Isla Everlasting

Today marks the first anniversary of Isla's death. Although we reasoned together that since she's always gone and her absence from our lives is felt every single day, today should theoretically not be any tougher than any other day. But our minds seem to be playing tricks on us.

On Saturday afternoon of last year (June 8), we were eagerly anticipating her discharge from the hospital the following Monday. She was stable enough on her IV medication to go home, where we would love on her and hope she would continue to grow and gain weight to be eligible for her Glenn surgery. It had been a couple of weeks since we learned she was ineligible for a heart transplant, and we had the gnawing feeling that by staying in the hospital we were 'burning the candle on both ends', as Dan put it. We didn't know what the future would hold, but we just wanted to take her home. I knew her IV medication was to treat heart failure, but I didn't think she was actively in heart failure, the way an aging healthy person isn't actively dying.

That afternoon, her sats began to drop. She couldn't tolerate her feeds and was very fussy, all signs we had seen before of some illness. They drew labs to determine if she had some sort of bug, but everything came back negative. I remember one of her longtime doctors standing over her crib and telling us, "I'm really worried about Isla." That afternoon she was transferred back to the CICU. We spent a fitful night at the apartment, and when I called Isla's nurse around 3am, she told me that her sats were still low, but they were tying to remedy that with a blood transfusion.

We arrived on Sunday morning to the CICU and she was fussy and sleepy. That's when they maxed out on her IV medication dosage and we really found out that the doctors were running out of cards to play. That afternoon, they told us our options: escalate care by attempting a high-risk intubation, or to keep the course we were on. We decided to stay the course. Although I've thought about it millions of times since, oftentimes with overwhelming guilt and regret, I know in my heart it was the right thing to do. Her little heart was tired, and escalating her care would have been more for us than for her. After so many months of ups and down, if it was her time, we wanted her to go in peace.

So they moved out her crib and put us in a big bed. Friends arrived with food and stayed with us for a few hours in the middle of the night. Dan paced the room and I slept, sort of. Every time Isla moved or made a noise we gave her our full attention. I didn't know when it was going to happen, but I was terrified that I would miss her last breath. Around 7am the next morning, we decided to leave the hospital, and all the discharge paperwork began. Every now and then she would open our eyes and we would lean in and coo at her, and she would close them again.

By the time they were ready to move her, it was almost noon. She was sleepy and her breathing was shallow, her color getting grey. We decided to stay put, and we closed the door to our room and drew the blinds shut. The last glimpse I had at the monitor said her sats were in the 40s. That last hour seemed to drag on forever. We told her we loved her and that she could go when she was ready. Several times. But she remained stubborn to her last breath, in true Isla form, and held on.

I remember sitting on the bed, watching Dan hold her. Her favorite toy (aside from Ms. Hippo, who I had left at the apartment) was her turtle. From the last month I was pregnant, we'd put her little blue turtle on, which cast blue moving lights on the ceiling and played a lullaby. She always slept really well with it next to her in the crib. We turned on the alternate sound, white noise that was just crashing waves. It runs for 15 minutes, and each time it stopped, I pressed it to start again, wondering if it would be the last time she would hear it.

I finally took out all her electrodes and monitors and breathing tube. The last peep she made was when I pulled her feeding tube out of her nose. I asked Dan if I could hold her, and we switched places. I told her that every single thing in the world, all the medical equipment and Ms. Hippo and every single little cell in her body was made from star dust, and that we all came from the same place and would end up there together.

At 1:01pm she took her last breath, in my arms, free of all the irritating medical equipment that had been stuck to her for so much of her life. It was sad and magical watching her chest rise and fall for the last time. We both started crying the moment her little chest settled.

We hugged her, changed her, bathed her, and about half an hour later told the nurse. It was our last little act of defiance. When we took her off the monitors, everyone stressed that we had to tell them immediately when something happened. Waiting that time felt right. Afterwards, we held her for a couple hours as doctors and nurses trickled in to say goodbye. Many were crying. I felt pretty dried up by that point, and in a daze. I remember pulling her from my shoulder and seeing that a bruise was forming on her cheek, and her long eyelashes were crumpled from being smushed against me. That's when we first felt it might be time to go. We dressed her in a ladybug outfit with ridiculous lacy pom-pom socks and covered her in kisses. We left her turtle with her, which the hospital and later the funeral home took great care to return to us. I kept deciding to leave then doubling back. We didn't know what to do. Finally the nurse that had been with us all morning hugged me and looked straight into my eyes and said, "I'll take good care of her now. I won't leave her side." I guess that's what we needed to hear. So we kissed her again and held hands and left.

I want to remember all the good times, and not this last 48 hours, but in doing so I would lose an important part of her life. All my fears of her dying in the hospital turned out to be unfounded. She was peaceful, we were surrounded by supportive people who knew what to do and how to act and what to say, and it was her home. I'm just glad we got to send her into heaven, or wherever, without any medical shit stuck to her, and without any doctors or nurses in the room. Whenever I second guess our decision not to escalate her care, I consider what it would have been like if we lost her in the midst of an unsuccessful intubation attempt and I'm glad it happened the way it did.

As we get through this first anniversary, I keep remembering my favorite quote from Tuck Everlasting, the novel which I finished reading to her the morning of the day she died. It says something like "Dying's part of the wheel, right next to being born. You can't pick out the pieces you like and leave the rest. Being part of the whole thing, that's the blessing." Isla's wheel was tiny, and it spun fast. But forgetting those last miserable couple of days won't make losing her any easier. I feel blessed to have been a part of it. Parents should never see their children die, but if it has to happen, being together as a family with beach sounds and a calm environment is the way to go. I'm grateful that she told us when she was ready, and grateful that we were able to look past ourselves and listen to what she needed. Most of all, I'm grateful for all of you, who have laughed and cried with us all these many months and accepted and supported our decisions. Our little angel knows how well she is loved!