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Reflections on this year’s NICU reunion

Posted Oct 10 2012 11:46am

Our hospital’s biennial NICU reunion was this past Sunday. While other hospitals host huge, all-inclusive festivals, ours invites only the families who had babies in the NICU for at least two weeks, within the last two years. Technically, we didn’t belong, since D was discharged at the end of July 2009. Z was performing for the kids – a volunteer gig he’s committed to in perpetuity – so we went along.

It was cold and rainy, not your average early October day. I had to battle with Daphne about her outfit. She settled on a red dress with white tights and black shoes. It was adorable and you’ll have to take my word for it because I didn’t take pictures. We were too busy chatting.

In spite of the nasty weather, there were many, many adorable toddlers running around and littler babies in strollers, spanning the range of ability. I’ve been at this game long enough to know which ones will keep navigating preemie world for years, and which ones will, as they say, catch up. There were many, many twins. This year, it hardly affected me. For one thing, you expect to see multiples at a NICU reunion. I also think of all the parents who didn’t get to bring their child to the NICU reunion, and instead got the invitation to the hospital’s memorial service the following week. We get to do both.

Throughout the afternoon, I had one foot at each side of the “we’re so lucky/why us” line. Daphne is doing well, we’re so grateful. She enjoyed the party like only a 3-year-old can. She made a pumpkin-shaped foam picture frame, and handled all the tiny stickers by herself. She ate tuna fish with mayo and fudge brownies. She danced and made song requests. She talked about Halloween (she will be Minnie Mouse) and told friends that we just watched “The Withers of Oz” (Lucy will be Dorothy).

She was probably the only child who had special guests at the party. Her nephrologist came by to say hello, which made her really tense. Her beloved med students came too, which was incredibly nice and generous. Lucy was thrilled to meet them. They are larger than life in her mind, for some reason.

We are sort of past prematurity, and we are not. I mentioned to Nephro that we  being less careful with germ exposure, but we have to be realistic. Her lungs are strong and fine. Her kidneys are not. He said “well, the more bugs she catches now, the more immunity she will have after transplant.” Nice way to look at it?

Daphne is a former preemie, but still very much a patient. She is a totally average 3-year-old who goes to school, and just last night got a birthday party invitation from a classmate. She’s also a little girl who gets blood drawn every month, and who gets a shot every night to help her grow.

It is a privilege to get a taste of both worlds, but it’s sort of exhausting too. It’s our reality.

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