an infection was never found. We figure it was her bodies way of letting it go!

We left the hospital and Ava became a very different child. She grew stronger and started loving life. We still protected her from people and germs but she did more things than ever before. She began eating more. We were using her g tube to feed her while she slept to add more calories to her diet.

We took her to check-up with her surgeon every three months, then every six months. Our last visit we heard an amazing thing... ONE year visit. I was so happy. Ava has a tough time gaining weight but they were impressed at how well she looked.

Ava got a CT scan in June '10 to check her insides. All looked great. I needed to know things were good in there.



I changed her g tube on June 31, 2010 and couldn't get the new one back in the hole. I called the doctor and they wanted her to come so they could try to get it in. They worked an hour and a half with no luck at all. We again assumed it was her bosies way of telling us it was done with the tube.

Today (July 17, 2010) Ava is doing well. She weighs 30 pounds and does it all. She loves to run. She peddles her bike and loves eating ice cream. She adores her sisters, Lexis and Emeline. We can't imagine our lives without her.





We love you Ava!



What I have learned through Ava.
~ Patience
~ To be her voice. I had to speak for her. I was her advocate. Which saved her life MANY times.
~ Lots and lots of medical things. I had to become a full time nurse.
~ That there are so many wonderful people out there. Ava supporters helped us.
~ To NEVER take life for granted.
~ Tell family and friends you love them!
~ To keep HOPE alive!

Thanks for taking the time to read our story. For more information and current updates about Ava you can visit http://avaslifewithcdh.blogspot.com or http://cdhawarenessvideos.blogspot.com or www.carepage.com (avahelmick)

~Terri L. Helmick