This is Part Two of the mini-series “Welcome to Motherhood.” Did you miss Part One? Read it here.
After several wrong turns, a desperate phone call to the hospital, and trying to describe unfamiliar landmarks to two different people, someone figured out where we were and how to get us to the hospital. In my hormonal sleep-deprived denial, I couldn’t think about Elli being sick. Instead, I worried about the who-knows-what infecting everyone else in the packed waiting room and fixated on my theory that my baby just needed to figure out nursing. When the registration staff told me to sign my name and write “mom” on the consent forms, I bristled and wrote “mother” instead. I covered Elli and her baby carrier with a blanket even though I knew that germs are infinitely smaller than the weave of a blanket. Still, I felt better sitting beside her covered with that flimsiest of barriers. I knew without knowing it – all my illusions of control were melting like fog in the sunshine.
We didn’t wait more than 5 minutes before we were called back to a room. I was ignorant enough of medicine not to find that unnerving. (I think it’s clear by now that I was a denial pro.) Next thing I knew, a parade of nurses were taking turns poking needles into our baby while she wailed. I hugged my legs into a fetal position on a chair across the room as I watched in agony, vowing silently that I would get her out of there and we would live like gypsies, never seeing another traditional doctor again. I didn’t understand why they kept trying to thread an i.v. into her veins when they told us they were getting blood to test her bilirubin level (for the jaundice). I didn’t know what to do in the face of what appeared to be unnecessary torture. Eventually, they settled for a tiny tube of blood and maybe a dozen bandaids all over her arms and legs. “After all that, no i.v.,” I thought bitterly.
After a far less traumatic chest x-ray and EKG, the ER doctor paged a cardiologist and moved us into a different room, a better-monitored one. Again, I missed the significance of this. Instead, I was thinking how woefully unprepared I was to be away from home for so long just three days post-partum. Our daughter’s nurse took me under her wing, rigging up a peri-bottle by snipping holes in the nipple of a baby bottle. She found me some snacks, brought me lots of water, and when the cardiologist told us she needed to do an echocardiogram of Elli’s heart, the nurse sent us to grab a real meal in the cafeteria. At first I thought, “I can’t leave my baby!” but that was silly. She was surrounded by doctors and nurses. She couldn’t be in better hands.
An hour later, we slipped behind the curtain into Elli’s still-dimly-lit room. We sat and watched the doctors (another had come down since we were gone) study the ultrasound screen. Our nurse whispered that they had inserted a central line into Elli’s belly button, using the vessels that connected to the umbilical cord, and now Elli was getting fluids and medication through it. This was much better than an i.v.
I froze as we heard the doctors think out loud.
“I think this vessel goes over here,” one said, pointing at the screen.
“But if it does, then where does this go?” the other asking, pointing to another place on the screen.
I couldn’t think. Scott called our families and our pastor. “We’re at Children’s with Elli. It’s serious. We don’t know when we’ll be able to take her home. We’ll know more after we talk with the doctors.”
Then it happened. The doctors introduced themselves. They told us that Elli needed to be admitted to the hospital. Her bilirubin levels were very high, and she had several congenital heart defects. They didn’t have room for her in the cardiac intensive care unit (CICU) that night, so they would move her to a bed in the newborn intensive care unit (NICU) as soon as a space was ready. They would transfer her to the CICU when a room opened up.
They stood. “Let’s go somewhere we can talk, while the nurses get your daughter ready to move up to the NICU.”
Following directions was all I could manage. We trailed behind them as they led us to an empty room in an empty quad of the ER. They drew pictures that looked nothing like the heart structure I studied in college biology.
Elli’s heart defects were an incredibly unusual combination. She had one huge trunk instead of a pulmonary artery and an aorta (which explained why the ultrasound technician had been unable to get the picture she wanted), the valve on that trunk was severely deformed and leaky, her aorta dead-ended, she had a huge hole in between the main pumping chambers of her heart, and her entire heart was enlarged. The only way blood was getting to her lower body (because the aorta dead-ended) was through something called the ductus arteriosus, which all babies have in utero but which closes within a few days of birth. The doctor told us that her ductus was closing, but they were giving her medicine to keep it open until they figured out what to do. Then they said that if we hadn’t gotten her to the hospital that night, she would have died at home. My mouth went dry as I remembered how badly I’d wanted to take her home.
We asked what they could do with her heart the way it was. “Our team needs to look at her echo and talk before we will know. But our initial impression is that her heart is too complicated to repair. She will probably need a heart transplant.”
All my carefully-crafted denial slipped from my grip and shattered, silent, on the floor.