I bring my six month old surviving twin home from the hospital on November 12th, 2013. We practically run out of the hospital doors- we walk as fast as you can pulling an oxygen tank, a feeding pump, several paper grocery bags of medical supplies, three boxes of personal items and clothing we'd accumulated over the previous months, and a car seat with a precious 7 pound baby. My heart pounding in my chest, I can't catch my breath, we can't get out of there fast enough. I am scared that we'll get everything packed, head for the door, and get called back because of some test result or technicality. I make a secret pact with Rosie that we'll make a break for it if they tried to stop us. I am exiting the doors of Utah Valley Regional Medical Center on November 12th with my baby with or without their permission.
We take one step closer to the door and farther from the torment of waiting indefinitely. Two steps closer to the door, and a step farther from the haunting pain of sitting next to the bed space where her brother died in my arms six months ago. Three steps, four steps, five steps, ten steps closer to the door and a step closer to a future without having to watch people torture my daughter to keep her alive. At home there will be no lumbar punctures, no medically induced paralysis, no heel sticks drawing blood every hour, no food supplements that made her writhe in pain and stop breathing, no surgeries puncturing her sweet perfect skin with ugly red scars, no intubation, no extubation, no needles, no CPAP helmets, no ART lines, no PICC lines, no transfusions with their accompanying day long fasts... I can't walk out of here fast enough, but they won't let me run. Tears start to well up in my eyes.
The last step and we're there. Glass doors open with a whoosh of cold, fresh air. There's no smell of hospital antiseptic and latex here. It smells like snow and asphalt and pine.
There is an impossibly bright blue, cloudless November sky. It is cold, but brilliantly sunny. The light blinds me- I haven't been outside in sun like this long enough to appreciate it in nearly a year. My tired eyes struggle to adjust to the light that they've forgotten exists. I've never been so happy and so scared in my life. The baby squints and squirms in the sunlight. She's never been outside in the sun before.
We take some quick photos. The Doctor that resuscitated her in the delivery room is there to wish us goodbye. He performed five minutes of chest compressions on a 1 pound baby to give her a fighting chance at this life. I'm glad he's there. I'm sure some day I'll want to savor this moment, but at the time all I want to do is get in my car and floor it. I want to drive away from this place and never even peek backwards in the rear view mirror. We did it. We made it, so why am I so scared? I realize long after that it's because I feel like we've cheated death, even now I'm still secretly waiting for the Grim Reaper to come collect his payment. But today is not that day.
The parent supports group in the NICU came by every Tuesday for six months bearing gifts to lift our spirits and cheer us in our journey. One week they brought me a CD with Jenny Oaks Baker (a violinist) performing orchestral versions of Disney songs. This has been my soundtrack for the past few months, and cues up as I turn the key to race off. As we pull away from the hospital, "Baby Mine" breaks down a dam of emotion that I've been building since June to hold back my feelings and keep me sane. Stone by stone, pebble by pebble, the damn disintegrates and I'm so overtaken by feeling I can barely drive. As I pull into my neighborhood "When you Wish Upon a Star" starts playing. My house has been covered with pink balloons and a banner that says "Welcome Home Rosie" and I sit in my driveway sobbing big fat ugly crybaby tears for a long, long time.
I know that the road ahead of us will be long and difficult. My precious infant daughter, still a newborn at six months old, had a hole cut into her, a piercing through layers of skin, fat, muscle, and organ tissue that will allow us to feed her and keep her alive despite the fact that she cannot drink on her own. It's a blessing and a curse, and every bit as gross as it sounds.
She still cannot breathe on her own. For now she's breathing with the help of a nasal cannula and small, portable oxygen tank. In a few days they'll bring by a beastly machine that vibrates the entire second story of my house and sounds like a monster breathing smoke and fire.
She has a monitor to tell me when she stops breathing and when her heart rate gets dangerously low. It goes off more often than I am emotionally prepared to handle and it's as loud as death.
pshhhhhhh pssssssssssst...... pshhhhhhhhh pssssssssst.... pshhhhhh pssssssssst
Shreeeeeeeeeeeeeeiiiiiiiik!
Sobbing tears of exhaustion, relief, and joy in my driveway, I KNOW that there will be painful, frustrating, exhausting days ahead of us, but today is not that day. Today, everything is perfect.
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