Gus in the NICU

Today, my plan was to give you a new spin on an old story. I’ve re-written our NICU experience in 800 words or less for a parenting memoir submission, and although many of you already know Gus’s story, I bet you haven’t heard it in 800 words or less. I bet you haven’t heard me say much of anything in 800 words or less except, perhaps, every single thing I know about Calculus. I tend to be a bit verbose, you know.

But first, I have to say how absolutely elated, humbled, and genuinely giddy I was to be “Freshly Pressed” yesterday. Thanks, WordPress. Thank you with all my heart. Truth be told, I didn’t know what “Freshly Pressed” meant before yesterday. (I’m a bit technologically challenged. Thank heavens my dear friend, Kirsten, isn’t. Otherwise, I might not even know what WordPress is.) In fact, being “Freshly Pressed” still sounds a little dirty… or a little bit like something that should happen in the kitchen. One of those scenarios I’m familiar with — the other, not so much. You get to guess which is which.

I was sitting at lunch with my friend, Kay, yesterday when my iPhone began vibrating wildly. My inbox flooded with WordPress messages, the inhalation of my broccoli bites increased with my adrenalin. There were so many “likes.” Just so darn many. I feel a bit like Sally Fields today.

People are often perplexed by why I choose to bare my soul on the Internet. You know why? Because of you. Because of the comments I received in response to my last blog post. Because one of you so kindly said, “You speak for many.” Another kind kindred said she feared risking herself in such an open forum. I say, fear not, dear friend. The hearts you touch with kindness and beauty will slay whatever ugliness you might encounter. And the ugliness? It needs a big fat hug, too.

I am so grateful for all of you, for your comments, for your shared loved of Pop-Tarts, Ho-Hos, and baloney and cheese on Wonder bread. Thank you for stopping by. I hope you’ll stay awhile. Bring some Apothic Red if you’d like. I’ve got plenty of glasses. (One less, today, however. My dear hubby accidentally broke a beloved Christmas gift while doing the dishes last night. I won’t say which wine glass, JG. Not saying at all. But I cried… again. Perhaps it’s time to switch to a sippy cup. More durable, less spilling.)

Now — as originally scheduled — here’s Gus’s story in all its 800-word version glory. He’s certainly a miracle, that sweet and spindly little dude of mine.


“Gus’s Acronyms”

With a mop of red curls leading the way, Augustus Charles Willis made his way into the world on a bitterly cold February morning. He arrived via c-section and was awarded an APGAR score of nine. (Nine!) I imagined the judges holding up their numbered signs.

And then his oxygen saturation levels began to drop. Less than 24 hours after his championship performance, he was being rushed by ambulance to St. Vincent’s Neonatal Intensive Care Unit.

“Where my baby?” asked his two-year-old brother, Sam. “Where my baby Gus?” Chris and I did not have a good answer. Our baby Gus was in a strange and foreign land, one that we would reluctantly adopt as our new home.

“He’s with the good doctors,” I explained to Sam as I held him closely, felt the butterfly beating of his small, strong heart. “They’re making him better.”

Moving through the NICU was like swimming in snow boots. Travel was slow and breathing did not come easily. The dark, hushed silence of a room full of critically ill babies teetering precariously between life and death was surreal at best, tragic and terrifying at worst.

And then there was Gus. Our plump, seven-pound elf, on his back, eyes closed, still and silent, enveloped by tubes, and sleeping with pharmaceutical support to the sounds of beeping machines. His blood-stained chest vibrated with frightening speeds as the oscillating ventilator delivered tiny puffs of air to his weak, damaged lungs. If you looked beyond the bandages and the wires – and I could not look beyond the bandages and wires – he was perfect. His fingers and toes were long and lean, his legs chubby.

“What went wrong?” I asked Chris.

“What went wrong?” we asked the neonatologists.

And even they couldn’t give us a solid answer. We’d often see them standing at his bedside, hands on hips, shaking their heads. He was a mystery, our boy. A medical conundrum.

During the next five weeks, our lives turned upside down. We maintained a bedside vigil with Gus until the angel nurses forced us to sleep. Often, our cell phones would ring in the middle of the night and we were called back with the news that Gus might not survive until morning. It was one endless, grueling week before Gus’s illness was given a name: pseudomonas pneumonia. The next four weeks became the most valiant fight of Gus’s life as his medications were changed, his ventilator settings adjusted, his chest x-rays examined again and again. Surgery? ECMO? We never knew what would come next.

But tears? They came easily and often for us, and we named them Fear, Anger, Disbelief, Confusion, Pain, Fatigue, Helplessness, and sometimes, very briefly, Happiness. When Dr. Templeton told us that Gus had made a slight improvement, we rejoiced. It was often one step forward and two steps back, but we continued the climb. We tightened up our hiking boots and double-checked our carabiners.

The day Gus broke through his medically-induced coma, the day he finally opened his soulful blue eyes, the day he cried his heartbreakingly silent cry (because the intubation tube ran directly through his vocal cords), was the day we reached the summit.

“We see my baby Gus?” Sam asked as we drove him to the hospital to meet his brother.

“Yes, Sam,” we cried happily, “we get to see baby Gus.”

When I see twelve-year-old Gus running today, with his awkward, gangly gait and his arms flailing wildly; when I read his insightful journal entries; when he smiles his quirky, crooked half-smile; when he lugs his baritone around like a grossly distorted appendage; I cannot imagine a world in which God would have chosen to keep this particular blessing from the rest of us.  He’s going to be a teenager this year (Thirteen!). As a baby, he bravely battled multiple bouts of pneumonia; worked his way through physical, occupational, and speech therapy; and sat patiently through countless breathing treatments. When he was nine (Nine!), he proudly began showing his scars to his friends. “This is where they put the tubes to fix my lungs,” he explained, lifting his shirt for all to see. “This is where they sewed another tube into my chest to give me food and medicine.”

Gus was our teacher of All Things NICU: we learned about PIP and PEEP ventilator settings, transient tachypnea of the newborn (TTN), infant respiratory distress syndrome (IRDS), pulmonary interstitial emphysema (PIE), bronchopulmonary dysplasia (BPD), central lines, steroid therapy, versed and vecuronium, and the relentless beast known in medical circles as pseudomonas. But most importantly, Gus’s brush with death taught us, quite simply, how to live. If there is a lesson to be learned from our experience, it is that life is fragile and fleeting and precious; and never, ever guaranteed.

Thanks, Professor Gus.

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15 Responses

  1. Whether I’ve read the 800 word version or read or heard a longer one, it always brings happy tears to my eyes….Happy early 13th birthday to Gus!

  2. This is so lovely and full of emotion. Although my children were not “sick” they were in the NICU as well and although it was the worst time of my life, it was also the biggest learning experience – like you said – it taught us to live and appreciate every second. They are my miracle babies and I love getting a reminder of that.

  3. My heart goes out to you… I don’t have the joy of being a parent…yet…if ever, but I do know the frustration that goes along with being a medical conundrum and I see the strain that it brings, especially on my mothers face. Did they ever figure out the puzzle? We…or at least I, grow up with a kind of naivite towards doctors. We think they know all and can do all… but life and genetics can quickly change that perception. So quickly, we sometimes have difficulty in accepting it as reality and not just as a dream.

    I Love freshly pressed (to me it sounds like something from the dry-cleaners 😛 )…and I have only been on WP for two days…and without it, I would never have found your blog 😉 ). I am no stranger to the information age, but mayhap your WP savvy friend can tell me how to surf around for random blogs? (No, not random posts on A blog, that one I figured out quite quickly 😉

    A very happy 13th, in advance, to your very special boy 😀

  4. Having been the person on the other end of the stethoscope, I have been lucky to have never forgotten that the children in the beds/incubators are not numbers or cases, but human beings. Thanks to you sharing your story, I have another reason to never forget.

  5. God bless you for being so brave and bold to share this with the world.This has provided me with more hope and comfort as my son Cameron (28 days old and counting) is in the NICU now! I know those tubes all too well! Gus is truly one of God’s miracles!! Please keep us in prayer for healing! Peace and Blessings

    1. Mama Ebony, my thoughts and prayers are with you and your sweet baby Cameron. Those NICU nurses and doctors are miracle workers and angels in scrubs. Remember to take care of YOU, too, as they take care of Cameron. Hugs to you both! XO

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