For those of you who might not be familiar with the above clip, this is Professor Alastor Moody from the Harry Potter books. Well, technically, its Barty Crouch Jr, but that’s another story entirely. Moody is an Auror, a Dark Wizard catcher in the Wizarding World. His job is to find and capture wizards loyal to the evil Lord Voldemort. His secret for accomplishing this (and staying alive in the meantime) is CONSTANT VIGILANCE! Life with a hydro preemie requires CONSTANT VIGILANCE as well.
Little Miss Minion has several things keeping her hydrocephalus at bay right now. She has two shunts that mechanically drain excess cerebrospinal fluid (brain Gatorade) to prevent her pressure from building. She has a manually created passage between her ventricles to let the fluid flow and drain between them, and she has an ETV (endoscopic third ventriculostomy) that functions as a drain. Ideally, the ETV would allow all the excess fluid to drain out and the shunts would act as backup methods…but what is ideal and what is reality are two different things. At any given time, her ETV could close or become blocked. Her shunts could malfunction, break, or become blocked. CONSTANT VIGILANCE!
Saturday night, we noticed a little bump near her ETV site. It had been there since she had the surgery, but it was puffed up a little now. She was acting normally, eating normally, showing none of the usual signs of increased cranial pressure. However, the possibility is always there. CONSTANT VIGILANCE! We put in a call to the pediatrician after hours line, just in case. They contacted the hydrocephalus clinic on-call ER doctor, who ended up telling us that this is part of the healing process and if she’s acting normally, there is nothing to worry about right now. CONSTANT VIGILANCE!
Between the initial call to the pediatrician after hours line and the neurosurgeon calling us back, we were already planning for another hospital admission, just in case. Would we take her in that night and risk another 12 hours of cold/flu/RSV exposure? Who would need to take off how many hours from work, debating between ourselves if this was a shunt issue or her ETV, whether her fontanel felt puffy, her last ten feedings and how they had gone, whether she had been fussier than usual over the past few days, did we still have multiple copies of her isolation letter or did we need more, how many bottles of breastmilk were already made up and would any get thrown away due to age…CONSTANT VIGILANCE!
I was watching Frasier this afternoon and it was the episode where Niles has to have heart surgery and Daphne flips out in the waiting room.
Roz: Daphne, it’s okay. Just calm down. You know when this is all over we’re…
Daphne: There IS no “when this is over”! There’s no tomorrow, no next week, no next year! There’s nothing until he comes out of there and I know he’s okay!
Sometimes Most of the time, this is how we feel. There is nothing else in the world until we know that she is OK. But we don’t ever really KNOW. We will always be worried about the status of her shunts.We will always wonder if they are working correctly, if her fussiness is due to being tired, teething, or a shunt malfunction. If that headache when she’s older is because of staying up late to study, drinking too much pop, or her shunt malfunctioning.
The thing we don’t have to worry about is taking anything for granted. Her firsts are always miracles. Her first smile in the NICU is engraved on the back of my eyelids. Her face, the first time I saw her without a feeding tube and nasal cannula. Her hair, now that its growing in and not being shaved for surgeries every other week. Her eyelashes. Her hand, and how huge it is compared to one of the first times I held her and she wrapped her entire arm around my THUMB. Every ounce of weight gain is celebrated. Every smile is remembered. Every laugh, every cry, these things prove that her lungs are in good shape and that she’s breathing.
Right now, she looks like any other 4 month old. But she is so much more.