“They think they want good government and justice for all, Vimes, yet what is it they really crave, deep in their hearts? Only that things go on as normal and tomorrow is pretty much like today.”
― Terry Pratchett, Feet of Clay
As soon as I found out I was having twins, I knew it would be the dreaded c-section even though I couldn’t get it approved and scheduled until both boys were facing the wrong way the 36th week (couldn’t flip one without endangering the life of the second). I was never one of those people who wanted a natural birth for bragging rights. I just didn’t want a needle anywhere near my spine.
I went into labor a few days early. The anesthesiologist botched my spinal block. From my understanding, it’s supposed to be a single shot that feels no worse than a bee sting. What happened instead were agonizing pulses in my lower back and thighs, like my spine had become a fault line and these were earthquakes. As my profuse vomiting subsided, he snidely asked if I was done because he wasn’t. Fortunately, there was no permanent damage, just the occasional aftershock. I suspect his aim was off, but I never got a straight answer. Surgery went okay, but nobody warned me about the agonizing shoulder pain. Apparently, it’s your internal organs’ way of letting you know they are exposed and don’t like it.
Dieter went straight to the NICU because of a knot in his cord. I didn’t hold him until that evening, a few hours after they made me stand the first time. It felt like my insides were going to fall out. I quickly became more mobile than I should have going into mama bear mode. This was despite refusing the painkillers steely haired nurses kept trying to chuck down my throat when they weren’t undermining my breastfeeding efforts. I dubbed them the Triple Bs (baby boomers came of age when Playboy sexualized breasts and formula companies worked hard to stigmatize breastfeeding). Every mother I met who delivered at St Luke’s in Boise knew exactly who I meant, too. I adored most CNAs, though. I think one was from Barbados. I can’t remember her name now, but I left a feedback card for her then. It felt good having something nice to say.
Xander was sent to the NICU the next day for jaundice and failure to thrive. The breastfeeding consultant didn’t even see me until the third day. The boys’ pediatrician said they had a room for parents in the NICU. The maternity ward insisted such a room didn’t exist until he got the hospital social worker involved. I stayed until Xander was discharged the seventh day. Then I was split in two between home and the NICU until Dieter was discharged the ninth day. Even as a newborn, Dieter had excess energy. He pulled out IVs no matter how much they taped them. One day I was surprised to find an IV sticking out of his head instead of his wrists. I called him Riddick because he reminded us of Vin Diesel with his bald head and those sunglasses he had to wear for light therapy, and his toughness.
Feeding problems continued. The KellyMom breastfeeding “bible” says nobody knows your child better than you, and goes on to tell you how wrong you are if you think they’re still hungry after nursing, pain is perfectly normal, and you’ll fail if you supplement. After a few weeks, I saw another consultant. She identified the problem immediately. The boys had torticollis, which meant they were suffering jaw stiffness and burning more calories trying to eat than they were gaining, even with a bottle. It’s not that uncommon, even though KellyMom only indirectly alluded to it in one tiny paragraph amidst all the mom-shaming.
After a couple months of the boys receiving occupational therapy and taking fenugreek for myself on the consultant’s recommendation, the boys went from mostly formula to entirely breast fed. Take that Triple Bs, Kelly Bs, and Nestle…Bs (we used a brand that was honest about being inferior to breast milk, and didn’t destroy habitats for palm oil or try to monopolize water). Eventually I slept more than an hour, especially when I similarly made sense of conflicting information on co-sleeping. Moms don’t have to be a threat (we’re frigging mammals, it’s the most natural thing in the world) but substance abuse, and beds and bedding can be.
In the midst of all that chaos, there was uncertainty about Xander’s health. During his NICU stay, I’d received a voicemail about Xander having a blood disorder. She didn’t say anything else, only that we’d receive more details the next day. Even then, I was only told his white blood cell count was concerning. At some point the children’s cancer clinic called to schedule an urgent appointment. The doctor was an hour late due to a problem at the hospital. When he finally arrived, he spent about five minutes going “uhm, hmm” as he looked between us and the notes. When he finally spoke, he apologized for his staff alarming us. Xander had mild neutropenia, a low white blood cell count that was not uncommon and often outgrown, but put him at a heightened risk of infection.
He seemed healthy until he began suffering reactive airway disease (RAD) following colds. I didn’t worry the first time he developed a raspy cough because of my own infamous hack from chronic sinusitis. When it worsened, we took him to the ER. They diagnosed him with reactive airway disease, gave him a few oxygen treatments, and sent us home with a script for CPAP rental and liquid steroids. The second time, they all but pushed us out the door without either and we had to go back later that night. A profitable night for them, but a scary one for us. Our insurance company bought a CPAP, and the pediatrician made sure we had liquid steroids as needed.
We’d grown lax by the time we moved from Idaho to WNY until one time when Xander’s lips started to turn blue despite home breathing treatments. Our trip to the ER turned into several days in the hospital. Worrying about overreacting and the medical expense put him in danger and cost more than a proactive approach would have. It was very scary for Xander, but I remained at his side through it all. He was given a maintenance inhaler, but two more hospitalizations for reactive airway disease followed. Eventually he outgrew it. This was around the same time inhalers became ridiculously expensive. I feel for the parents of children with full-blown asthma.
Too often people associate Big Pharma with peddling medications people don’t need ie. opioids, but mostly corporate greed manifests as driving up the cost of life saving medications like albuterol for asthma and insulin for diabetes. Some want to throw the baby out with the bath water. I’ve learned there’s no easy answers, and it’s important to research credible sources, follow the money, weigh risks against rewards, and retain a healthy level of skepticism. I’m most skeptical of things like YouTube and webzines peddling snake oil.
Part of me still worries about Xander. Maybe he’ll be one of those kids whose body reacts poorly to fighting Covid19. Or maybe we don’t worry enough about his brother. There’s still a lot of unknowns regarding who gets slammed and dies or sustains serious lung damage, which adults have strokes, and which children go into cardiac arrest after successfully fighting infection.
Mostly I remember how scared I was when Xander’s lips turned blue, and how scared he was in the hospital even without having to be intubated, and I think of all the other people, including children, who have to go alone, and in some cases, die alone.
Anyway, I’m sorry some people aren’t having fun right now.
We’ve learned to make our own.
