Ava’s story begins on July 8, 2016.

Leah’s pregnancy with Ava was normal as far as the medical community was concerned. Ultrasounds, Doppler readings, the many doctor appointments- all normal. The only real issue we ever had was having a hard time finding Ava’s heartbeat on our Doppler at home which can be tricky. One thing was for certain though. Ava moved. A lot. Every day. That is why when Friday the 8th of July came along we had no reason to assume anything would be out of the ordinary. This was on top of the fact that at around noon on this day, we received test results from our genetic counselor that Ava was completely fine. She had none of the genetic abnormalities that parents have the option to test for.

The OBGYN appointment was supposed to be a quick, in and out, routine 24-week appointment. We arrived at the doctor’s office around 4:30 or 4:45 in the afternoon. We were going to see a movie after that. We sat down in the waiting area and were eventually brought into an exam room. One of the assistants got the Doppler and started checking for Ava’s heartbeat. She was having trouble for about 10 or 15 minutes. She said she could find it, but Ava just would not stay still. This was still no reason to worry because we knew from experience our daughter loved to dance at an early age. The assistant said it would be best if we just had an ultrasound performed so we were taken to a room nearby.

The ultrasound technician did what she always did and squirted the gel on Leah’s belly and started looking. After only a few minutes she walked out of the room and said she would be right back. We asked why but she did not respond. She returned with another ultrasound technician who said she was there because she was “another pair of eyes.” She looked at the monitor and said, “I agree with you.” They both walked out of the room. Leah asked again what was wrong and they just said, “It would be best if Dr. K came in.”

As soon as Dr. K entered the ultrasound room our world was on its way to falling apart. With only a few sentences and calmness that still bothers us to this day, she said that an ambulance was being called because we needed to go to Bronson (the hospital) right away. We asked why and she said it was because our baby’s heart rate was very low. We asked how low. She said it was 56. It was at this point we both were in “full panic mode.” We wanted to know what was going to happen and once again with that irritating calmness we were told, “worst case, we will just deliver you.” At 24 weeks? Yes that would be the worst case. Our hearts were racing as were our minds having no clue what was to come. The ambulance arrived and off we went.

We were taken directly to labor and delivery at Bronson. Leah was swarmed by several nurses, another OB doctor from our office and whoever else was in the room. Everything was happening so quickly. Monitors were put on Leah’s belly to check for Ava’s heartbeat. The trouble was Leah was so distressed they were finding her heartbeat which was in the 120s or so. But once they figured this out and found Ava’s heartbeat, it was dipping into the 40s. From the moment we arrived at Bronson, it was already mentioned an emergency c-section was likely. As time went on, which from the moment we arrived at Bronson was only a matter of minutes, the decision was made that Ava had to be delivered.

Leah was desperately insistent upon no one delivering Ava, but her doctor insisted that if that did not happen that we would lose her. As these decisions were happening Leah’s clothes were being removed, she was having needles put in her and she was having forms shoved in her face to sign. Before 6:00 PM, Leah was already prepped for surgery. Leah had a brief conversation with me (Ryan) right before entering the operating room and then she was taken away.

At 6:01 PM, our daughter Aveline Mae was born. She was pink and she was moving, which was a surprise to everyone because of their expectations of a disaster. The NICU doctor examining Ava still couldn’t figure out what was happening, but it was only a short amount of time as they were working on Ava in the operating room that he suspected she had a heart block. We of course had never heard of a heart block and after hearing it for the first time we independently assumed it has something to do with arteries being blocked. This was not the case. Maybe that would have been better. Leah was still under anesthesia and would be taken to recovery. Ava and I went to the NICU where Ava was worked on for about another 45 minutes or so. Ava still had more testing that had to be performed at which point I was told that I could wait and visit with family until I could see Leah.

We were able to see one another by around 8:00 PM or so. She was in quite a bit of pain and we both were scared for our daughter. The NICU doctor, Dr. P came and saw us in recovery after the testing they wanted to do was complete. This was an unpleasant conversation for us to experience. We never really had any sort of tough medical conversation in either of our lifetimes. Dr. P explained that Ava had third-degree heart block. Basically, this meant that the electrical system in Ava’s heart was permanently broken. The top and bottom chambers of the heart should be working together via electrical impulses from various nodes in the heart. “Communication” between the top and bottom chambers of the heart was irreversibly destroyed. Ava’s low heart rate was due to the natural contractions her ventricular muscles would be performing irrespective of any electrical impulses or any activity in her atria. This heart block only occurs in 1 out of 25,000 pregnancies.

This was only the first portion of the conversation we had with Dr. P. The last part dealt with the fact that she was born at 24 weeks, which depending on who you ask is the absolute earliest any doctor ever attempts to deliver a baby. Regardless of her heart condition, she was facing a lot of odds stacking less and less in her favor. Dr. P was a more seasoned doctor who did not carry a whole lot of optimism. Without much of a detailed conversation, he painted a rather dismal picture of Ava’s likelihood of survival. After his conversation with us, we waited until we had the chance to see Ava together for the first time.

Around 9:30 on the night of the 8th we were both able to see Ava together. We both were in such a state of shock that none of it seemed to be real. Leah was confined to a stretcher having come straight from recovery and Ava was inside her incubator. Through a bit of maneuvering Leah managed to get close enough to hold her daughter’s hand for the first time. We both were asking tons of questions when we were able and there was more helpless watching than either of us would have liked. Over the course of the next day through the evening of the 9th, Ava met many of her family members: her grandmothers, her great grand mother, her grandfathers, her uncles, her aunts and her cousins. She had an entire family waiting and praying for her survival.

During this time period between when we first saw Ava and her many visits from family, her condition was actually very stable. He heart was doing well (as well as it could be) and all other vital signs were “what they would expect” for a baby born at 24 weeks. We had another conversation with a specialist that knew extensively about heart block and specialized in pediatric cardiology. Through what felt like a classroom seminar on third-degree heart block and the many questions asked, we learned that there was no reversing Ava’s condition and that the typical treatment for babies and/or young children is implantation of a pacemaker. Unfortunately for our daughter, she was too small to have such a procedure. She would have to wait until she weighed at least 1,000 grams for that to even be a consideration at which point she would be transferred to University of Michigan. When Ava was born, she weighed just 665 grams. She should likely lose weight after birth and it would be weeks before she would be of a weight where a pacemaker was an option. The specialist did not necessarily carry a pessimistic view of Ava’s chances, but there were a lot of questions we wanted answered that she simply couldn’t. We just wanted to know that our daughter was going to make it and that she stood a fighting chance. All we were told was that she could end up living a completely normal life. But that’s pretty much saying that anything’s possible.

After that conversation, Dr. P had a talk with us about all of things standing in Ava’s way as a result of her premature birth. This was a much more in-depth conversation about her chances ignoring the fact that she had heart block. All-in-all, he gave her a 50/50 chance of survival. But with that survival came uncertainties about her development and the many challenges she could face in life. We didn’t care though. As long as she could make it.

Returning to the evening of the 9th, right before we were to return to Leah’s room for a while, one test result came back that was slightly off. Something related to her nutritional supplementation was abnormal but not enough to cause alarm. We were told an adjustment would be made to her nutrition but we also did not really feel like there was anything to worry about. We knew the nurses checked Ava’s blood gasses on a regular basis so the next check was at 1:00 AM on the 10th. We returned to Leah’s room and we set an alarm so that I could call and check on her after the results came back.

The alarm rang and I was very reluctant to call just because of the lack of sleep we both were experiencing. I was so tired. I made the phone call anyway. The nurse taking care of Ava eventually let me know that Ava was not doing well so I went one floor down to the NICU to see her while Leah rested. A conversation with the doctor on call, Dr. D led me to believe that Leah needed to come down with me immediately. The doctor told me that her blood gasses were starting to cause alarm. She explained that Ava’s blood should always stay relatively neutral and that anything below 7.0 was not good. Ava’s pH at the time was 6.7. Anything that could have been causing the problem was being looked at but one point she made was extremely clear: If Ava’s pH did not return to above 7.0 it could be fatal. I asked how long we would have if it did not come up. Hours.

I woke Leah up and we both returned to the NICU between 1:30 and 2:00 AM. Ava just continued to get worse and worse. As parents it was our instinct to help her. It was hell. There was nothing either one of us could do. We were in shock which did not help. We were once again in a state of panic and feared the worst. Dr. D and the nurses continued to fight for Ava, but shortly before 4:00 AM it became clear that there was nothing more they could do. I remember watching Ava’s blood pressure on the monitor above her incubator drop lower and lower and lower. Ava was removed from her incubator with her breathing tube still in and placed into Leah’s arms. This was the deepest, most painful sadness I had ever experienced in my life. We both held her, taking the time we could. I returned Ava to Leah’s arms. At 4:42 AM, Dr. D pronounced Ava’s death. The most beautiful, amazing little girl– our first child, our daughter, was gone.

Why Wings of Ava Mae

Losing our daughter will be the worst experience of our lives. There is no pain that compares to it. Our hope is for the many people who don’t understand, or the many people suffering as we are, to find this to be a place of comfort and peace. This sentence is being written only 14 days after losing our daughter. We already know how much this hurts. The agony is indescribable. We are not doctors. We are not mental health professionals. This is simply our journey and in the memory of our precious daughter. We hope we can help someone in some way just by being here.