3 Weeks

Monday, June 7th

It's been 3 weeks since Avery left this Earth. It has been the longest yet quickest 3 weeks of my life. But life has kept moving forward, so we have kept moving forward as well. Many people use the term "new normal" but that is the farthest thing from the truth there is. There is nothing "normal" about this. There is nothing OK. Everyday following Avery's death will always just be "life after heartbreak".

The last 24 hours of Avery's life have been playing on repeat in my mind, and I wanted to document it to always remember:

Sunday afternoon she had another seizure. We caught it early and were able to stop it with medicine before it got too bad. It was mild from the outside looking in, but we knew that each seizure was extremely harsh on Avery's brain and body. A sweet parent who we met in the beginning of Avery's treatment was inpatient as well, and he brought us a wonderful dinner that night. We were settling in for the night when her O2 sats dropped in the 30s and 40s. Shon and I were preparing for the end. She stayed that way for a couple of hours before bouncing back into the 70s/80s. She finally settled enough for us to try and rest. I was up and down all night watching her numbers. They would drop in the 50s and then climb back up. Finally sleep came, and the sun came up marking another night we made it through.

Monday morning, I quickly showered... closely listening for the monitors to begin alarming. After some pain meds, Shon and I changed Avery's pull up and pajama shirt. Any amount of movement seemed to cause her great pain and discomfort. Shortly after changing her, her sats dropped back into the 30s/40s. Her breathing patterns had changed. Her breathing was labored, and she was using her abdomen with each breath. You could hear it from across the room, and it was a haunting sound. She developed the "death rattle" from not being able to clear the secretions from her throat. We knew that we likely had 24 hours or less left with her.

We skipped breakfast as neither of us wanted to chance leaving the room(Shon graciously got all of our food and supplies while we were inpatient, as I refused to leave the 8th floor the entire stay). We had multiple people that had cared for and loved Avery stop by and sit with us throughout the day. While we were being present with Avery, they were being present for us, and for that we will always be grateful!

We did manage to eat lunch and a quick dinner. Just like that, it was time for shift change, and we were prepared to begin another long night. Avery's sats had improved slightly, but her heart rate had shot up into the 160s. We had a new(to us) nurse for the night which had me feeling uneasy. All of the nurses at Children's are wonderful, but in a time like that you long for familiar faces. Luckily the charge nurse for the night brought in morphine to help calm Avery's HR, and she was one of our favorites which helped ease my mind a bit.

After the morphine kicked in, Avery's heart rate finally went back down to the 140s which was improved. I was sitting by her bed watching The Voice on my phone. Shon was sitting on the couch watching his phone. I suddenly realized the room was quiet. The labored breathing we had been accustomed to all day could no longer be heard. I glanced at the monitors, and her numbers had started dropping quickly. At 8:20 pm, Shon and I held her hands as everything hit 0. She passed away peacefully. The charge nurse verified there was no pulse, but a doctor had to make the final call. I went to kiss Avery's head, and it was already cool to the touch.

I finally got to do what I had been longing to do for two whole weeks. I picked her up, cradled her in my arms, and rocked her. Shon did the same as well. The nurses and us bathed her and dressed her. We kissed her and loved her and said our final goodbyes. I tried to soak in all that I could.... the feeling of her hand in mine, the feel of our faces cheek to cheek, and the feel of her cheeks on my lips. Just two hours after she left this world, we did the hardest thing of our lives and walked out of that hospital without her.

And nothing has ever been or will ever be the same. I have never wanted so desperately two completely opposite things at the same time as I did in that hospital. 1.)I wanted Avery free from the pain and suffering of this Earth, but 2.) I wanted more time. More time was just selfish on my part. Avery hadn’t had ANY quality of life since a few days prior to going to the hospital. No amount of time would have ever satisfied me. It could have been days or months or years, and it still would have never been enough. But one day, I will have an eternity to spend with her, and it is that hope and belief that keeps me moving forward.

#brAvery

June 7, 2020 - Hiking at Oak Mountain