This isn’t quite how I imagined my first Mother’s Day to be. There will be no family brunch after a morning spent at a spa. I won’t get breakfast brought to me in bed because my bed is a pull-out couch next a crib in a shared hospital room at Seattle Children’s Hospital. It’s been my home for the last three months since we were transferred from the Neonatal Intensive Care Unit (NICU) at another hospital where my son, Theo, spent his first 105 days.
Theo was born at 27 weeks after chest pain sent me to the ER in the middle night and I was diagnosed with HELLP (Hemolysis Elevated Liver enzymes Low Platelet count), a complication of severe pre-eclampsia. Theo spent the first six weeks of his life fighting to breathe and live, and the last five months waiting for his lungs to repair all the damage the ventilators, a superbug, pneumonia, heart surgery, and being born premature did to them.
All of my son’s firsts so far have happened in the hospital: his first bath, his first diaper blowout, his first smile.
All of my firsts as a mom have happened here too: The first time I held him. The first time I heard him cry after six weeks on a ventilator. The first time he tried a bottle.
I feel like a part-time mom. For three weeks last winter he was hooked up to a high-frequency ventilator to keep his lungs open while snowed under with morphine and I couldn’t hold him. He wasn’t even getting milk, just a glorified sugar-water mixture. The extent of my mothering was changing a diaper in the incubator and standing over his medically paralyzed body as I sang softly to the plastic box. The NICU nurses and doctors interacted with him more than I did. They were saving his life. I was just sitting there praying and writing him letters in a journal. Once Theo was healthy enough to hold, I was limited to the time he could spend in my arms- usually only two or three hours once a day.
Somehow Theo beat the odds and made it out of the incubator, out of the NICU and onto the medical floor at SCH. As of last week he no longer needs additional oxygen support. He is thriving on a cocktail of steroids for his lungs, milk and formula, and vitamins, all fed to him these last six months via feeding tube. He now weighs twelve pounds more than he did at birth, and is so robust strangers don’t believe me when I tell them he was premature. His corrected age might be three months, but he’s already sitting up in a high chair and doing his version of The Worm. My right arm has a permanent bruise where he likes to nestle his heavy head when I rock him to sleep.
Now he acts like a normal baby: spitting up on my clothes minutes before I have to leave for work, peeing on the floor/ scale/me whenever he has the chance, and attempting to roll over. Even as he gets healthier, my parenting skills often get benched, partially because the care at SCH is so good. Nurses administer his medication. A nutritionist dictates what and how much he eats. I often wake up in the night to find a nursing assistant or student changing his diaper, quietly like a nursing ninja. We can’t take a walk down the hall or give him a bath without getting approval and putting monitors on standby. Some days it feels like the only decision I get to make for him is what he wears.
For a kid who is constantly poked for blood draws and was tethered to a feeding tube and oxygen for six months, Theo is surprisingly mellow. He laughs when I sing 90’s Hip Hop. He loves to listen to Mariner’s games and stare at the toy fox that hangs from his mobile. He’s met Miss Washington and a few athletes, including Russell Wilson. He participates in rounds every chance he gets, carefully studying the faces of the doctors and residents tasked with helping him get better. When no one is looking, he likes to pull out his feeding tube and wave it like a lasso. Every time he smiles my heart explodes with love for him.
This Mother’s Day might not be what I had in mind when I became a mother. I’m okay with drinking bitter coffee and eating a Starbucks breakfast sandwich by my son’s bed because I know we won’t be living in the hospital forever. In fact, as an early Mother’s Day gift, our doctor gave us the green light to be discharged. My son, who wasn’t expected to live in December, with his perfect bow mouth and tiny, fat fingers, gets to finally come home on Monday. I don’t mind celebrating a day or two late because I’ll finally get to be a full-time parent.
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