FIVE

First Ride Home: May 3, 2012

Five years ago today, we brought Olive home. I think most first time parents probably feel a mix of nervousness, anxiety and excitement in varying proportions when they bring their first baby home, but I was terrified. Olive's due date came and went in April, and we had no indication that we would be leaving the safety of the hospital until a few days before it happened. We knew she'd be coming home on oxygen and that she certainly wasn't eating well, but she also had anemia, hearing loss, eye disease, lung disease, and a fragile immune system to the point that a common cold could send her back to the hospital or worse. But we were told babies sometimes surprise everyone and thrive once they're home. No pressure, right?

After 94 seemingly endless days in the hospital, the last few were a flurry of activity. My mom supervised everything at our house while we were basically living at the hospital and/or Ronald McDonald House, and she had already arranged for our house and carpet to be deep cleaned, our windows to be washed, a freezer to be delivered and our nursery furniture to be delivered and set up. At the hospital, Dain and I were busy learning how to care for our daughter. The nurses taught us how to fortify breastmilk and administer iron supplements. A car seat educator taught us how to properly position our itty bitty baby in her car seat using rolled up blankets for extra support and then gave Olive a "car seat test" to make sure that she could maintain a healthy oxygen saturation level for at least an hour in that position. Someone else gave us a first aid class and tested our competency in administering infant CPR. She told us to tape the CPR step-by-step visual guide to the wall in our nursery and kitchen if not in every room in our house. Every doctor and nurse towards the end seemed to give us advice. It was so much information and what still sticks out the most in my mind is the research coordinator who told me that we'd be stupid to ever take Olive anywhere like the grocery store or Target because GERMS. They're absolutely everywhere in case you didn't know that.

Hospital car seat test.

We hired a medical supply company and had a truck load of supplies delivered to the hospital and our house. We learned how to use the apnea monitor and the oxygen tanks and cannulas and lines. We had a landline phone set up at our house to ensure the fastest 911 response possible and to use to download the data from the apnea monitor to send it back to Children's Hospital. I spent hours on the phone. I signed up for a life support designation through our electric company so that we would have priority for power restoration in the event of an outage as Olive's equipment would require power. I called the fire department to inform them of the oxygen tanks in our home and ask about whether or not they carry infant oxygen masks (they do.) I called our police department to ask about emergency response times to our house (under 3 minutes.) I applied for a temporary handicapped parking placard. I found a pediatrician and scheduled appointments with him, the pulmonologist, the home health care nurse, the audiologist, and the eye doctor. We placed signs on our doors stating oxygen was in use and rid our house of anything flammable. We even did a few normal things like buy diapers and wipes. I read the PREEMIES book cover to cover despite a very specific warning in the beginning that you should most definitely not read it all, only the sections that apply to you. But how would you know if it applies to you if you don't read it?

It all felt like we were studying for a colossal test. I've taken a few high-pressure exams in my life, but never before had someone's life hinged on my mastery of a subject. Let alone my own child's. If I had stopped to think about the mountain of what-ifs, I would have never been able to keep going. Instead we put our heads down and did what we had to do. And then, on the morning of May 3, 2012, the rounding neonatologist casually wrote Olive's discharge order and wished us luck. We signed some forms and were told we could leave whenever we wanted to. Obviously we stalled as long as we could. But after we gave her a bottle, let her nap, had lunch, gave her another bottle, pumped a few times, asked our nurse fifty more questions, filled up bag after bag of supplies and packed up our existence from the past three months, we finally strapped her into her car seat, said our goodbyes and walked out the door with OUR baby.

HOME (May 3, 2012)

We had walked out those doors so many times without her that it felt like we were stealing her as we walked across the skyway and into the parking ramp, discussing whether we did it right as we clicked her into our car for the first time. Naturally I sat next to her in the backseat as Dain drove slowly and cautiously on the road home, our family of three alone for the first time. For the next fifteen months Olive would not have a single car ride without screaming the entire time, but on that first ride home, she fell sound asleep and didn't even stir when we carried her inside. We set her in the living room and changed her oxygen from the travel tank to the large tank in our living room for the first time, both of us double checking that we did it right. She slept in her car seat as we tiptoed around her, unpacking our bags and organizing all of the many supplies we suddenly needed.

We were as ready as we were ever going to be, and right as I sat down and took a deep breathe, she woke up screaming and it began. The next two years were tough, with Dain and I being in survival mode for most of it. Looking back, it's a blur of doctor visits, surgeries, feeding difficulties, therapists, vomit, sleepless nights, and worry. But our family persisted, even when we weren't thriving. And now I sit here asking myself how it's been five years already since that day we snuck out of the hospital with our baby.

We have a happy and thriving five-year-old who is starting kindergarten in August. How is that even possible? This kid astounds me. She is curious and strong and adventurous. She is cuddly and affectionate and sweet. Her energy knows no bounds, and she can be relentless when she fixates on something. She loves school and playing with her sister, and her ideal Friday night includes pizza and a viewing of Moana with her prominent spot snuggling in between her parents. She didn't speak until she was two and a half, and now she will talk your ear off from the moment she wakes up until the fifth time she comes out of her room after you say goodnight. She is still tiny, weighing in right around 30 pounds, but she is healthy, having weathered each and every illness that preschool has brought. And my goodness, she is loved.

Today will be like any other Wednesday for Olive. She'll enthusiastically bound out of her bed excited to start her day. Her sister and I will walk her to school where she'll tightly hold my hand as we walk to her classroom to hang up her backpack before heading upstairs where she'll ask us to watch her "crazy tricks" on the climber before giving me a hug, a kiss, a high five and a bump. She'll chirp "I love you, mom! Bye mom! Bye June!" as we walk away and may even throw an "air five" and an "air bump" motioning to us from afar. The wonderful thing about being five is that every day has strong potential to be the best day ever. Today will be no different.

For me, I will hug Olive extra tight today and remind myself to be grateful for our beautiful girls and this unexpected journey. We'll make a donation to the neonatal program at Children's Hospital, and we'll have Olive shop for toys for children in the hospital so that we can pay forward some of the kindness that was bestowed on us. Other than the occasional comment about her tummy scar, Olive has no concept that her start in life was difficult and different. It does not define her. I wish I could say the same, but I don't think I'll ever be completely over it. It's been such a huge part of our lives these past five years, and it's emotional. And we're the lucky ones. We brought our baby home. Not everyone gets that privilege.