Written by Amie Martin
October 19, 2015 - Ava has been in the Cardiac ICU for 70 days, and 63 days wait listed as a 1A heart transplant...seems like a long time but there are children that have waited longer, and there are children that still wait. People always say to Brian and I, "you're so strong" or "I don't know how you are keeping it all together?" It's not easy, I don't feel strong...you trudge along because the alternative is not even worth mentioning. I pray Ava isn’t suffering, and I pray she will leave the hospital with us with a beautiful new heart. We've been exposed to a whole new world of fear, relief, heartache, triumph, friendship, isolation, sadness that makes your heart just plummet into your stomach, and joy that can not even be put into words. I've waited outside my daughter's hospital room door to embrace a fellow heart mom when the news came that her 18 month old son would finally get the gift of a new heart and then weeks later sobbing in that same embrace because there was nothing more that could be done to help their sweet angel. I've crouched in the corner to watch in awe a champion of a human being walk almost run down the hospital hallway after only receiving her new heart a week prior. We've seen doctors, nurses, therapists, and administration wipe the tears away from their faces as they walk away from a patient's room one last time. A child they have looked after for months on end, and when they come in for their next shift that patient will not be there.
It's exhausting, but we stare at the photos of Ava in all her beauty plastered all over her hospital room...we see Ella and Ava light up with joy and screech with excitement when they see each other over FaceTime...we feel the generosity of so many of you...we love viewing the #wherewillavagonext photos...we hear about and meet people with success stories and amazing qualities of life when all of this is behind them...and we are recharged by this hope and light that we see at the end of the tunnel. We don't even begin to think that our situation is the worst there is out there. It sucks, there's no sugar coating that...some days are better than others, but we have one hell of a fighter in our #AmazingAva. We don't waiver in our belief in God or her for one second. She is stable, still intubated, and her team knows that she walks a tight rope. So we wait, we welcome the good days and hunker down on the bad.
We have the privilege of spreading awareness about congenital heart disease and pediatric organ donation. This is just the beginning of a lifetime of educating all those that care to gain insight and learn about a disease that effects 1 in every 100 children. There is no filter, no prejudice, no socioeconomic barrier. We see children and their families struggle from all walks of life. With continued research and medical advancements these children have the opportunity to become adults, and families get to raise their child that quite possibly they were told they still had time to abort before 25 weeks gestation.
Thank you to anyone who has taken one moment to think about our family and Ava...if I haven't been able to thank you personally...Thank You for helping us get to where we are today. I/We can not wait for the day that we get to spread the news of Ava getting her gift.
I wish I would have written more down on paper during this journey. In all reality, we were surviving one day at a time, so I’ll give myself some grace in that it wasn’t my first priority to blog and document my feelings and chain of events during this time. It all began at our 20 week ultrasound. Since it was our second child, I told Brian he didn’t need to come with. I figured it would be a quick in and out. I knew something wasn’t right when the radiology tech was measuring the chambers of the baby’s heart over and over again. Crazy thing…it was a radiology student doing the exam. She kept her composure, but I knew something was up. She left the room at one point to get her supervisor and instructor. The instructor came in and measured the same thing over and over again. They asked me to go to the bathroom and empty my bladder to get a better position of the baby. That was their opportunity to discuss I assume. They asked me to head back up to my doctor’s office where I waited for what felt like two hours for the review and diagnosis to come from the radiologist. I remember feeling anxious yet calm. My OB doctor brought me back to an exam room and broke the news. I didn’t cry. I felt a sense of hope in my doctor’s eyes. Maybe she’s delivered this speech enough times before. Additional testing would need to be performed. I got in the car a bit shocked and frozen in my thoughts. I called Brian to give him the news but couldn’t get the words out. He worked a few blocks away, so I drove to pick him up…and so it begins.
Our little girl was diagnosed with a congenital heart condition called Hypoplastic Left Heart Syndrome. Further testing was completed during pregnancy to confirm the severity and other malformations of her heart. Within two weeks we had a fetal echocardiogram. Once again, my nurse brain told my husband not to come; thinking it would just be testing not a conversation of diagnosis and prognosis. Wrong again. The specialist saddled up in a small exam room with me and laid it all out. We were at 23 weeks gestation by now. Hypoplastic Left Heart Syndrome confirmed. A narrowing of her aorta confirmed. Ventricular septal defects probable. The medical team is required to inform us of diagnosis, prognosis, and all of our medical options. I was told we could abort our pregnancy before reaching 25 weeks gestation in the state of Illinois. I was told we could carry to full term, and she would most likely struggle. I was told we may have two minutes with her or a lifetime. Surgical intervention would be absolutely necessary to help her survive, and he gave me a short synopsis of what those procedures were. Lastly, pediatric heart transplant was discussed as a possible last-ditch effort to sustain life.
We didn’t even think twice about our options. God created this life, God created her, God would see her through. Brian and I get asked all the time if it were better that we knew so early on, or if we would have rather not known the fate of our unborn baby. Brian and I would not have changed our path for anything. It was a path that was already laid out for us. We had faith early on that Ava would be okay. We were able to research her diagnosis and interview with a team of specialists that would be caring for her after she was born. We moved into a tiny 600 square foot apartment two blocks from the children’s hospital a few months before Ava was born to keep life as local and simple as possible. The hospital we chose was Lurie Children’s Hospital of Chicago, and they gave us nothing but hope that Ava would prevail.
Ava was born on July 16th, 2014 at 11:18pm. She was perfect. Apgar scores of 8/9. There were a million people in the room waiting for you know what to hit the fan, but nothing. Stable. I was able to hold her for about five minutes. There was a peace and calmness about the room. I didn’t notice that everyone, but Brian and I, was holding their breaths. And whoosh, they swept her off to the NICU holding area with Brian in tow, to get her looked over before sending her to the Cardiac ICU at Lurie Children’s Hospital next door. About 2am they let me sneak over to the NICU holding area in a wheelchair to see her again before being transferred. I think I slept for 4 hours in my assigned room before heading next door to the 15th floor of Lurie’s to see my girl. I’m pretty sure I wheeled myself over there in a wheelchair. It is a little blurry, but I’m pretty sure I didn’t wait for help or permission. The hospitals are connected by bridges, so it’s not like I was the crazy person in a hospital gown roaming the streets of Chicago. I may have gotten a few strange looks though. Adrenaline is real. I was about 7 hours out from pushing a baby out, and I’m cruising the halls of a massive hospital complex to find my child’s room a city block away. I didn’t crash until 1 week later when Ava went down to the operating room for her first open heart surgery.
Ava was in the hospital for only 2 weeks. She had open heart surgery at 7 days old to repair her aorta. She thrived up until 6 months of life. This is when her next open-heart surgery was scheduled. Her left ventricle was showing signs of growth, so they decided to try to repair her septal defects rather than perform the Norwood-Glen-Fontaine procedures. Unfortunately, our girl struggled, and she was failing to get off of bypass during this surgery, so they had to make a couple adjustments to their plan. Too much pressure was building up inside the chambers of her heart, and the pressure was backing up into her lungs as well. They did what they could do to stabilize her to get her off of pump, but from this point forward we were on a downward slide towards heart failure. Ava was finally discharged home after 6 weeks of being in the hospital. Our hope was being crushed, but our faith was still strong.
For the next 7 months at home, we watched our baby girl deteriorate. She had little to no strength to sit up and keep food down. She would sleep 17 out of the 24 hours of the day. We fed her through an NG tube, which is a tube that goes up her nose, down her throat, and into her stomach. Her crib was in our bedroom, and I slept with my head at the foot of the bed so that I could leap up as soon as I heard her vomiting in her sleep. We would lay 3 to 4 blankets down underneath her, so we could just peel one layer back at a time after each episode. Routine visits with the cardiologist was painful. I knew they didn’t want to speak the words but there wasn’t much else they could do until she really fell off the deep end. I begged for a G-tube from her specialists to remove the tube from her nose and throat. Finally, on her first birthday, July 16th of 2015 she had surgery to place a G-tube. This was a boost of hope that maybe life would be a bit more manageable at home. It was one day at a time still. Surviving on multiple levels. Physically. Emotionally, Mentally, and Spiritually. It is all a blur.
An appointment was set to consult with Ava’s surgeons to discuss next steps. Her chart had been sent to Boston Children’s Hospital and John Locke, MD (the head of pediatric cardiac surgery in the best cardiac children’s hospital in the world) was reviewing her case to see if they had any thoughts on how they could help her. The decision was made for Ava to go to Boston for her next minimally invasive cardiac surgery because the team did not feel confident that she would survive another open heart surgery. We just had to put our faith in whatever was to come. On August 18th, 2015, I took Ava for a cardiac follow up appointment to do her routine imaging and discuss the teams plan for her next heart surgery. Similar to the 20 week ultrasound during pregnancy, I could tell the radiology tech was not at ease during the ultrasound. I was distracted by a giggling, playful one year old though. In all of Ava’s struggles, you would have never known she was sick.
We went back to the exam room to wait for Ava’s cardiologist to discuss Boston a bit more in depth. I was distracted in the exam room again because Ava was laughing about something silly, and it kept me from the unease that I was feeling. Ava was far from well, but Brian and I were doing our best to keep medicine and food in her. We were not in denial that she needed more surgery to try and optimize her sick heart, but I don’t know that we ever allowed our thoughts to believe that Ava would be in heart failure awaiting a heart transplant. As her doctor walked in the room, I knew she was about to deliver a blow. She was calm but stated we needed to make our way over to the hospital and get Ava admitted so she could fast track her to the cardiac cath lab. The ultrasound revealed Ava’s left ventricle was no longer pumping. Her little pumper had had enough. She was in heart failure.
On August 18th, 2015, when Ava was 13 months old, we were told that she was in heart failure and her only hope was to wait for the gift of life, a gift that another family would need to decide to give her when hope was pulled out from under them. She struggled but fought every second. She was on a ventilator on and off at the beginning, but when arrhythmias threatened to take her life the medical team decided to keep her intubated until that gift of a second chance at life would come.
Ava waited 111 days before getting “the call.” She was on a ventilator for 68 of those last days. Awake and playing through some, sedated but awake through others, and paralyzed in a medically induced coma to help her rest during shaky times. Twice we gathered our family and the chaplain and prayed over her. My aunt, who is a Catholic nun, was in Chicago on a layover the first time Ava was steps from heaven. We sat on the couch in Ava’s room together and she asked me what I needed. I said to her, “I just want to pray. Can you help me pray?” We prayed the rosary together. The next time Ava took a turn for the worse, I laid my head next to hers, held her cold hand and prayed. I hope I never repeat this to her again. I prayed and asked God to take her if she was suffering. I whispered to Ava that it was okay if she couldn’t fight anymore. Never did I doubt Ava or lose faith that everything would be as it should. Whatever God’s will, we accepted it. Hope and Faith are powerful things. Jamie and Daniel Heard have taught us even more about the meaning of these words…
On the morning of December 14th, 2015, we received the news that Ava would be receiving her heart that day. We didn’t know at the time, but Jamie and Daniel decided that weekend to donate William’s heart. Our girl Ava would be the child to receive the most beautiful gift from the sweetest boy. Jamie and Daniel, you have given us Hope, Faith, Love, and Life in your darkest hour. You took your tragedy and selflessly gave us a gift that all the money in the world cannot buy. You poured your love and faith into your child and now that overflows onto us. Although I know God has always had a master plan for our Ava, I believe that He gave you the strength to help Him carry out that plan. Your sweet William is “Alive in Heaven Now,” and your son has given our precious daughter the chance to live here on earth for whatever remaining years we have with her. As you told me, you asked your beautiful William, “Who made you?” and he would reply, “God made me!” The same goes for Ava the first time around and now a second time, “God made her.”
We look at photos of your family…the joy, the love, the faith, and your hope for a new home for your beautiful baby boy’s heart. Thank you for giving us joy, showing the world how to love, strengthening our faith, and giving us hope for our sweet Ava. Thank you for giving us the ability to honor your son every day for the rest of our lives. Thank you for having the courage to reach out to us during a time when most parents would shut out the world because of their unending pain and grief. Thank you for reminding us that there are people like you and your family in this world. Thank you for the second chance at life you have given Ava. God put this spirit of survival and perseverance in her and all of us.
Click here to learn more about organ donation or to sign-up to become a donor.
Written by Sarah B. Miller