Her last days with us

Thanks for allowing Brian and I time to stop and begin to process what the last week and a half has held for us. We are ready to tell you about Liv's last days with us.

Two weeks ago Liv began sleeping more. We expected it, but just one day it happened and she didn't ever gain her energy back. As far as we could tell she wasn't sick, but I think she was starting to feel it. That was a Sunday. That night Brian gave her a pep talk. The next day we were scheduled to finally go to the aquarium (with free tickets before it actually opened for the day--HUGE thanks to Annie). We thought if Liv wasn't up to it we wouldn't take her, though we had been looking forward to it for weeks. Brian told her she didn't feel better we wouldn't go. Monday morning came and she was as bright-eyed as could be. So we rounded up the troops and left for Crown Center.Our dear friend Rachelle came to document the trip. We are completely indebted to both her and Annie for making this incredible trip so memorable. It was one of the highlights of her last weeks at home.

Tuesday she continued to sleep more, but her awake hours at home were filled with play time and enjoying the porch.

Wednesday, after a visit from the Hospice nurse Liv woke up from her nap coughing. I thought maybe she just needed to cough up the after-sleep stuff, but she just kept coughing. That night, Brian and I knew this illness would be it for her, but we had no idea how long it would take. We prayed for it to go quickly--it did. Wednesday night she did ok, and thankfully we got some sleep while her nurse watched her carefully. Thursday morning she was struggling a little more to breathe and we called the Hospice nurse to come check on her. In just twelve hours of apparent illness, Olivia's lungs were mostly filled with fluid.

That morning Brian and I struggled with our decision to keep her home. We had turned off her feeding pump and her machine that tells us how well she is breathing-- it was just alarming all the time anyway. We tried keeping her at home, but the morphine regimen was stressful for us to maintain--every hour counting her respiratory rate and deciding if she then needed more medication. By the middle of the day Thursday we decided to take their open room at the Kansas City Hospice House. We are monumentally glad we did. After transporting her in the car to the house we were met with a child-decorated room and an incredibly helpful and kind staff. They began to give morphine via sub-Q (a small needle into her fatty tissue, since they do not do regular IVs there). Olivia calmed down very well with the medicine then and Brian and I focused on just being mom and dad instead of caregivers. That night we were allowed to sleep in her bed with her and we took advantage and took turns. The pictures below are the last pictures we have of Olivia, from Thursday evening.

In the middle of the night it seemed apparent that Olivia would be leaving us soon. The nurse gave her an extra dose of morphine about 2am and we stayed up for an hour to sing to her, read scriptures, and prepare ourselves for her departure. Brian slept in her bed from 3am to 5am when we woke up again to the nurse giving more morphine. Olivia's body was trying to fight so hard, and we let her know for the millionth time that it was ok to relax and let go. At 5:30am I laid in bed with Liv and fell asleep listening to her erratic breathing. Brian stayed awake for a while, eventually giving in to heavy eyelids a few minutes later. At 6:20am I was awakened, by apparently nothing in particular. I laid awake looking at the ceiling listening to---nothing. I rolled over and Liv was gone--sneaking out in the few minutes we were not keeping watch--probably the Lord's kindness to us. After waking Brian up we took Liv's oxygen off and just stared at her, both thanking the Lord her suffering was over and wondering what to do next.

The rest of that day was mostly a blur: showering, cemetery shopping, probably eating, lots of family...about 2pm the funeral home finally came to pick Liv up from the Hospice House. Brian chose to perform his last fatherly duty by picking her up out of bed and placing her body on the gurney to be taken away. He rolled her down the hall and into the chapel, where we had a brief family prayer led by one of our friends and pastor, Kris.

Since then, there are a million people to thank, tons of stories to tell, but very few pictures. On the list of people to thank is you. Thank you, for praying, for crying, for agonizing with us. For rejoicing, for thanking God, and for celebrating Liv's freedom. Her life was very short, but incredibly purposeful and amazing by any measure. Brian and I are beyond grateful and very honored to have been the parents to Olivia Grace Key while she was here on earth. She has changed us in profound ways. Perhaps on a selfish note, if there is any memory or treasured thought, or way Olivia has changed you, we would love to hear it and celebrate her life with you. Feel free to leave a comment, please.

Olivia's death is not the end of this blog. Though it was mostly about her, and started as a way to keep people informed of her medical progress, in honor of her we decided to keep it going, to be honest about where our family is and how we are doing with life, with grieving her death, with the incredible escapades of Gabby, her sister, who is 100% her own person but like her sister in so many ways. We hope you'll stick around.