It has been so easy to write about Hannah’s life, but I’ve struggled with how much I want to share in writing about Hannah’s passing. Here goes…
Greg and I knew all along that our job was to listen to Hannah. We continue to feel that our level of intervention and care giving was right for her. Many times (it feels like countless times, in fact), we performed CPR, gave her rescue medications, waited for the medics to arrive to whisk her away in our laps on the gurney. But we also knew that there were clear boundaries for us that seemed to fit with our sweet Hannah.
As we watched the degeneration occur over months with her strength and cognitive capacities, we knew, too, that her inside was degenerating. If her once mobile hands could no longer reach to her mouth to suck her thumb on their own, what was happening to her swallow? Her digestion? Her breathing?
We learned quickly over the past month that everything was slowing down – hypotonia. Low muscle tone impacts both the limbs and outside that we see every day, as well as the inside of our bodies. Concurrent to Hannah’s smile fading, so was her ability to move food. Even though her suck and swallow remained strong, her frequent urinary tract infections, constipation and ultimately inability to empty her bladder were all symptoms of the muscle degeneration.
So, over a few days we knew we were facing issues. She didn’t poop for over a week – yikes. She ate the same, but nothing was coming out (neither urine nor stool). As I wrote about before, we put in a Foley catheter to empty her bladder – it was insane how much urine she was holding. We also started a huge dose of mineral oil to get her bowels moving (Miralax was no longer helping on its own).
On the morning of 3/21, Hannah woke, was very tired, and then had a monster poop. HUGE. Her heart rate and breathing slowed down a lot, but recovered after giving her oxygen. She never really woke, but we’d seen that before. Grandma Marilyn and Aunt Gigi were with us, as was our Nanny Anna and Wes, getting ready to go to school.
Hannah slept all morning, and we weren’t able to rouse her. This was unusual for her. Mid-day, we asked our Hospice nurse Elise to come, as well as Dr. Eldred, our pediatrician and family friend. Both were so wonderful and supportive. By this point, Hannah was breathing in a steady, rhythmic way – like a very loud snoring. Still no arousal, still no response. We decided to remove the catheter – I felt that we could always put another one in, but we just wanted her unplugged so that we could hold her. Elise suggested Greg come home to be with us.
Later in the afternoon, our nieces Carly and Rachel came by on an unplanned visit. We’re so glad they could be with Hannah a bit. Wes came and went, giving Hannah kisses. Grandpa Greg came to coach Wes’ T-Ball team practice, so he, Wes and Anna went out to the ball park. Greg came home.
I took Hannah into my arms and started rocking her throughout the afternoon. I sang to her, and had strong flashbacks of being in the NICU at Swedish with our newborn. After an hour or so, I decided to take her off of the monitor that kept beeping when her heart rate or oxygen levels would get out of range. At that point, I just wanted to be with my baby. I also removed the tube in her nose that allowed us to give her medications if we needed.
For hours it was just me and my peanut. We moved over to the sofa, and I put my feet up and held Hannah, kissing her over and over. She loved to be held chest to chest, with her head on my right shoulder, turned to the side. She was still breathing her steady, loud, raspy breathes.
At some point I began singing to her again – our song – “Annie’s Song” by John Denver. I started singing that to her hours after her birth, and ever since, it has been hers. We fondly call Hannah “Hannie”, so it felt so natural. I’d been singing it to her on and off throughout the day. This time in particular, I was singing it slow and clear, and about halfway through, I felt her exhale. I waited. It felt like forever, but it was only a short time. She didn’t inhale. After another short pause, I called for Greg, who was in another room. He came in, and I could feel Hannah’s heart beating.
Greg joined me on the sofa, and put his hands on Hannah. After a bit, her heart stopped beating. Marilyn came in and helped us understand that we might see a few coughs as her body relaxed. We felt this, and then the most incredible experience. Three times, Hannah sighed with the sweetest little sound – her voice. There was a tone to it – the tone we’d heard so many times when she was content. So soft. So sweet. So peaceful.
Marilyn came in later and we listened with a stethoscope and knew she had passed. We were quiet. We all felt so blessed to have been a witness to this amazing passing. I can’t put into words what an honor it was to hold Hannah as she gently crossed over. Unbelievable.
A shortwhile later, Wes, Anna and Grandpa Greg came home from T-ball and got to see Hannah. They burst into tears – it felt so sudden to them. After a bit, Anna and Marilyn both commented on the sunset. They went out and took some photos. The sky was gorgeous. As Auntie Cindy said, “it was like Hannah opened up a box of watercolors and painted the sky!”. So true.
We sat for a few hours together, holding her and stroking her head. I didn’t want to get up, for fear of losing that warmth. And even more, cracking open – unraveling after so much lovely time, just me and Greg talking while I held our baby.