Riley’s Precious Gift to Us: Going Home




maddie burke blog image
Maddie and Rachel Burke, Bloomington, Ind.

Nurse Brenda walked into Maddie’s room, and bustled about, getting ready for another day. I slowly pulled myself out of the recliner where I had been sleeping next to Maddie’s warming table, and started performing Maddie’s care. I changed her diaper, took her temperature, carefully wiped her face around the tape holding her ventotherm and feeding tube, cleaned and replaced her monitors, and rewrapped her in a tight, warm swaddle. I reported Maddie’s temperature (still no fever. A good sign that she was staving off infection), and read her weight off the screen over her warming table (she lost a little bit, but seems to be stabilizing finally). Brenda wrote the numbers on a dry erase board in Maddie’s room, then turned to me, a marker still in her hand.

“So, what’s our goal for today?”

It was always the same goal. I never said anything else. I looked down at Maddie, squinting at me over the tube that was breathing for her.

“To go home.”

Sitting in the NICU at Riley Hospital for Children, I never so clearly understood home better. Because home was where we weren’t. Home wasn’t here. Home was an hour drive south, with my oldest daughter, and the green wall we had just painted in Maddie’s nursery. Home was my own shower, and letting my toddler watch too many cartoons while I doze with a milk-drunk newborn. Home was not here. Home was not a warming table next to a foldout couch. Home was not pulmonologists, bilirubin levels, or long, long hallways that were too quiet, too clean, and too bright. Home was not a preemie with bad lungs.

At least, that’s what I thought.

But you really can’t marvel at the light unless you first wander in the dark. You can’t truly enjoy water until you’ve experienced thirst. You can only understand the concept of day because you have lived through the impenetrable night.

Riley sent us home. And, in a way, Riley’s NICU gave us home. Watching the doctors coax Maddie’s lungs to open, to inflate, to breathe, I knew that her tiny, warm, too-thin body was my home. That no place could ever feel like home without her. That her dark, hazel eyes held my universe. I never knew how desperately I needed somebody until I almost lost her. I never appreciated home until mine almost crumbled.

Riley saved her. Riley sent her home. With me. 

Home became Riley’s gift. 

And this is why I give.

Our family has proudly donated to Riley in Maddie’s honor. Our hearts belong to Riley, forever.

Maddie’s time at the NICU was brief, but during those six days, my husband and I saw the kinds of challenges the staff there face every day. Riley’s incredible level of personalized attention and care means that each child not only gets a dedicated nursing staff watching over them—each child also has another cheerleader. Another friend. Another member of the family who is hoping, wishing, working, grieving, worrying, and fervently praying right alongside you.

That entire, long week we were at the NICU, I never broke down. Somehow, in the primal, animal mood of a desperate, frightened mother, the tears never came. Then, the day after we were discharged, I took Maddie in for a follow up appointment with her pediatrician. “Go home and enjoy her,” the doctor told us. “She’s just a normal newborn now.”

Normal.

Normal.

I put my face down in Maddie’s thick hair. I finally couldn’t stop it. I wept. I sobbed. I cried until her head was wet with my tears. Normal. Normal, normal, normal. No more doctors. No more tubes. Normal.

“Thank you,” I whispered into Maddie’s hair. “Thank you, thank you, thank you.”

We were home.

Because of Riley.

 


Rachel Baumgardner-Burke

Rachel Baumgardner-Burke and her husband Bobbie live in Bloomington, Ind., with their children, Sophia and Madeline.


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