Eli's Story, Part 2


A Heart Torn in Two

I never wanted to be a doctor or a nurse. I wasn’t the kid who liked to play pretend to be one, either. Needles, blood, white-walled rooms, and medical jargon never interested me. In adulthood, I rely on my friends who are nurses for those middle-of-the-night “my kids are puking” or “what is this rash” kind of questions. Hospitals make me nervous and jumpy, and I avoid them at all costs.

Of course, God seemed to have others plans when He gave us Eli. For the entirety of Eli’s life, I was his nurse, his advocate, then his cuddle momma while spending almost three months in a hospital. Not only was my son a very sick baby, but he had a very rare disease that most of the hospital doctors, residents and nurses had never heard of let alone seen. While in the NICU, Eli was battling an irregular temperature, irregular sodium levels and fluid output, the inability to feed through his mouth, fluid from his brain draining, and seizures. He had to be handled very delicately, and it was a 24/7 job to take care of him. I became the nurse I never wanted to be very quickly, and my discomfort of hospitals changed, too.

In addition to trying to learn to be Eli’s advocate, my heart always torn with wanting to be with Eli in the hospital or being with my two other children, living their normal summer life back home, two hours away. When I finally designated time at home, I was constantly checking in on Eli, and when at the hospital, I was constantly managing my girls’ schedule. I felt like a really bad, untrained juggler—balls were being dropped everywhere. I had a deep sense that, no matter how I tried, someone or something was going to lose. I was hustling moment to moment, day by day. I was exhausted both mentally and physically (still healing from my C-section), anxious, frustrated, fearful, and stressed to maximum capacity. The amount of pressure I put on my myself was crazy high, and you can imagine the collapse that was coming.

Life in the NICU

I had to carry Eli’s medical notebook around with me like it was the Bible, a precious sacred artifact that contained all medical knowledge about my son. His lack of brain formation created confusion with his care, since he did not behave in typical, medically-known ways. At two weeks old, Eli started seizing in my arms, and the medical staff did not believe me. It took three different EEGs to show that, yes, Eli had begun to have seizures, and no, the seizures were not looking like other kinds they had seen before. It took weeks to find the right doses of different medications to calm the seizures. Eli’s temperature irregularity drove his poor nurses crazy because one minute he would need to be bundled with several blankets and a heating lamp, then the next minute he would need to be stripped down to a diaper. He was regularly poked and prodded for blood tests, which produced some glorious wails from my son.

By the time he was six weeks old, he was scheduled for a G-tube surgery, his shunt needed revision, and his seizure medication was changed three times. Two weeks later, my increasing worry and fear could be seen in the words I wrote before his G-tube surgery:

"Now I sit beside Eli’s crib in the NICU. He is sound asleep with monitors attached to him and an IV for surgery tomorrow in his head. I’m still grateful and it is peaceful here, but my smile gives way to tears. I’m fighting the fear of my little fighter going to another surgery. This one is so minor compared to shunt surgery at not even 24 hours old, but he is going to be intubated and put under again. He will have a hole in his perfect tummy and a tube sticking out for the next month so I fear this new contraption. I fear he won’t breath on his own again which everyone here says not to worry about. I fear something going wrong. I fear . . . so I sit here next to him and pray. I played 'Be Still' again and let the words wash over us—'Be still and know that I’m with you. Be still. Be still and know.'"

The G-­tube surgery was supposed to be the final step towards bringing Eli home. This was always our goal—to bring our son home. Home to his sisters, his Cubs-themed bedroom, to real life outside of the hospital. But Eli’s continued seizures made that difficult. The date was pushed back several times as his team struggled to find the right combinations of medications. Then one ordinary day, the breakthrough came when my little fighter did amazingly well with his G-tube, and his seizures calmed. I remember the nurse marching back to his corner of the NICU to tell us Eli could go home within the week. AHHHH! Now the scramble began. Are we ready for this dream? Is his room ready? Do we have the right kind of car seat for him? What kind of nurse care will he need at home? Hospice? Do we need hospice? Are we sure he is okay to travel? Are they are out their minds to let him come home?! Are they letting him come home just to die? Wild thoughts and questions flooded our minds as we quickly prepared for all of our children under one roof.

A Complete Family

When Eli was born, my daughters were 6 and 2 years old, so only the oldest could come to meet her baby brother in the NICU while the youngest tried to wait patiently at home. One of my hardest and sweetest memories was bringing my oldest to visit her baby brother for the first time. Her little hand tucked in mine as we walked the long hallway to the very last pod and the very last bed. Her eyes wide from the machine sounds and the other babies crying. She didn’t say a word until she reached him. Then a slow smile crept on her face as she peered into his crib for the first time. My oldest intertwined her slender fingers with her chubby little brother’s. She was a mix of love and hesitation. Questions and silence. She was brave and caring while we snuggled him close.

For the youngest sister’s life, the happiest day was when her baby brother came home. She threw tantrums that the oldest could go to the NICU but she could not, but her anger was forgotten the moment she laid eyes on him. She beamed with joy and let out little screams at finally getting to reign kisses on her baby—oh yes, she announced this was her baby. She had no fear of his difference in appearance, no fear of the tube sticking out of him, for he was hers and she was his. That moment for me meant that after 2½ months apart, my family was finally together under one roof. I could let out pent up breaths; finally, my family was complete.

As wonderful as it was to not be under the pressure of NICU versus home life, a new struggle began: how to care for Eli while being an attentive mother to my other two children. Eli still needed around-the-clock care, which quickly proved difficult for me to do on my own. I would hold Eli while the girls played, or he would hang out in his swing while I helped them with something—a swirling dance of a medically dependent baby and two healthy children.

By the grace of God, food deliveries, and people volunteering to cleaning my home, we had one almost perfect month of the five of us. We took Eli for walks in his stroller, attended a pig roast, strolled our town’s downtown area on my birthday, brought him to our friends' home for a dinner. Other than his bedroom looking like a hospital room, it was as close to perfection as we ever got. To be honest, I wish I had savored that month more. Slowed my racing heart and that feeling that the other shoe would drop soon. I wish I had taken more pictures, more videos of those precious moments with him and us. My favorite picture continues to be of a moment where we caught my youngest daughter in Eli’s crib. It was morning, and she wasn’t in her bed. We could not find her, and she made no sound as we called out for her. As my husband continued to look for her, I went to check on Eli. His door was closed, and as I eased it open, I could hear her sweet voice singing to him. She had climbed into his crib, cuddled up next to him and was stroking his head while singing her version of "Jesus Loves You."

I wish there were more of those moments, the everyday kind of moments with Eli, instead of just one month.

The Beginning of the End

The beginning of the end happened one month and eleven days before he died. We didn’t know it was the beginning of the end; we just knew that, late one night, something was wrong. We needed to get back to the hospital.

Eli and I did not return home for three weeks. At least I was comfortable now in hospital life. I got so comfortable, I joined residents for their morning rounds, they joined me for late-night chats, I knew the shuttle bus schedule for Ronald McDonald House for free dinner, and walked around in sweat pants with flip flops. I was terribly lonely but could put on a brave grateful face when friends made the long trek out to see us and gave me a reprieve with a meal out of the hospital grounds. My husband got away for a few nights, so we could cuddle on a real mattress at the Ronald McDonald House and not the stiff hospital couch I was sleeping on. I spent the days making better care plans for Eli for when we finally could go home—a better hospice team and full-time nurse care.

The days and weeks flew by fast; hospital time is different than real life.

The doctor and medical team were wonderful to get Eli and I home on my 9th wedding anniversary, a perfect surprise gift after three weeks away from home. The following two weeks back home were an explosion of pure chaos. My girls desperately needed my attention, and Eli now needed 24-hour nursing care. Two shifts of nurses, hospice visits, social worker visits, insurance calls, doctor calls and that was just during my waking hours. Then, after a week home, Eli caught a cold, and his seizures returned. Hospice said he wasn’t well enough to travel back to the hospital for his three-month shunt check­-up. His neurologist said that giving him any higher doses of his seizure medications would put him in a coma. Whoa! What is happening?! How did things go downhill so fast?! How could one common cold spur on such a downhill that the words coma were used?!

This is where I would freeze frame time again. This version of me wants to hold that version of me by the face and say, "Hang on, honey. Just hang on. You think it can’t get any worse but it does, it really does so just hang on and cherish every single one of these chaotic moments. You can do this because you are going to hate the alternative. Breathe, Momma, just breathe.”


Our Beloved Son

Friends, I cannot write a whole lot about his last day on this earth. It is still so very dark and painful for me. The no-good, rotten, awful, worst day of my life began with the pounding of the nurse’s fist on my bedroom door at 2:45 a.m. For a few moments, Eli had stopped breathing. We should call hospice. Hospice arrived so quickly, it was like they flew over. Our favorite hospice nurse delivered us the news: Eli was in a state called active dying. This active dying lasted a whole day, from 3 a.m. until his last breath at 8:59 p.m. All day, I watched my baby boy slip in and out of this world over a dozen times until, with one last sigh, he left me forever. An entire day to say goodbye, to love unconditionally, to snuggle him close, to memorize every fat fold, to will every inch of him into my memory. Grandparents, friends, and his sisters were able to hold him, kiss him, and send him off to heaven.

At 8:59 p.m. on October 25, 2012, exactly five months and one day since he was born, he took one last breath and went still. With that last breath, my soul was ripped apart and a piece of my heart was stolen. My world collapsed, darkness engulfed me, and my body went numb. How do you bury a child? How do you live with a piece of your heart gone? How does one live again?

It took a long time, but I did find light in the grief trench. However, that is another story for another day. I’m still in the grief trench; how could I not be? Great love, great longing will equal great grief.

The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to.
— Elisabeth Kübler-Ross

This post was originally shared on September 29, 2016.