Every once in a while we are handed things in our life that seem impossible. We question God, we question ourselves. “Why?” It is hard to see the future. I am here to tell you there is HOPE. When doctors give the worst of news, they can’t see what God sees. This reminds me of a story. One day a little boy was sitting on the floor beneath his grandmother watching her make a cross stitch. He suddenly looked up with questioning eyes, “Grandma what are you making? It doesn’t look like anything.” “Well, she said pulling him up onto her lap, Why don’t you look at it from up here.” Wow grandma it is pretty!” Sometimes only God sees the finished product. We are only seeing the underneath, the mess.
Ava is our third daughter. When I was about 19 weeks pregnant, I kept getting these unsettling feelings. After discussions with my doctor, she was concerned as well. I measured 4 weeks bigger than I should have been. I pushed for an ultrasound, knowing I must ease my mind. She agreed. Several days later I was given the test. That is when I found out we were having another girl. The doctor spoke with me briefly after the ultrasound. He was very solemn. “I believe your baby has Congenital Diaphragmatic Hernia. We are making you an appointment with doctors in Iowa City. I want them to confirm the diagnosis.” I tried to ask him more questions but he kept telling me to go see them first. “What was the spelling of this long word?” He only again said, “Please don’t read up on it just see the doctors and they will explain everything.” I left his office and jotted down hernia on my checkbook. I went to my mothers and told her. “Well hernia your dad has that.” So we were not concerned. She went with me the next day to Iowa City. I was not scared. I really felt things were going to be okay.
Hearing the actual confirmation words, “Your baby does have Left Congenital Diaphragmatic Hernia”, meant nothing to me. It was the words that came after that were hardest to hear. He explained at 8 weeks gestation the diaphragm forms but in the case of these babies the message gets lost, or it starts to form but then stops. Meaning there is a hole in the diaphragm, thus enabling the organs to move up into the chest cavity. If the hole is severe enough the lung that is affected is not able to grow. This is one of the toughest, deadliest birth defects out there. We just don’t know until the baby is born.
I sat there listening to him but my brain could not understand what he was saying. I could see his lips moving but no sound came out. The room was spinning around me but I was very still. I felt I was in a dream and I was trying to wake up. I did catch the next few things the doctor said, “With seeing your ultrasound I would give her chances of surviving somewhere between 20-35%. We do allow the option of termination, since we know she will very sick.” I then looked at my mother and said, “Did he just tell me I could kill my baby?” It was at that point that it hit me. This WAS real. I cried and cried. This was NOT happening to me. I wanted my baby. Why was this happening?
My heart was broken. I was numb. I felt as if I had been in an accident and I was at a stand still. No where to go. No help in sight. I was certain about one thing; abortion was not an option for me. They were telling me I needed to think about getting an amnio done. If there was anything else wrong with her that would even lessen her chance of survival. Basically if they found something besides CDH they wouldn’t even try to save her at birth. The amnio was virtually painless. It was my heart that was aching. How was I going to tell Brian?
We then met with a pediatric specialist he explained again that her odds did not look good. These babies are so unpredictable. None are the same. The real trouble is the lungs. If there is no lung function the babies die. We all need strong lungs to breath. He then told us she would not be allowed to take her first breath on her own. She would immediately put on a ventilator. Often these little ones need to be put on ECMO. This is a heart/lung bypass machine; of course it is a last option. This pulls blood out of the babies body filters it and then puts it back in. There are many risks to ECMO. My brain was on overload. I was given too much information and I was becoming literally sick. My head hurt. My stomach was in knots. Crying was all I could seem to do.
On the way home my mom and I kept remembering what the doctors said. It seemed hopeless. I called Brian and he met us at my parent’s house. I told him, barely able to get out the words. “Our daughter was going to be extremely sick. I was going to have to carry her to term and then have to watch her die. I couldn’t stop crying. My thoughts were very foggy. I was devastated, totally drained. I could barely think straight.
For the next few days I was literally a wreck. I couldn’t eat. I couldn’t sleep. My mind kept thinking and it wouldn’t shut down. I called my doctor broken hearted. I told him I couldn’t deal with all of this. I needed to be on some kind of antidepressant. He told me something I will never forget. “Terri, are you eating? Are you taking care of yourself? You need to focus on the things you can control and pray about the things that you can’t.” How SIMPLE was that. “YES!” Why was I already defeated? I had grown up knowing God. I knew he did things for a reason. Getting off the phone that day I had a new vision. I HAD to overcome this huge obstacle and get my daughter to the BEST CDH care that was available. Why should I believe the doctors in Iowa City? She wasn’t dead. She was very alive inside of me now and could she survive with the help of God, maybe. I was challenged now I knew my mission. I now had a new prayer. “God let this be easy for us. Please give us no yellow lights only green ones and red ones” (STOP and GO.) I searched for days on-line, looking for potential doctors and hospitals. I called many but we finally settled with Children’s Hospital of Philadelphia. I loved their slogan, “Where HOPE begins.” It just felt right! I made the appointment and on May 15th my mom, my brother and I drove 15+ hours to CHOP. (Brian stayed with the girls we had not told them the news at this point.) I was very anxious. Would they tell me something worse? I had an MRI, a level 2 ultrasound, and a fetal heart test done to see how bad our babies defect really was. At the end of a long day we sat down with the fetal director of CHOP. He told us that the baby’s heart was pushed far over on the right side near her right lung. Her stomach was beside her heart. All of her organs were most likely up in the spot of where her left lung should have been. Bad news a portion of her liver was partially up. This usually means a bad prognosis, however when they measured her lung to head ratio it turned up quite high. Dr. Adzick told us her odds were anywhere from 45%-75%. I was very hopeful when we left. I knew she needed to be cared for by these doctors.
So now I prayed, “God you know what we need to do but how will it all come about? We don’t have a lot of money but I do know you will take care of us. I have faith in you.” Things really fell into place. We sent letters to our family and friend informing them of our life circumstance, asking them for help. We shared our story with the Hawkeye; we wanted everyone aware of our daughters CDH. We held a benefit in honor of Ava, the proceeds were unbelievable. Complete strangers were sending us money in the mail. I was humbled by God’s out pouring of his blessings. I truly felt we were walking in his perfect path for our lives.
Coming up with a name for this baby was quite the challenge. My mother wanted me to name her something with a really great meaning. I was having a hard time. I felt like if I named her Grace or Faith I was setting myself up for disaster. I was looking but came up with nothing. So I gave up for a couple of days. All of a sudden I thought of Ava Elizabeth. I didn’t look up the meaning because I was already decided on that name and was afraid to be honest. Later that day I called my mom. I told her the name we had chosen. She asked what it meant. I then looked it up, I about fell apart when I saw the words on the page. AVA means “life” and ELIZABETH means “Our oath to God.” With God’s help, I had picked her the perfect name!
July 7th came way too fast. This was the day we packed the girls and left for CHOP. I was 32 weeks pregnant. There were many things that could go wrong with these babies so we were to go early. Both Brian and I had never lived anywhere else. This was all new and very uncertain. The thing that was most scary was the unknown and the “What if’s.” We were for sure about one thing. We would never look back and wonder if we could have done more. We were doing all we could do. We explained to the girls who were 8 and 6 that their sister would be very unstable when she was born. We told our oldest that Ava could die. We did a lot of family bonding in the next 5 weeks. Our home away from home was the New Jersey Ronald McDonald house. It was wonderful. Our room was decorated in the Wizard of Oz theme. Really how true was it? “There’s no place like home!”
It was time for the girls to leave, school was about to start. I really had a hard time letting them go. Brian reassured me that we were here for Ava and that it was no place for kids. So I waved goodbye to Lexis and Emeline on August 12th. It was hard not knowing when I would see them again, but even harder not knowing if they would ever get to see their baby sister alive. This was so difficult.
Everyday I would talk to Ava and tell her about how she was going to have to be very strong. I told her she was a fighter and that she could survive. I truly could communicate with this baby. She kicked so much she would wake me at night. When she needed love I would rub my tummy and tell her to come get in Mommy’s hand. This is the honest truth, she would plop her tiny bottom right up in my hand. Coolest thing I have ever experienced. I told my doctor that I had come to terms with all this and if this was the only time we had to share together I was fine with that. Ava and I really had a connection. I knew her before she was born. I knew when she woke and when she slept. I knew the position she liked me to lie and when she was uncomfortable. I had to talk to her during her twice weekly screenings she hated to be monitored. How funny.
Well the time came and in the early morning hours of August 31, Ava decided it was time to join the real world. My mother and my sister were there with us. I was ready. Labor went as expected. I was very nervous towards the end. I was to be taken to the surgery room where there would be a team of baby specialists waiting to take Ava. Only the doctor thought I wasn’t as far along as I knew I was. I started to panic, we had come so far for her proper care and yet we were not even close to the surgery room. I begged my nurse and she against doctor’s orders pushed my bed to the surgery room. As soon as I got in the room not even 3 minutes later Ava was delivered. She was the most beautiful pink color I had ever seen. In fact my mind played a trick on me for several seconds I wondered if they hadn’t made a mistake. She looked perfect. We were told she would probably come out blue. Then realization hit and I reached for Brian. It was now all up to her. I could no longer protect her. They came in after about 15 minutes and told us she was on the ventilator and that she was doing fairly well. Brian was able to take pictures of her at 45 minutes old. They were going to take her to CHOP through their underground tunnel. Before they took her they opened the door so I could see her. She had tubes and wires coming from everywhere. Her eyes were closed and she wasn’t moving. It literally tore me apart to see her this way. My brand-new baby was fighting already.
The first time I saw her in the NICU I was very afraid. I was extremely emotional. I tried to talk to her but as soon as she would hear my voice her heart rate would increase quite high and her stats would plummet. We couldn’t even talk to her. Standing by her bed my arms ached to hold her. I told Brian, “I just want to hold my baby. Why can’t I hold my baby all I want to do is protect her from all this.” During the next two weeks we almost lost her 3 times. She had to be put on the oscillating ventilator twice and was given Nitric Oxide to help her lungs be stimulated enough to start healing on their own. The moment you stepped into the NICU you felt drained and tired. Even though I just had a baby, the focus never turned to me. There was much more concern for Ava and her fight to survive.
One day was exceptionally bad. Her stats were dropping and she was hanging onto life. Both Brian and I sat there glued to our chairs. She dropped to the 70’s then the 60’s, 50’s and 40’s. I wanted to get up and leave but I couldn’t move. The nurse called for more help. The doctor took her off the vent and started hand bagging our tiny daughter. All I could think was, “She is going to die right here in front of us and there is nothing we can do.” After what seemed like hours which I’m sure were only minutes, they started talking about putting her on ECMO. We were terrified. I finally was able to get up. I went into the family room where my mother was. “Mom she is not doing well. If the next blood gas doesn’t look good they are going to put her on ECMO. I just can’t believe this is happening.” She then went into see her. I walked the hall to the family bathroom, with tears streaming down my face. “What was going to happen?” I closed the door and slid down the wall. Then I prayed like I have never prayed before. “God we have come so far. I beg you, I beg you, please no ECMO. Save my baby. You promised me you wouldn’t give me more than I could handle. God this is too much. My heart is broken. I need to know you are with us. I want you to send me a miracle, right now. Show me, your presence.” I washed my face and took a big deep breath, and then said the six words that I meant with all my heart. “Not my will, but yours Lord.”
Walking down the hall toward her room I was comforted, a sense of peace came over me. As I got closer I saw the nurse. “Terri you are not going to believe this? I just took her blood gas and it is the best she has ever had. In fact if you would take a blood gas from any of us right now that is what we would be. I can’t believe her.”
God sent me the reassurance that day that I needed to keep hanging on. She was finally stable enough to do her surgery on day 14 of life. Ava and drama, she once again gave us a scare, in fact, one of the doctors had to hand-bag her the entire surgery due to an allergic reaction to the paralyzing drug. She wants to do things on her own. Take some of her power away and she is mad. The doctor informed us that her stomach, spleen, large and small intestines, and a portion of her liver were all up in her chest. The most unbelievable part to me was that once her organs were put back down in their proper places, her left lung actually unfolded and inflated. After her repair Ava only continued to grow stronger and get better. On September 29th she was extubated. As they were taking the tube out of her lungs I said a prayer out loud. “I Believe, I Believe.” We had seen numerous babies taken off the ventilators only to have them put back on hours later. She did great. The next day Ava was breathing room air. That was almost unheard of with CDH babies. Her surgeon called Ava “Wonder Girl.” Our next focus was on getting her to eat. Since it had been a month since she was born she had to learn how to suck and swallow. A small task we take for granted was a major hurdle for her. But once again she made the medical staff astonished by how fast she picked things up. They were always telling her, “It’s all about Miss Ava!” They were very right. I was determined to get her to breastfeed. Against many orders we tried secretly. She began nursing, another prayer of mine answered. On October 16th, after 47 days, she was discharged from CHOP. It was so good to finally be going home. We had been there a total of 4 months.
This was not the end to Ava's story but merely the beginning. Ava would go on to have a total bowel obstruction and a recurrance of the diaphragm (reherniation) at 25 months old. She struggled with an open abdomen for 4 months while her insides healed. Ava went through countless operations, central lines, dehydration spells and depression. I begged the doctors to let Ava continue her care at home. I then learned so much medical procedures and IV care than I ever imagined. Whatever it took to get our little girl back is what we did. Ava is a fighter in every sense of the word. She amazes me daily. It has almost been seven years since her last surgery. She is growing very tall but is on the thin side. We discontinued the g-tube when she was four. (She picked up eating by mouth well again.) She's been doing good managing her weight on her own. She is such a joy. She loves life and all that surrounds her. She started Kindergarten in 2012. That was a tough adjustment for both her and I. She's now in third grade. She does struggle with school however you'd never know as she loves to be social and loves her friends. She does take time out of school to heal from colds and sicknesses as her lungs still struggle to stay well when they are ill. Ava was diagnosed with asthma at age four. We follow a regimen of steroids and Albuterol when she has a cold or has lung issues. She's had reflux since birth and is now on the maximum dose of Prevacid and Zantac. Ava has taught us many things about life. The one thing I learn and still carry everyday is how good God is and how we must never take even one single day for granted. I'm honored to be her Mommy!
Ava's Hospital Stays and Surgeries.
►1st stay CHOP August 31 - October 16 2006 (47 days)
►September 13 2006 Surgery to repair Left Congenital Diaphragmatic Hernia.
►2nd stay GRMC Pneumonia 2007
►3rd stay GRMC Croup 2007
►August 8, 2007 Ava had surgery to put tubes in her ears.
►4th stay University of Iowa October 3 - November 19 2008 (47 days)
►October 4 Surgery for total Bowel obstruction due to Gortex patch.
►October 10 Ava's chemical burn on her arm is revealed.
►October 14 Surgery to reopen incision due to swelling and abcess.
►October 16 Surgery to remove burnt skin and place cadavar skin on her arm.
►October 20, 2008 Surgery to place Wound Vac, leaving her stomach open and placed central line. They also took skin on her scalp and did skin graft on her arm. Shaved her head entirely.
►Ava learned to walk again on November 21, 2008
►5th stay University of Iowa January 28 - February 9 2009
►January 28 Surgery to close her stomach and to place a g-tube.
►6th stay University of Iowa April 9 - April 12 2009
►April 11 Surgery to remove central line due to line infection.
►7th stay University of Iowa April 18 - April 22 Intestines are still obstructed. Ava became dehydrated and her tummy was very large.
►8th stay University of Iowa June 4 - June 17 2009
►June 5 Surgery to fix obstruction and place another central line.
►June 13 Surgery to place a drain due to an abcess in abdomen. Removed at home on June 20 because it was no longer working.
►9th stay University of Iowa August 25 - 27 High fever 105 Possible line infection
►August 27, 2009 Surgery to remove central line. No infection was found in line or blood but Ava's body was ready for removal.
►April 2010 Mini One button was taken out to be replaced and the hole could never be found. Her NP tried for an hour and a half to find the track with no luck. We decided to let it close and see how she would do with it.
►March of 2011- RSV. Ava lost three pounds in just seven days.