jen's post

Today's post is written by one of Matilda's nurses, Jen. She was the one who came and found me in the pumping station, she gave me the biggest hug after the surgeon left, and she continues to be one of Matilda's biggest fans. Matilda is so lucky to have caregivers in her life that are willing to share her story from their perspective. I am honored that Jen was willing to write down what she was feeling while she cared for us.

I didn’t meet the Smiths until a few days after they arrived in the Pediatric Intensive Care Unit. I had been falling in love with their mischievous toddler from afar and finally went and introduced myself to them, despite not being their nurse. Parker was chatty and playful with a wry smile and shockingly blue eyes. He was a respite for us nurses so used to seeing ill children.

When I got over to Bed 7, the isolette where tiny Matilda lay, I noticed a giant bow on her head and couldn’t help but to start fawning all over her too. “What a beautiful family,” I thought to myself. As I stood there, admiring their young family, I began to chat with them—first Kelly and then Tyler.

As the days wore on and little Matilda got sicker and sicker, I became closer to the Smiths. My first stop upon arriving at work was always over at Bed 7, checking in on Tilda and Kelly and Tyler. Soon, Parker had to go back to Montana and Kelly seemed at a bit of a loss as to what to do with her days. I would spend my down time sitting with them, eating the Snickers they so kindly kept on hand for us nurses and talking about everything. Tyler teased me, Kelly encouraged me, and Tilda inspired me; they were a joy to be around. Even during the darkest days, when Matilda was intubated and time was just slipping away, Kelly and Tyler remembered to ask me how my marathon training was going or how my exams were at school. I began to see them less as parents of a patient and more like people—friends even!

Being able to view the Smiths as people, real people my age, changed who I was as a nurse. It has helped me to see each family I work with—no matter how angry, demanding, or irrational—as people that are going through the worst day of their lives. The Smiths were never any of those things, but as a PICU nurse, it’s so easy to get wrapped up in the technicalities of the job—the monitors, the vents, the alarms, your shift “to-do” list—and lose sight of the people. When you connect with a family like that, it helps you with all of your future patients, and for that I am grateful.

One night after they had been there over a month and a half, I was sitting at the nurses station and in walked one of the transplant surgeons. He asked if I knew where Kelly was and my heart was suddenly located somewhere south of my colon. I could read his face and I knew what it meant: THERE WAS A LIVER!!! Kelly, for once, was off the unit. I HAD to find her!

I knocked on the patient bathroom door, checked the kitchen, and finally did something no good pediatric nurse should ever do: I prepared to go stop a new mom while she was pumping. I walked over to the NICU (ran is probably more accurate) and heard the rhythmic whooshing coming from around the corner of the pumping room, and I knew I’d found her. As I rounded the corner, she sat there serenely. Trying to look only at the ceiling, I told her “Um... the transplant surgeon wants to talk to you.” Her eyes briefly met mine and she just said “OK.”

I kept my distance while they spoke. Accepting a transplant, even with a child as sick as Matilda, is inherently risky. What if something goes wrong? What if the organ is no good? What if a better match comes up after? These questions, and many more, are what the parents will be sitting with for the duration of the 8+ hour surgery. A lifetime, if it ends badly.

In the end, Kelly and Tyler chose to accept the transplant; they knew their baby was running short on time and relied on their faith to guide them. At this point Kelly and Tyler had a moment of tears and seemed to reach into each other for strength. But just as quickly, they seemed resolute and confident. Looking at Kelly, I saw that same serene look she had had in the pumping room. She was at peace with what was happening. More at peace than any of the nurses, that’s for sure; the next 24 hours were nerve-wracking for those of us not scheduled to work. I was unable to sleep that night, and I laid awake, praying harder than my agnostic self would like to admit.

Things moved quickly after that. She was extubated, weaned off of all her drips, and sooner than we’d all have liked, transferred out of the ICU. I still tried to visit the Smiths on the floor when I could, but it’s hard when you have sick patients back in your own unit. Then the best thing happened—they went home!

I’ve stayed in touch with Kelly and marveled at how fast Matilda has grown, at all the milestones she’s meeting—and I know that Kelly and Tyler are not taking a second of it for granted. For Tilda’s part, she is playing the joyful toddler with ease. Each new picture Kelly posts reminds me what a wonderful job I have and how lucky I am to come into contact with people like the Smiths. They make what nurses do worthwhile.

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