The cursor blinks. It blinks and blinks as I try to form my thoughts and emotions into words.
I didn’t realize the last time she opened her eyes would be her last. I wish desperately I could bottle her scent. I didn’t catch her last cry or yawn or sigh on video. I didn’t get a warning to tell me I was losing her. It happened before our very eyes, we had no control.
She had been doing well. Well enough to be scheduled to move rooms and go home within a few days. But on Friday, things changed. She started struggling early in the morning and continued throughout the day. She required more and more breathing support, at one point she had to be placed back on the high flow nasal cannula. It didn’t make sense, nothing explained this change. Her chest X-ray appeared the same, a heart echo revealed no changes. Blood work didn’t indicate infection or any abnormal results.
As the day turned to evening, she was stable and resting. We took the opportunity to go eat dinner. Chris wanted to go back to the hospital to tuck her in while I took Cooper home to rest. Not uncommon, and evenings like this had happened many times before.
But this night was different. On this night, my phone rang around 10:45pm, about 45 minutes after I fell asleep. Chris was calm but to the point, “Your dad and I are here. Your mom is coming to get you and Jason will stay with Cooper.”
My heart rate skyrocketed, I could hear it…I felt my pulse drumming throughout my body. It almost hurt. I didn’t follow the rules…instead of waiting patiently for my mother and brother to come, I got in the car, asked a neighbor to come be with Cooper and raced to OU Children’s.
A drive I could do in my sleep by now. A drive that became my daily commute. This drive felt different. I couldn’t get there fast enough.
I ran in. Literally, I ran through the empty, cold halls of the hospital, impatiently kept pressing the “Up” button. Never has an elevator ride seemed so long. Getting to the 7th floor seemed impossible. But in reality it didn’t take long at all.
When the front desk saw me coming, they didn’t stop me to check in, they simply opened the doors.
Those double doors I walked in and out of hundreds of times. This time, on the other side was an outpouring of nurses and doctors and equipment from her room.
I saw my baby. Only wearing a diaper but once again, covered in IV’s, lines, leads, probes, and so much more. Most importantly, she was intubated. Although she had a machine doing the work, breathing for her, it wasn’t enough. She started crashing. When her heart rate reached the 40’s as opposed to her normal 120’s, they quickly administered epinephrine. She responded well. Her heart rate went up, her saturations climbed higher and higher.
At this point, we were confused and frustrated. We hadn’t seen a cardiologist yet but the neonatologist was communicating with him the entire time. The thought was to put Audrey on ECMO (Extracorporeal Membrane Oxygenation), a procedure that uses a machine to take over the work of the lungs and the heart. This would allow her body to rest while giving the doctors a chance to learn what the culprit was. But, we were told the risks of ECMO were likely as high as opening her up and doing surgery in her state. There didn’t seem to be a choice.
Everything was set up. The baby rooming with Audrey was moved out. ECMO machinery brought in. Blood, so much blood, was hooked up and ready to go. Just about the time they were going to start, the cardiovascular surgeon, Dr. Burkhart, and the Chief of Pediatric Cardiology, Dr. Overholt, got to her room. They wanted ECMO to hold until they could have a chance to be brought up to speed and analyze her situation more thoroughly.
Dr. Burkhart operated on Audrey back in June during her emergency heart surgery and has been rounding on her daily since then. Dr. Overholt, however, was new to her case. A fresh pair of eyes.
He was handpicked to be there at just the right moment. After careful study of her heart/lung catheter procedure from two weeks ago, he discovered a game changer. He revealed to us that the culprit was not Audrey’s heart, nor was it her small pulmonary veins. It wasn’t her Dandy Walker syndrome. It was microvascular lung disease. Not in just one lung, but in both. Since her heart surgery, they assumed that her right lung likely wouldn’t last. With small, obstructed pulmonary veins on that side, it would have been expected for her to lose the lung completely at some point, living with only her left. Severe microvascular lung disease in both lungs was a new finding that Dr. Overholt discovered. His fresh eyes were able to see something different. Something no one was looking for, because as we were told, it is a miracle that she lived as long as she did. This disease in the lungs is progressive but started when she was in utero, they said.
Heart surgery to fix her Tetralogy of Fallot and to enlarge her pulmonary veins wouldn’t help her lungs. No treatment would save her life.
Plans for ECMO were put on hold. As we met with the doctors, gained a clearer picture of what was happening. ECMO would have given her body a chance to rest, but it would have prolonged the inevitable. Choosing not to do ECMO would allow us to have time with her throughout the rest of the night and next morning while family traveled in to say goodbye.
She remained sedated throughout the night. Her heart rate was consistent and, while too low, her oxygen saturations were stable. The team at OU made us as comfortable as possible, bringing in recliner chairs, water, blankets, and so much more. But sleep didn’t happen. A few minutes of rest here and there were appreciated, but sleep wasn’t important.
The sun started to rise. Another day began. Deep down I knew this was the last morning she would be with us. I knew this day was her last.
Throughout the morning, we cried over her, laughed with each other, played special music, used clay molds and made an ornament of her hand and foot prints, got her “going home” outfit all ready. Late in the morning, the team moved Audrey up to the 10th floor to a beautiful suite called the Comfort Care Room. It was very big with nice furniture. We were asked to go up before her, the ride up with her could be difficult and it was. They had to stop the ventilator during this time and needed to “bag” her manually. She quickly began to desaturate and they knew they needed to quickly get her hooked back up to the vent. Once they did, she stabled out a bit but she was battling. By this time the family had arrived. And really, it was time. She stayed with us as long as she could.
We hadn’t ever had the chance to bathe her. It is something I wanted desperately to do. And they let us. Chris and I got to clean her perfect skin with warm soapy water. To touch her soft head and see her precious back that we never really did. We cleaned under her arms and between her tiny toes, behind her ears and over her many scars. It was such a precious memory. Such an act of love. Bathing our daughter before going “home”. To be clean, to be even more pure than she already was.
We then dressed her. First, a strawberry diaper. These were a signature during her life. Never has a diaper been put on more perfectly. The velcro straps lined up, the flaps around her bottom and legs ruffled sweetly. Then, a beautiful, classic pink outfit, short sleeves and legs, with little flowers across her chest. Her chest…the very area that took her life…adorned with tiny flowers. And, of course, a headband.
She looked perfect. Beautiful. Peaceful. Without struggle. Free of grimace.
At this time, we all held her. While she was still with us. We kissed her. Wept. Hugged.
Our dear friend and Chaplain, Trisha, came to be with us. To dedicate this baby and to pray over her. She was there the day Audrey was born, the day she went into emergency surgery, many days in between, and then on her final day.
Once her family said goodbye, they gave Chris and I privacy while the extubation took place and we helped her go.
The moment the tube was removed, she didn’t breathe once. They gave her to us. A perfect angel.
We cradled her in our arms. Took her in. All of her. We loved her. We sent her to Heaven. We trusted her to the Lord. We helped her fly.
Her heart slowed. Dr. Bhatti, the incredible neonatalogist with us throughout it all, checked her heart rate. It had slowed to about 20 beats per minute.
We told our baby it was okay to go. Told her how much she is and always will be loved. That she changed our lives for the better…for good.
And then she gasped. Though it was a tiny noise, it was loud. It was final.
We all knew in that moment..we knew she was gone.
Dr. Bhatti checked her heart and confirmed it…
At 2:27pm on Saturday, August 16th, Audrey Claire Leslie flew home.
81 days + 46 minutes after she was born, she was gone.
For the next couple of hours, we simply snuggled. Family trickled back in. We took pictures with her.
I laid on the couch with her pressed against my chest and wept, smiled, and felt so much love. I couldn’t move. Not until Cooper wanted to come in.
Cooper said goodbye in the best way he could understand how…he drew a picture and showed her. He was confused and a little detached but we didn’t force anything. He saw her in her final state. We were there with her as a family.
She was clear. Her body failed her and she let us know it was time. She had not one struggle or indication of pain. She simply slept.
When it was time to let her body go, the words poured out of me without even thinking. I just said it without control…
“Now I lay me down to sleep…I pray the Lord my soul to keep…”
And He does.
I want it all back. I want her back. Heaven got the better end of the deal. I want to cradle her close to my body. I want to feel her warmth. All the warmth left her sweet body. She turned cold.
The day was gloomy and dreary, then, almost the moment she passed, the sun came out. Tears from Heaven came down for her, then the rejoice of her through those pearly gates shined with golden splendor down on us. The ones left behind.
A message that she was home. A message that she is whole, healthy and loved. Beautiful in the most perfect place.
I miss everything about her. Photos and videos can’t capture how it feels to hold her.
And I never get to do it again. It’s not right. I hurt all over. My fingertips ache, my heart seems to be missing beats, the pit in my stomach grows and the lump in my throat won’t go away.
Her room sits empty, yet so full. It defines so much about her and her life. We created it especially FOR her, once we knew her. Now, her going home outfit lays sweetly in the crib, next to her tiny wrist splints, photos and her hand and foot prints.
We now get to plan a celebration of her life. Her close family was there to send her home, and now her entire family of friends and prayer warriors can help celebrate all that she was, is and will always be.
I have so many ideas, thoughts of how to celebrate her. I want this week to go slowly, because I know after the celebration it will feel…well, I don’t know yet, but I imagine it will have an overwhelming sense of finality.
The rest of the world will move on. The days and nights will come and go.
But how do I? How do we? Faith, trust, love and sweet peace, I suppose. Just as she was at peace when she went, we too must seek this each and every day.
She will always be our girl. Our daughter. Our son’s sister. Our parents’ grand-daughter, a cousin, a niece, a great-granddaughter, a friend, a patient who was loved and adored.
We all lost her yesterday.
But she isn’t lost, she is found. In all of us. You may not have met her but she knew your love and we all help define her.
Let us all love a little better, be a little stronger, live a little braver. Let her legacy live forever in each of us. Let’s all be better because of her…for her.
When we have her celebration of life scheduled, know that we will share the details.
We don’t know what we need now or in the future, but thank you for all you have done and will do.
Our appreciation runs deep and for a lifetime.
Her story continues, as will writing to her and about her. Keep reading. Never forget.