I’ve previously characterized the NICU as a veritable wonderland, where down is up and wrong is right.
Apropos of that, after recapping Baby Jax’s progress over the last few weeks and outlining a couple procedures for the next few, one of his doctors said, “Medicine is an art, not a science.”
I should back up and reframe this exchange, because the doctor was in no way being vague or pithy. Like all of Jax’s fantastic team of medical professionals, this doctor is not only highly skilled and reputable, but also incredibly compassionate, patient and understanding.
This is an important point to make because said team, in addition to taking care of our adorable preemie, is also charged with the formidable task of answering tedious questions from worried moms and dads.
We are stressed NICU parents, and we wear our stress like a tattoo we never signed on to receive: it is unexpected and permanent. Dashing in and out of the hospital to see Jax is actually the easiest part of our days, which are otherwise fraught with distracted attempts to adhere to our pre-preemie routines. The books and blogs all say that our stress is textbook, that all parents in our situation struggle with the day-to-day and are kept awake at night with questions they forgot to ask a few hours earlier at their babies’ bedsides.
At Jax’s bedside, I’m absorbed with learning his face. I’ll be noting his expressive eyebrows or how much his mouth looks like mine when — wait, did someone just say chronic lung disease?
Doc: “It sounds worse than it is. We expected it.”
The book said that I would hear “chronic lung disease” and freak out. The book told me that. The book did not tell me that it’s okay or expected or normal for our son to have chronic lung disease.
Take, for instance, the fact that NICU moms can’t breastfeed right away. If they seek to nurse their infants when the time comes, they must pump and bottle their milk so nurses can administer it to baby via a tube. The more often mom pumps, the more her body falls into a milk-expressing routine that mimics the typical feeding schedule the baby is likely to follow when the tube comes out. Pretty straightforward and scientific, right?
Wrong. Breast-pumping lacks the highly emotional, hormonal connection mom and baby share, and which lactation experts often say helps mom’s milk “let down.” If your baby is in the NICU and you’re not filling bottles when you pump, it probably isn’t a physiological problem. Stay hydrated, sure, but the most oft-repeated tips for pumping success have an emotional element: relax, follow a set routine that triggers your flow, visualize full bottles and look at a picture of your baby.
Even Kangaroo care, clinically proven to help regulate preemie vitals, has just as many documented emotional benefits for parents, including increased parent-child bonding and confidence about parenting abilities, lower rates of postpartum depression and a sense of closure about the unexpected end of pregnancy.
Once again, down is up. Our feelings, far from being abstract, are the only part of the NICU experience that seem to be “textbook” or scientifically certain. Jax’s treatments, meanwhile, are a craft, an artistically rendered trial-and-error that has as much to do with his will to thrive as do medical facts.
For example, when the breath of premature infants becomes labored, they’re intubated to breathe from a ventilator. As previously mentioned in the wonderland post, this isn’t a setback, but a chance for the baby to relax and expend energy in other areas, most importantly, gaining weight. Intubation may last a few days, or a week, or two weeks, depending on if baby tolerates it well.
Eventually, though, the cure becomes the disease, so to speak, and intubated preemies can develop chronic lung disease, or bronchopulmonary dysplasia. Preemie lungs are fragile, and the vent can damage them, making breathing on their own more difficult, which means they need the vent more … it’s a spiral doctors seem to be constantly fighting against.
At the first sign of BPD, our doctor decided to extubate Jax, who had been on the vent for nearly two weeks. Maybe extubation will be permanent, maybe not. Preemie treatment is — and forgive the analogy — throwing baby into the water and seeing if he can swim, but being there to rescue him if he can’t (yet).
Every day, Jax gets his feet wet, either with increased feedings, a longer K-care session, a tweak of his caffeine or oxygen levels. Every day, the art of his treatment is a cocktail the doctors mix, shake and stir.
And every day, we are the scientific model of NICU parents seeking certainty where there is none.