During Hope’s hospital stay, the days and nights all blended together. The sun kept our internal clocks on track, but our days didn’t start until the medical team made its rounds, and our days didn’t end until one of us passed out in the window-seat-turned-makeshift-bed beside Hope.
Now back in the inpatient unit (“6 Tower”), we felt an urgency to return home. Whereas the staff was eager to bring a patient out of the woods and well enough for ICU discharge, it seemed that same eagerness didn’t flow through 6 Tower. If we made one wrong move, such as Hope’s blood work showing signs of infection or a dip in her oxygen saturation, we’d fall into a trap of quicksand that would require all hands on deck to escape. On the morning of March 17, 2016, we didn’t know whether or not we were going to be discharged, but the nurses all alluded to the possibility, so we took each step very carefully.
One stipulation for discharge was for Hope to take a 4-ounce bottle at a single sitting, or else she would go home with a feeding tube. My first reaction to this news was frustration, because she’d never eaten 4 ounces at one time, and now just a day after getting back on bottles we were supposed to make this happen. I didn’t think it was possible. But my husband believed in us and nothing short of told me so before he left for work that morning.
When he left, it felt like Hope and I were embarking on summit day—the single, most anticipated day of a multi-day climb when everything you’ve worked toward, everything that’s beaten you down and built you up, culminates in one final push—and so we reached into our reserves and scraped out the very last bit of energy we had to prove that Hope was well enough to finally come home.
Besides drinking a 4-ounce bottle, Hope had to pass the following exams: echocardiogram, electrocardiogram, and X-ray. Because Hope was still an inpatient, I had to hold her while being pushed in a wheelchair as we moved from one exam area to the next, and because I was alone with her, I had to wait for someone from “transport” to move us around. This felt easy enough, so after Hope shockingly sucked down a 4-ounce bottle like she’d been doing it all her life, we set out on our journey. We left our room with a pacifier, burp cloth, and my cell phone so that I could stay in touch with my husband. Having been to these appointments before, I was sure we’d be back to the room before Hope needed to eat again. Boy, was I wrong.
None of the appointments took longer than I would have expected, and all appointments were set up back to back so that we never waited for very long in the waiting rooms. But transport was where we lost all of our time. After each appointment concluded, the respective reception would call for transport and Hope and I would sit and wait. The wait was always promised to be 10-20 minutes but went upwards of 45 minutes each time. This was particularly painful knowing that the next appointment was quite literally a stone’s throw down the hall and that I was not permitted to walk Hope down the hallway myself.
After our last appointment ended, nearly 4 hours had passed since Hope ate and she was due. She was crying and miserable and I was kicking myself for not bringing a bottle for her. The woman at reception asked if I wanted to draw a curtain for privacy and nurse Hope. “She doesn’t really…” I began, but then I figured what the heck, I needed her to calm down. And so this kind woman wheeled me to a corner of the waiting area and pulled the curtain. I looked down at my screaming baby and popped her pacifier in her mouth until she started sucking. Then I switched it out for me and by some miracle she latched and she ate. Just shy of 3 months old, my baby girl nursed successfully for the first time. She didn’t need another minute in this hospital. She told us in many, many ways that she was going to be just fine.
When we finally returned to our room, the nurse told us that the doctors had reviewed Hope’s diagnostic tests and all looked good, so all we had left was discharge paperwork and we’d be home free. I called my husband to leave work and return to the hospital. After receiving discharge instructions, which included incision care and a follow-up appointment with Hope’s cardiologist, we were in the car by 5pm. People were meandering around the streets of Washington Heights dressed in green with conspicuous plastic cups in their hands, celebrating their Irish heritage (or lack thereof). What a wake up call—while we were on the scariest journey of our lives, the world had kept turning and we had no choice but to brace ourselves and jump back into the mix.
Being discharged from the hospital may seem from the outside simply as a return to normalcy. No more sleeping head to toe with your spouse on a narrow couch. No more requiring help to change your baby’s poopy diaper to avoid contaminating the central line in her groin. No more waiting in line to inevitably inconvenience your neighbors by using the shower that’s located in the only convenient bathroom in the PCICU. No more worrying about disturbing another parent sleeping in the lounge when you need to run the microwave.
But this was more than that. We survived Hope’s operation together as a family. Not everyone gets to leave the cardiac unit with the child they brought in with them, and we are fully aware of the gift we were given. From our perinatologist, to the cardiologist she introduced us to, to the surgeon he connected us with, our lives are forever changed and we are eternally grateful on this second anniversary to continue to see Hope grow and thrive and be able to enjoy life like every little girl has the basic right to do.
[Click here to read Part I: Discovery to Operation]
What a wonderful,beautiful,touching story.I could almost associate with you but,not really.I am happy all turned out for all of you.I am also beyond thrilled that that little angel latched on at a time in need.For you both.God Bless,a ❤ warmed by You.
LikeLiked by 1 person
Pingback: Hope’s New ID Bracelet | At Her Own Pace·
Pingback: A New World Down Syndrome Day Challenge | At Her Own Pace·