Our precious miracle~ Ava Elizabeth Ava is my third daughter. I was thrilled to be expecting but had a strange sense that was unsettling. I was measuring four weeks over (20 wks at 16 wks.)and told my doctor I wanted an ultrasound to make sure everything was alright. She assured me I was over reacting. Yes they found Ava’s LCDH right away but wanted a bigger hospital to determine her final diagnosis. I was sent to the University of Iowa Hospitals where they confirmed my doctor’s diagnosis. They gave her a 20-35% chance of survival. They offered to terminate the pregnancy. (This did not seem like the answer for us.) I was so shocked I had him repeat it three times. I was beside myself to put it lightly. I cried for two days and then set my mind to finding the best hospital for CDH care. I never wanted to look back on Ava and wish I would have done something more. Out of the four hospitals we were looking at, the hospital that we chose was CHOP. To raise awareness and also give us added money we had a benefit in Ava’s honor. I also got a hold of our local newspaper and they did a story about Ava and CDH. CHOP was extremely far away (16 hours) but we put our lives on hold and eight weeks before her birth we moved to the Camden, NJ RMH. What a great place! Our older two children came with us and we did a lot of fun things. I kept reminding them that I loved them and we were doing all that we could to save their baby sister. We hope she would come home to Iowa with us but the odds were really against us. As time grew closer my husband flew the girls home to live with grandparents. It was so hard to say goodbye to my babies and not know if they would ever get to see their sister alive. Plus not being able to tell them when they would see me again was one of the saddest things I have ever had to do. I kept reminding myself Ava needed the best CDH care. She arrived on Thursday, August 31, 2006. I was scheduled to be induced the very next day. I had a talk with her and we agreed that August was a good month. (Both her sisters were born in September!) I had her vaginally. She had the most beautiful pink color skin I had ever seen. She was a good size too. She did not take a breath and we did not hear her cry. She was whisked away and immediately vented. Ava had a very difficult time controlling her blood pressure and had to be on Dopamine and Dobutamine. The first time she opened her eyes was on September 6th. I had to leave the room because it was too much for me to bear. Her little eyes were so penetrating and were screaming for my help. Ava got these horrible hiccup type things that started in her abdomen and would go to her throat. I was so terrified by this. It shook her entire body. I insisted that they make them stop. A huge mistake! They gave her the drug Pavulon this paralyzes your entire body so that the ventilator can do all the work for you. This made Ava’s vitals drop and that night we almost lost her. The doctors kept putting off surgery because she was so unstable. She avoided ECMO on three different occasions. She had to be on the oscillating ventilator twice. Finally they decided on Sept. 12 (13 days old) that she was ready. The normal procedure was to give the babies Pavulon the night before surgery to let them rest. Ava once again went ballistic with this drug. So surgery was a held off till the next day. My husband and I felt poor Ava was trying to hold on but was getting weak with all this stress they were putting on her tiny body. Her surgeon Dr. Adzick agreed that we would wait till a few hours before surgery to give her the Pavulon drug. I begged him not to try this again as I felt she was severely allergic to this medicine. So against my warning they gave it to her again right before her repair. She responded the same as before. They proceeded with the surgery although one doctor had to hand bag her the entire time. Her repair took two and a half hours. Dr. Adzick explained to us that Ava had no left diaphragm or no muscle around her esophagus. He used a gortex patch and built her muscle that was not there. He concluded to tell us, she had her stomach, large and small intestines, spleen and a large part of the left side of her liver had been up in her chest. Her heart was still way over on her right but might move a little with time. But the surgery was a success. We were so relieved. The days and weeks following her surgery were all an up hill climb. It seemed her body was telling us, “Finally I can heal and get better!” That is exactly what she did. She was extubated after twenty-nine days on the ventilator. What a glorious day that was. I chanted over and over to God (out loud) while they were removing the tube. “I believe, I believe!” The next day Ava was breathing 21% room air. Prayers do get answered! Her next battle was the feedings. They did a stomach study and told us she had severe reflux. She was put on medicines (Prevacid and Reglan) Eating was difficult. She had a hard time sucking and swallowing. I was bound and determined to get her to nurse. Days later she did. We left the NICU after six and a half weeks. She came home on a heart and lung monitor and an ng tube. She no longer needed the tube so we stopped it after eight days of being home. Her nursing got better and the reflex was gone. She gains weight very slowly, averaging about a pound a month. As of today, Ava has no delays. She smiles, plays and rolls just what an eight month old should be doing. She is still under weight in the 3% but she is thriving. She is on Diurel and Potassium but will be totally weaned, meaning “no” meds at one year. We battled our first sickness in March. The pneumonia was watched with a five day hospital stay, including croup tent, antibiotic shots and breathing treatments. We are counting our continued blessings. I never imagined she would come this far. It is so strange to be told your child will not survive and then go through all of this and have a normal (who is normal?) baby is beyond me. I owe it all to God. It is so terrifying to find out your child has little chance of survival. The reality is you have no control. This is a very hard thing to accept. I am a huge believer in God and I have faith to believe he will give us no more than we can bear. I questioned God so many times during our CDH journey. It is so hard to find peace in such a desperate time, but that is exactly what I did. No matter what the outcome I knew I had to give Ava a fighting chance. She was worth ever second of hard time we would face. The thing I can’t stress enough is how you have to find HOPE. There is nothing too hard for God. Miracles still exist. Prayers get answered and decisions become the only thing you can control. Stay positive and focus on the things you can change and hand God the things that are beyond your control. This is not the end, only the beginning. We were given bad odds but Ava defied all things. She had a rough start, we almost lost her three different times within the first two weeks but she was such a fighter and had a determination I have never seen before. God not only made Ava survive but made her absolutely normal. To this day I am amazed at her will to survive. Don’t give up, these tiny babies need us. They need our love and compassion. We are their voice! ~ Terri Helmick~ Ava Elizabeth Born~ August 31, 2006 @ Children’s Hospital of Philadelphia Estimated birth weight~ 7.7pounds Length~ 23 inches Parents of Ava~ Terri and Brian Ava has two older sisters~ Lexis Alise-8 and Emeline Rose-6. Website~ avahelmick at carepages.com


The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.


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