Lilly is Very Much Loved

Lilly grew daily; she could finally fit in the frilly pink doll’s dress and bonnet gifted by my stepmother-in-law. She could wear preemie diapers without taping around her waist to hold them up. At three pounds, I could hold her like a real baby. Her new code card read: “Lilly is very much loved.” She was moved to the back of the NICU room, no longer needing to be within immediate access of the code team. I bathed her in the hospital wash basin, performing little tasks that gave me a chance to be a mother.  

One morning, the NICU nurse told me that she would begin teaching Lilly to drink from a bottle.  Born so early, Lilly didn’t have the muscle development or the natural reflexes to suck on a bottle and would have to be trained.  Taking a nipple with an ounce of milk, the nurse would gently place the nipple in Lilly’s mouth to trigger and reinforce the suckling instinct.  I was warned that it might take weeks to remove the tube feeding line that protruded from her nose. As I left for work, the nurse told me I could have a turn training her to bottle feed when I returned. 

After work that day, I scrubbed up and went straight to see Lilly. The nurse approached me and handed me a baby bottle filled with two ounces of milk. “Here,” she said, “feed your baby; she’s been crying and waiting for you.”

“Is she drinking?”

“I tried putting the nipple to her lips, just to give her the idea, and she grabbed it with her mouth and drank it all down.”

Once again, Lilly surprised everyone by doing something no one expected. I had been warned that premature babies often develop food aversions and might need a permanent feeding tube. The nurses believed that these aversions could be common due to irritation from the ventilator, as well as poor facial muscle development. My premature brother-in-law had needed a feeding tube for several years. Lilly didn’t need time to adapt to a bottle, and the nurse had held her feeding for half an hour so I could give her a bottle for the first time. I also adapted; milestones in the NICU would be different. “Lilly thinks she is a big girl,” the nurses would repeatedly tell me.

The NICU nurses ran their unit with strict rules. They were meticulous to the point of obsession, ensuring that everyone entering the NICU scrupulously followed the mandatory hand scrubbing. A suspicious sniffle meant exile. When I cried at Lilly’s bedside, I had to be cautious not to seem sick while wiping away tears and sniffling sobs. Cough once, and you were immediately sent out. Nothing could be brought in without the nurses' approval. Even I, as a nurse, was watched, monitored, and scrutinized at every interaction with Lilly. I was gradually allowed more caregiving tasks and opportunities to bond, but infection control always came first. Kissing? Forget it; the NICU nurses will pounce like a duck on a June bug. I was always aware that I was the intruder in the NICU world. 

Despite all the safeguards and vigilant nurses, the NICU somehow became infected with Klebsiella pneumoniae. Several of the babies, including Lilly, became seriously ill. Lilly’s weight increased from three pounds to almost seven pounds within three days due to swelling caused by fluid retention.  As the infection raged in her body, the cells released fluid.  The swelling became so severe that she required a catheter because she was unable to pass urine. Lilly was still on a feeding tube to supplement her intake, but now she was too weak to drink from a bottle.

Klebsiella is a Gram-negative bacterium often found in human feces. One unwashed or poorly washed hand after using the bathroom can cause suffering and death in the NICU. Somebody’s carelessness was killing my baby. Among the many people coming in and out of the NICU daily, the angel of death was unleashed.

Every morning, I called when I woke up to check on how Lilly had fared overnight. Every day, the nurses reported bad news. “Lilly is back on the ventilator.” “We had to increase the ventilator settings.”  Then it was, “When we pulled back on the feeding tube to check for residuals in her stomach, we found blood in the formula. She isn’t digesting food.” 

I had enough medical education to know what was happening at a cellular level in my child’s ravaged body. I pictured the worst, that hemolysis (the destruction of red blood cells) meant that the infection was causing Lilly’s red blood cells to break apart. I completely discounted obvious choices such as irritation from the feeding tube or anemia.  I was walking a tightrope, trying each day to hold myself together to take one foot forward.  

IVs were inserted, monitors once again surrounded her, and she lay there listless, no longer wiggling or fighting, no longer the “big girl” she once was. I had allowed myself to become attached to another human and bond; now my punishment for this hubris was watching her fade away from me. Everything I had ever loved, human, animal, or object, had been taken from me. Now, because my body failed to keep her safe, my daughter was being taken as well.

George tried to step up. “You gotta eat something and get some sleep. I’m afraid that if something happens, I will have to take two bodies back to Minnesota.”

When I was a child, my dad or the neighbors often brought me orphaned or injured animals to nurse back to health. Each time my dad handed me a new animal patient, he said, "Now, don’t get too attached; if it dies, it dies. When your number is up, your number is up.” My mom would temper his words with, “You can only do your best; that’s all anyone can ask of you.”

But I had gotten attached this time, and I could do nothing to help my daughter. This was no bird with a broken wing or an orphaned fox with a crippled leg. This was my child, blood of my blood, the beloved and very beat of my heart. It was a cruel joke that I had created this ray of light in my life, and now it was being extinguished.

As the days passed without improvement, the nurses advised me not to stand by Lilly and cry, as my distress caused her vital signs to become erratic. I couldn’t stop crying, and her heart rate would send the monitors into a frenzy.  Lilly needed rest to fight the infection, so I had to stay away.  Being kept apart from her drove me insane. George would stop by to see Lilly for a few minutes in the evenings before going to work and call me with a report.

I called the NICU nurse’s station multiple times a day and was told, “She’s holding her own.” I moved through my daily routine like a robot. My nights felt endless; when I finally fell asleep, I had nightmares of Lilly being abused or taken away from me, and I couldn’t reach her in time. I dreamt of Dad riding our old mare Daisy, with the stallion Billy beside him, coming for Lilly. Some nights I didn’t sleep at all and lay in bed, curled up in a ball of pain and grief.

After several days, I couldn’t stand the separation, and I found myself standing at the foot of Lilly’s bed, tears streaming down my face as I stared at my bloated, unmoving child.  I could no longer stay away.  I could not let her die without me by her side.  If the ancestors came to take her home, then I would be there to argue for her life. The NICU doctor and Lilly’s nurse approached me, the nurse carrying Lilly’s chart.

“I want to try a new antibiotic that is not approved for neonates or pediatrics. I need your permission to proceed,” the doctor said, handing me a clipboard and a pen.

I had already signed permission for Gentamycin during the earlier infection, knowing that it could cause deafness. I rationalized that being alive but deaf was not a horrific consequence to face in my daughter's situation. No matter the severity of the effects of this new drug, I was willing to take any chance to save Lilly.  After he refused to sign the surgical consent form, the staff no longer came to George for anything requiring a care decision. Without a second thought, I signed the permission form.

I recognized that I should read the paperwork carefully. Maybe I did, but to this day, I have no recollection of what the medication was or even of reading the release form. All I remember from that moment is that after the doctor walked away, I asked the nurse, “Is this it? Are we going to have to let her go?”

The nurse touched my shoulder gently and replied softly, “Tonight will be the deciding factor; it all depends on how she does through the night.” 

My daughter’s life depended on the next twenty-four hours. 

With one last look at my child, I went home. George was at work that night, and I was alone with my fear.  I called Donna and, in between sobs, told her about Lilly’s condition.  Donna spoke with me, comforting me until I fell asleep for a few hours.

When I woke up and saw daylight, I called the NICU. Lilly’s nurse told me, “She did okay overnight, and she’s stable for now.”

  She had survived the night. There was the faint whisper of hope in the wind.

At ten a.m., three hours after my last conversation with the NICU nurse, I received a call at work. Charting at the nurse’s station, I picked up the call immediately when the receptionist paged me overhead. It was the same NICU doctor who had obtained my consent for the new medication. After confirming my identity, the doctor bluntly said, “We took Lilly off life support.”

I screamed “NO” into the receiver.

My mind raced. I hadn’t been there; I didn’t say goodbye.  I didn’t hold her. She must have thought I abandoned her. She died alone. Nausea from the emotional blow swept over me; I wanted to vomit and throw the phone in rage.

The doctor, realizing what I thought she was telling me, quickly added, “No, no, no—not that! Lilly pulled out her ventilator tube, so we put her on oxygen. She doesn’t need life support anymore; she’s better!”

I was crying and laughing as she explained that an hour ago, “Lilly pulled out her ventilator tubing, and she started crying and wiggling around. She tried to pull out her IV, and then, when she couldn’t, she bent her elbows, pinching the lines and setting off all the alarms. We had to restrain her arms so she would leave the IVs alone. She even got her oxygen sensor off her foot again.  She’s on a quarter liter of oxygen through a nasal cannula, and her levels are stable.”

Lilly was back, and she was angry.

That afternoon, when I got off work, I was overjoyed to see her furious little red face. Although she was still swollen, the nurse assured me that it would subside soon. No longer lethargic, Lilly was kicking her feet and fighting against the tongue depressors taped to her arms.  “If we take those off,” the nurse told me, “She bends her arms and pulls at the IVs and sets off all the alarms.”

Lilly had her pacifier, but her stomach was still too weak to digest food. We had to wait until her stomach started working again, and the nurses could no longer pull back on the feeding tube to check for residuals from the last feeding.

Lilly was furious; there's no other way to describe a baby who would suck on her pacifier with such fierce determination, red-faced and squint-eyed in rage. Determined, she would suckle, and when nothing came, she would grab the pacifier out of her mouth and throw it away. Then, kicking her legs and flailing her arms, she screamed until I put the pacifier back into her mouth.

Swaddling was attempted, but she wiggled out of her bonds each time. Wrapped like a burrito, she squirmed until she could pop a boarded arm out of her bonds.  Triumphantly holding one tiny arm in the air, she continued moving until all her limbs were free.

She was still a negative two months from birth, still a fetus. However, my ancestor’s famous temper was strong. I like to think her fierce, tough guardian angels played a role in Lilly pulling off this miracle. One NICU mom lost her daughter to Klebsiella, and other babies suffered severe setbacks. Lilly had come through unscathed. I told George, “This baby is meant to be here for a reason”.

When I left the NICU that evening, I called Donna to let her know that Lilly would be okay. Donna responded, “Of course she is, Mom told me.”

Donna explained that when I called the previous night, she had been on a business trip. After our conversation, she was restless and worried. She decided to take a long shower to relax before trying to sleep.

  Stepping out of the shower, Donna saw her reflection in the mirrors. “I wasn’t wearing my glasses, and the mirror was all fogged.  I thought to myself, damn, this Atkins diet is really working! I look skinny, very skinny, like I’ve never looked before.”

Admiring herself, she realized it was not her reflection she was seeing. “It was Mom, I swear to God it was Mom in the mirror!  Then just as soon as I recognized her, she disappeared, and I was standing there.”

Donna was probably just tired and stressed, blind without her glasses, and looking in a fogged-up mirror. But then she said, “And this afternoon I was driving home and listening to the radio. The music got low, and Mom said, ‘The baby is okay.”

We both started laughing, remembering how Mom used to mother us backward. Any concern for one of us was always brought up with a sibling.  It made sense that if my ghost Mom worried about me, she would go to Donna.  Even in the spiritual realm, Mom was uncomfortable with direct emotional displays.

Was it real? Did Mom return to comfort me through Donna? I’m not sure. I don’t believe in ghost hunters, but I do believe in the strength of love. Indeed, I think in my mother’s determination; if anyone could walk back through the valley of death to bring a message, it was Mom.  Mom could walk through hell on a Sunday if she were determined enough.  But only if there were no horses there.

Within twenty-four hours, Lilly was eating from a bottle again.  She seemed to grow twice as fast as before.  In a short time, she was moved into the NICU step-down unit. This was senior-level development and stability, the last step before going home.

  I would hear Lilly screaming as I scrubbed up, the nurses having delayed her feeding until my usual visiting time. The new code card on her incubator now displayed larger numbers almost daily. On the card was her name, amidst drawings of flowers and bunnies, and rendered in bright bold letters, Lilly Is Very Much Loved.

It was becoming real that I was a mother. Having come close to losing her made me more determined than ever to cherish each moment with my daughter as a precious treasure. A friend from work had lost her twin sons at twenty-two weeks of gestation during Lilly’s fight to survive.  I invited her to accompany me to the NICU to see Lilly, if she felt up to it. Christine held Lilly, and when she had finished her bottle, helped with her tube feeding.  Together, we grieved the loss of her much-wanted sons, born two weeks earlier than Lilly.    

George told me that to him, being a parent to Lilly was like having a porcelain doll. He said, “We are allowed to take her out of her 'case,' hold her, and feed her, then put her away before we leave for home.”

I thought that was an interesting viewpoint. George saw her as an object, not a person. My mind couldn’t grasp the full implications of his statement. I watched him with Lilly in the NICU; when nurses and doctors were nearby, he talked to her, touched her, and held her. But if only I were in the audience, he sat silently and waited with an air of impatience. I consciously ignored what I observed; he was the only father Lilly had, and he had to step up.

Sometimes, though, the frustration built up, and I spoke out loud what I had only allowed myself to think. I think it was the day he referred to Lilly as a doll that I said the cruelest words I had ever spoken to him in our five years of marriage.

“I feel like I have two children; one is normal and will grow up, get a job, and leave home, the other is mentally disabled, and I will have to support him for the rest of my life.”

George stared at me for a long moment, wordlessly.  I knew I had struck a nerve with the depth of my anger.  He turned away from me and sat down in front of the computer. 

My inner sarcastic bitch had reared its head despite the defeat I had long felt in our relationship. In my defense, I was exhausted, depressed, traumatized, and trapped.  Despite the emotion behind the words, it was still a fairly accurate synopsis of how I envisioned my future. I dared to dream of a future for my child.  But I knew well enough by now that my husband would never grow up.