A year ago today we planned to bring Eva home at three days old.
She was thriving so well that the social worker at the hospital was frantically looking for a flat bed car seat (since Eva was under five pounds.) I didn’t even know these existed, but they look circa-1993. For some reason there was a shortage in the U.S., and I called all the medical supply stores I could find. Our doula did some investigating. And then the amazing social worker snagged one off the loading dock at the hospital with a sneaky look on her face. Hallelujah! That car seat ended up sitting in the corner of Eva’s room the rest of our stay.
The doctor wanted to run a barium test on Eva’s bowels before we left because there were some issues on the ultrasound while I was pregnant. Although she seemed to be holding her food just fine, eating through the nasal tube, which we were starting to master. There was even a shipment of feeding supplies ready to be sent to our house.
I went with Eva and one of our favorite nurses down for testing. They tied her up tight, and spun her on a contraption that helps the barium move through so they could see what was going on. Eva cried and cried, of course it broke my heart, but that was really one of the last times I’d hear her tiny voice before she was put on the ventilator.
The results showed she had a narrowing between her stomach and intestines that would eventually require surgery so Eva could digest food properly. We could do surgery before we went home, and wait a few weeks to heal, or we could do what our original plan was and go home that day. If we went home, she would have to be admitted to the pediatric versus neonatal intensive care unit later, and we would rather have her with the nurses that know tiny babies.
It was all up to me and Joe. The choice was ours. I really can’t explain how difficult a decision it was, even though looking back it seems so easy. We have no regrets. But at the time I was in forward motion to get my girl home so we could love on her, that’s all I wanted was for her to come home and be with her family and friends.
They invited us into a conference room. Eva wasn’t connected to wires, and I tried to walk down the hall with her in my arms, but they asked me to wheel her in the bed instead. As we sat there, I clutched my baby as my tears fell down on her and we listened to our choices. We were paralyzed on what to do.
The same amazing social worker offered to buy us dinner. We chose Frisko Freeze, a Tacoma staple, just down the road. They hooked Eva up to monitors as we left her for the first time since she was born. We ate our dinner in the NICU lounge. As Joe called his dad another mother overhead his conversation and asked, “Is he talking about your baby?” I explained to her Eva’s brain malformation and her life was limited. Then she explained how her little one was having lung issues due to the prescription drug she took. She was so scared. I will never understand on my worst days how I still manage to keep it together and comfort others. I wish I just said yes to her question and walked away.
We decided to walk down the road to a local bar and talk more about our big decision. That was the first time I had been out of the hospital and it was so surreal to be in the real world with such heavy decisions.
Joe and I slept on the maternity ward that night, instead of with Eva, so we could sleep on it. When I woke early in the morning I got up and brushed my teeth and hair, then ran to see her in the NICU. I knew my choice as soon as my eyes opened. I snuggled with Eva for the last time cord free, played her my favorite Brandi Carlisle songs. The nurse didn’t know my decision but she knew one had been made.
By the afternoon we had a room full of nurses attempting to put our tiny wonder on a ventilator for surgery. They wanted us to bring our girl home to, so they pushed to get the show on the road.
We went home for the first time that night so we could really sleep before her big surgery. I raced up the next morning as Joe stayed home with Max, sitting by myself as surgery began. It’s such a bizarre feeling to worry about your child, yet know that they will eventually die, there are no miracles taking place. It went faster than expected with no complications. The surgeon did four things: open the space between Eva’s stomach and intestines, removed and repositioned her malrotated intestines, removed her appendix and placed a g-tube for feeding. To us, this was comfort care, providing Eva the best possible ability to digest her food. The opposite of that would have been starving to death—we couldn’t live with that one.
Eva recovered from that surgery. Two weeks and two days later a barium test (and bowel movements) proved it.
I share all of this to get it out of my head. I share all of this because I know another parent can relate. I share all of this because this is our story, it’s hard and sad, but because it belongs to her, it’s beautiful too.