In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.
In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.
Almost all preemies have difficulty with feeding, and my boys were certainly no exception. In order to eat, a baby has to be able to suck (at the breast or bottle), swallow, and breathe. But not at the same time, of course, and trying to coordinate that is very difficult.
Mr. D was born with the ability to do all three. He never required oxygen support, could generally swallow what was in his mouth (although he did need “reminding” from time to time), and could hold onto a pacifier, bottle, or my nipple like a pro. What he couldn’t do was figure out how to do all three in such a manner to ingest enough milk to live…especially when he’d rather be sleeping.
D’s challenges were fairly typical for preemies. Eating is hard work. So hard, in fact, that a twenty-minute rule is placed on both breast- and bottle-feeding in most (all?) NICUs: the baby gets 20 minutes to eat all he can, and then is weighed (if breastfeeding) or the amount remaining in the bottle is examined, and the rest of the required meal is poured down the feeding tube. I wanted to breastfeed, but was told we could only attempt it twice a day, as it’s even more work to extract milk from a breast than it is from a bottle.
The first time I breastfed Mr. D, he took me by surprise. He did really great! The lactation consultant warned me that many babies take one or two good feeds from the breast, and then begin to struggle. That was the case for him: he could extract a few drops of colostrum, especially when I pretty much hand-expressed it into his mouth, but once my milk came in, it was beyond him. He would latch on, and then fall asleep.
He didn’t fare much better with the bottle. I was taught how to hold him, how to stroke his cheek or under his chin to “remind” him to swallow, how to burp him, how to tickle his feet when he was nodding off…and he would still only swallow a few milliliters. He would sometimes become fearful of the liquid in his mouth, and hold his breath until I sat him up and helped him to dribble it all out. But mainly he would just look up at me, with an expression of what felt like disdain on his face, and then close his eyes. He held onto the nipple (mine or the bottle’s), but that was it. That was all he wanted to do.
The nurses told me it often happens like a switch—nothing, nothing, nothing, BOOM: eating! That wasn’t the case for Mr. D. Instead, he’d take a few more milliliters each day, most days. What was exceedingly frustrating to me was that, as his weight (from his oral plus tube-feedings) increased and his IV-nutrition was tapered off (to end abruptly when he yanked out his second scalp IV and they couldn’t find better access), his required intake went up, too. He was supposed to eat 23 mls, and would manage 19, and I’d go home to pump in triumph, only to return to discover they’d raised his goal to 26.
But he did improve. He kept getting so close. I felt like we were nearly there. Feeding was the only thing keeping him in the NICU, and I wanted him home.
He developed reflux. My pediatrician tells me “100% of babies have reflux”, and I don’t doubt her. Mr. D’s was worse than some, which again is common with preemies. That muscle at the top of their stomach (cardiac or esophageal sphincter) is as weak as their other muscles, and is forced into doing its job way too soon. One of his day nurses asked me if there was a history of milk intolerance in my family. Yes, there is: I was allergic to milk protein for my first few years of life. She suggested eliminating dairy from my diet, in case Mr. D had the same problem. I did. We also began fortifying his breast milk with soy formula rather than the special preemie formula. (Breast milk has about 20 calories, and it is very common to add formula to it to boost that to 22, 24, or even 27 calories for premature babies, as their tiny stomachs can’t hold enough volume to give them their necessary caloric intake.) I don’t know that it made much difference, but I was willing to try anything.
On his tenth day of life, he pulled out his NG-tube for his tenth (estimated) and final time. He wasn’t meeting his goals, but they decided not to replace it. He did well, getting closer and closer. On his thirteenth day, we were told we could take him home the following day: Valentine’s Day.
At 6 am on V-Day, I got a call from the neonatologist. She was just coming on shift having been gone a few days, and she didn’t think we should take Mr. D home. “He simply won’t grow on this,” she said, referring to his intake and reflux. I asked her if she was planning on re-inserting his feeding tube. No, she was not. Then why? What could they do for him that we couldn’t do at home? “He simply won’t grow,” she insisted. We reached an agreement: if Mr. D could eat all 55mls of each of his day feedings that day, and I agreed to take him to his pediatrician in two days instead of three, I could take him home. She strongly implied that she disagreed with this, but not enough to rule it out.
Challenge accepted, I thought. For each meal, I stripped an irate baby down to just his diaper. There was no way I was letting him get warm and comfy. I did not alert the nurses to his small spit-ups during burping. I twice emptied the remaining 2-3 mls of milk into the burp cloth at the end of his 20 minutes. And he got to come home with us that evening.
Mr. A could neither suck nor swallow nor breathe at the start. He did take early breaths on his own, but with much effort. The NICU staff quickly determined that he could not maintain his breathing, and gave him surfactant and intubated him. Once extubated, no one was surprised that he could not suck. He actually had the reflex, and would happily gnaw on a Soothie if it was held in his mouth. His cleft soft palate, however, left him with the inability to form negative pressure in his mouth. As such, he could not draw liquid from a nipple, nor could he hold his own pacifier in his mouth by sucking merrily to sleep. In order to assess his ability to swallow, the neonatologists had the nurses perform what I have since learned is a very outdated “test”—they poured sterile water into his mouth. They assured me that, if inhaled, it would not cause any problems, as it was sterile and a very small amount. The first time they “tested” him, the liquid slowly dribbled out of his mouth. He could not swallow. They repeated the “test” two days later, and he “passed”—the water went down somewhere, and they assumed it went down his esophagus. He was cleared to begin oral feeds.
I was introduced to a variety of bottles and nipples, all specially designed for babies with clefts. I was a bit dismayed to realize most of the nurses had no more familiarity with these “feeding systems” than I did. Essentially, they all worked the same way: a nipple was placed into A’s mouth and he chewed on it and the nipple released milk due to compression. Some of the bottles were squeeze bottles, so that I could force extra fluid into his mouth.
It was a disaster. I was too naïve to realize how large of a disaster it truly was. Only once did Mr. A take in over 10 mls (two teaspoons). Feeding him generally went like this: hold him in a specific way (hands angling his jaw upwards, entire body elevated to at least 45 degrees, while trying to support his head and body but not of course cradled in my arms), introduce nipple, watch him struggle, watch him desaturate (often followed by heart rate decelerations), fearfully yank the nipple out of his grey-blue lips, let him recover, repeat. At the end, measure remaining milk and discover only a handful of milliliters to be missing, and then pour the remainder down his feeding tube while snuggling him to sleep.
After a few days, I told the nurses I no longer wished to feed him by mouth. I was terrified. I could feel, somehow, that his desaturation and bradycardia events were different than Mr. D’s episodes of breath-holding. I hated feeding him, he hated eating, I feared I would kill him. The nurses told me I didn’t have to do anything I wasn’t comfortable doing, meaning they would continue to do his feedings for me. That wasn’t entirely what I meant, but I was too insecure to argue. And so he struggled along for a few more days, with me or my husband holding him while the nurses fed him. I came to accept his “behavior”—after all, he was gaining weight and showed no ill signs. So I resumed the feedings.
When he was transferred to the children’s hospital, he was evaluated by their feeding and development expert. I wasn’t there (we were not forewarned of it, or I would have been!), and came to his crib an hour later to be informed by the nurse that he was no longer to eat by mouth. Ever. He would need a surgically placed tube going directly into his stomach. I was irate. He had been, I thought, showing signs of improvement. And here some lady looked at him once, did not even give him a chance to truly try, and ruled out eating for the rest of his life? I made the staff aware of my displeasure, and they promised me she would speak to me. She didn’t, not for some time.
Mr. A was eventually given a swallow study: he sat in a car-seat-like chair, being fed radioactive barium mixed with breast milk to various consistencies: pudding, nectar, thin. X-ray-like machines videotaped the entire event. And there it was in black and white: Atticus was drowning. The milk went up his cleft palate and into his nasal cavity, and from there it entered his trachea and lungs. What remained into his mouth also largely ended up in his lungs. He was unable to cough to protect himself. My baby boy had silent aspiration.
I felt awful. Guilty, guilty, guilty. If I’d held my ground at the first hospital, if I’d truly listened to my instincts, we would have stopped feeding him by mouth weeks ago. He must hate me. He must fear me. My job was to keep him safe, and here I was, endangering him every three hours on the dot. And my pride, my pride at what I thought was improvement and my wrath at the feeding therapist, who had told me what I had been unable to believe, as if my wishing could make those drops of milk enter his stomach safely. “He was took 13 ccs!!” I had argued, over and over, his record amount so strong in my memory. Almost half an ounce, I was forced to admit, almost half an ounce of my milk flooding into his lungs.
It did not occur to me until almost a year later that who I should have been mad at, instead of myself, were the doctors and nurses at his birth hospital. I was in over my head, but so ignorant I had no idea. They should have known. They should have recognized what I felt in my heart and what led me to ask to stop: this was not normal preemie behavior. None of this was typical. And they didn’t. True, the most challenging preemies are probably passed off to the children’s hospital sooner than my Mr. A was, but watching for signs of aspiration is not a difficult art, and it’s one that should be taught to and remembered by everyone working with sick babies.
Mr. A got his G-tube placed when he was negative-one-week, adjusted. His feeding plan was changed to reflect that, while he was not to eat by mouth, certain exercises could be done to help stimulate his oral-motor skills. Feeding has continued to be one of his biggest challenges, but I am happy to end this by saying that we are now very close to replacing one of his 5 daily tube-feedings with an entire meal eaten by mouth. And as for Mr. D, he is an avid eater, and above the 90th percentile in both height and weight. The suck-swallow-breathe struggles are behind us all.