Readers of my book Spot 12: Five Months in the Neonatal ICU have told me they want more. They want to hear what happened to Asa next, and how our family continued to grow, learn and survive. So this summer I’m putting together some posts to fill this request. Here is the first installment.
Things got so much better once we were able to leave the hospital, but it wasn’t easy. We did our best to manage the chaos, discover how to live in the outside world with Asa and all she required, weather the crises that arose, and generally survive the stress that was through the roof on a daily basis. The business of feeding Asa and maintaining an open airway was non-stop, messy and often scary, but we could go on walks, to parks, and eventually friends’ houses and other places. For the first year and a half any kind of group activity was impossible, and even the library was barely doable. The suction machine was loud, the supplies were cumbersome, the looks from strangers were withering, and Asa’s puking was spectacular.
Let’s talk about the puking. The coughing and suctioning because of the trach triggered Asa’s gag reflex, and combined with her compromised esophagus she puked the full contents of her stomach several times a day. I was still pumping and we tube-fed her breast milk exclusively for her first year. We went home from the hospital with an elaborate tube feeding pump that we quickly abandoned in favor of using syringes to put milk in the tube. Since Asa had so much difficulty keeping anything down, we eventually were feeding her very small amounts every half hour. I often felt that it would save a tremendous amount of cleaning and laundry if I just dumped the milk I pumped straight into the washer. Once at a hospital visit Asa puked on my shirt and on my pants in such a way that it appeared that I had puked on myself and also wet my pants. We were in a public area and we had to wait for 20 minutes like that for Chris to pick us up. Another time we stopped into our neighborhood Ethiopian restaurant for takeout and Asa puked gallons all over their floor. Another time Chris took her to the grocery store and she puked gallons just as he was trying to pay and wrangle the groceries with a whole line of people behind him.
Somehow though, Asa absorbed enough calories to grow and thrive. She was happy. She learned things. She had fun. Somehow we managed to keep her afloat and despite the craziness, she had a good life. We found lots of ways to be creative and find solutions to living within the limits. The fall and winter before her first birthday there were many days when the Vancouver rain was so heavy going out was unthinkable. We had a small one bedroom apartment, and I set up Asa for playtime in different spots –like spending 20 minutes in the bathroom with blocks– and with interludes of going out for interludes in the rain, so that she would feel like the day had variety.
One saving grace was that we got Asa an exer-saucer, having her upright was helpful with the puking, and since she couldn’t crawl yet allowed her to play with toys and turn around when she wanted. Another saving grace, of course, was friends. There was one particularly bad day when I had been up since 3:00 in the morning (I still slept very little). Asa’s G-tube came out accidentally and I had to get a neighbor to help me so I could get it back in. We got used to the G-tube coming out eventually, but that day it was a new situation and added a lot to the stress load. In addition, Asa was especially pukey that day. By late morning we had gone through the feed, puke, change clothes cycle about six times, and I had to turn my back on her so she wouldn’t see me crying. Just when I was at the end of my rope my friend Teresa came by with her infant son Griffin. Griffin was younger than Asa but already crawling, and as soon as Teresa took him out of the carrier and put him on the floor, he marched straight over to Asa. He actually crawled, rather than marched, but you have to imagine a march-style crawl. They were instant friends. I felt like having Teresa there saved my life that day. Two friendly faces, and something going on besides me being crushed by my desperate exhaustion, at that moment was everything I needed.
One time, a month or two after leaving the hospital, when Asa was six or seven months old, a friend of mine asked me if I had wanted to “throttle” Asa yet. This was a well intentioned comment, the kind that hopes to normalize the frustrations of parenting an infant, and I understood that, but all the same hearing that felt like a kick in the face. If you’ve seen your baby nearly die from asphyxiation, and watched her struggle to breathe the whole of her life, you just don’t imagine throttling her yourself. As freaked out as I ever got I never once got angry at Asa. It was so clear that none of this was her fault, and so clear that she had been through a lot of hell. Every time I recalled that comment, which unfortunately haunted me for months after–a testament to my state of mind–I felt that kick in the face all over again. However, the larger context was this: we were at home, we were not any longer in the hospital. This point of reference made the worst day a hundred times better than all the days in the NICU. And even more than that, Asa was growing, Asa was healthy, Asa was happy. This is what kept me going.