While we may joke that babies don't come with instruction manuals, there are still many highly acclaimed schools of thought on child rearing and many so called experts who have published theories on how to properly rear that new bundle of joy. While my mother clearly subscribed to Dr. Spock in her quest for support and validation on her parenting journey, I have yet to find anything that could help us on our journey as we care for Kenna. And the reason for this is that there aren't a lot of babies her size born, fewer who survive, and even less is written about their care. That's why I wrote Keeping Up With Kenna and published it the day she came home at a whopping 6lbs after a 183 day NICU stay. That was the easy part of our journey. That was the part with the safety net. Since then, we've been flying solo by the seat of our pants.
Really... there is no book to consult when you wake up in the morning and discover your baby is laying in a pool of formula created from the feeding tube falling out some time in the night to expose a gaping hole in the abdomen. There is no book to help you trouble shoot when the concentrator providing your oxygen-dependent infant with air breaks down in the middle of the night, and the regulator on the travel tanks starts leaking, and the oxygen-dependent infant is struggling for air. The reality is that even after our equipment training and the practice for emergency situations, nothing prepared us for some of the challenges we've faced in the nearly eight months since Kenna has come home ...nothing but being home, in the trenches, caring for Kenna.
We face her care with completely different perspectives. We face other parents, our own parents even, with completely different experiences. It became our job to educate those around us. Kenna came with an entirely different set of needs. She has never been a baby that we could simply hire a babysitter for. No, with all of her medical equipment, she's a baby that we hire a nurse for. And this is why we've been on one date in the last eight months. One of our former nurses gave us an evening out, quite possibly one of our best gifts ever. Kenna's compromised immune system and immature lungs account for why we have been in isolation since October. Isolation is just as it sounds: me and Kenna at home, away from strange germs, leaving only to visit a doctor or go to the hospital. We have done both with alarming frequency.
As different as our parenting journey has been from other parents, we wouldn't trade it for a moment. We have learned to think outside the box, to problem solve, to assess and handle a crisis, and most importantly to enjoy all the little moments because they are, to us, so big. So while some parents would grow frustrated that their baby is constantly removing a sock or both, we marvel at our clever girl who can rip off a sock the moment our backs are turned and who smiles that devilish smile when we discover her trick. While some parents dread that stage where everything goes in the mouth, we revel in it and encourage it because it is such a sign of growth and development from a baby with an oral aversion. And it's why we worry less about the way the books say a given task is supposed to be achieved and instead find a way for it to be achieved.
See, sometimes being a parent means throwing what we're supposed to do out the window. Sometimes when you are desperate to get your baby to drink by mouth instead of having food pumped directly into her belly at scheduled intervals, you'll accept that said baby refuses a bottle. You'll troubleshoot when every sippy cup on the market is super-sized for your smaller than normal baby. And that's why when the speech therapist working on feeding asked for a small plastic cup for Kenna to drink out of, I only hesitated a split second before grabbing the blue plastic shot glass out of the cupboard. Sure, it went against everything I believed in. My 13 month old should not be drinking out of a shot glass, but I wanted her drinking. And so I looked past the intended use for the practical use, and that shot glass was practically perfectly Kenna-sized.
"Here, try this magical drinking glass," I said as I passed the little blue shot glass full of whole milk to the therapist.
"Wow. I love it. What's so magical about it?" She held it to Kenna's lips...and Kenna actually drank!
"Well, by day it's perfect for Kenna to practice drinking out of. And at night, if this doesn't work, Mommy can have a shot," I smirked.
We have learned to let go of the way life is supposed to be, doing things the way the books say they should be done, and instead working with what we have, living in the moment, and accepting our limitations with grace and humor. Kenna is my third baby. She was supposed to be perfect, a product of our love come to life, blessed with an experienced mother and an enthusiastic father. And though historically speaking, a baby on monitors with oxygen, a feeding tube and pump, a nebulizer, therapists, and a host of medications would be considered far from perfect, to us, the ones writing the book, she absolutely is.
How have you, as a parent, thumbed your nose at convention and blazed your own trail?
When Nicki isn't writing the book on parenting a micro-preemie, she can be found blogging about life, love, parenting and relationships on Suddenly *Not So* Single Journey. Her novels are available through Amazon and other fine book sellers.