We had high hopes when Lily was born. I did, at least. Her heart looked fairly healthy on echo, her skull was pleasingly round on ultrasound, and she was big. And so, having accepted that we were getting a new membership to the special needs club, I was hoping for a chance to be amazing at it. I was counting on Lily to make it easy for me. No big surgeries, no scary unknown, and hope of hopes, no oxygen.
When Lily was whisked to the NICU at age 20 minutes, I felt those plans slipping away. Still, she graduated quickly from the little room at the hospital where she was born and was soon a big fixture in the feeder grower area, sunning under her bili-lights and taking milk by bottle. I thought she would be home soon after I was discharged. Leaving the hospital without her was so sad and felt so wrong that I have blocked it out. But I remember going back when they called in the night to say she had aspirated and would be taking no more milk by mouth. Back in the small NICU room, in the back with the sickest babies, I just wanted her transferred to the big hospital, where they would fix everything. Where they would declare that comparatively she was so healthy-so big! - and we could go home.
Lily transferred. She went to the NICU, and soon I was wondering why I thought this would simplify things. They looked closer. They saw how fragile she was, even comparatively. The NICU doctor talked to me, and said her death was a matter of now, or later. I nodded and thought "Well, isn't yours too?"
When Lily did come home, with a g-tube and oxygen and a terrible diaper rash, I thought we had made it. I thought finally our journey could begin. I could work hard with her on positioning, and tummy time, and physiotherapy, and all those things I should have worked harder on with Charlotte. Yet before I knew it I was calling across the driveway to the approaching therapist that Lily had stopped breathing and we were going to the hospital. And bringing her pulse ox downstairs to keep on her at all times because she was so sensitive to position changes. We kept taking her back to the ER, to the PICU, where she would lay quietly for a few days in one of those cage-like cribs, hooked up to even more tubes than usual and then come back home with no new miracle. I knew she was having seizures and when we finally caught one on EKG during a respiratory related PICU stay, I pulled out ice cream cups to celebrate. Now we could fix her. Now the real journey would start.
The meds seemed to work briefly. We saw the neurologist who mostly just shook his head. I stopped taking her up to the ER and instead made frequent trips to the doctor's office to get her suctioned. It took forever and I had a two year old, a six month old, and Lily with me. But at least we were together. Finally, during one of those doctor visits I mentioned hospice, then burst into tears. It felt like giving up.
But if it was giving up, it was what Lily needed. I stopped worrying so much about the journey and focused on Right Now. I gave her long coconut oil baths and massages. We played music. We let hospice bring us her meds and a suction machine. When her alarms went off in the night and she turned blue, fear would grip my throat and I would start thinking of how much to pack for the hospital. But instead, we would hold her, and pray, and eventually go back to sleep. It wasn't easy, and sometimes it still felt like giving up on her. But it wasn't.
Eventually I stopped hooking her up to her monitor except at night. Suddenly she looked pinker and my stress level dropped. The seizures, however worsened, and each one seemed like it was the end. We had hospice support, and family support, and dinners brought to our door.
I brought Lily to bed with us. I kept a hand on her all night long. I smelled her head constantly and took pictures of her big feet.
One Sunday morning just as we were waking up, it seemed like Lily was ready. Her oxygen went down down down. She was sleeping. We were crying. I began to panic, it seemed scary and wrong to do this without the hospital support. I wanted staff, and curtains pulled, and someone in scrubs with authority to tell us what to do. But the feeling passed, and I tried to be brave, even without a doctor there.
We all sat on the bed, even the babies. We were in pajamas. We were next to the window. It was sunny, and quiet. We sang to her, Consider the Lilies. And Lily, slowly, left one home for another.
Hospitals may be for healing, but when it came time for Lily to be fully healed, we had all we needed at home.
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