Tuesday, October 29, 2013

Jaundice, Part I: Baby Boy Turns Yellow

This is the first in a two-part feature on jaundice. In this post, I'll tell you Baby Boy #4's jaundice story, and in the next post I'll address jaundice from a more clinical perspective. Now that Baby Boy has been named, we'll call him Y.

At 5:30 a.m. on Tuesday morning, when Y was about 27 hours old, the nursery did a heel stick to draw blood for his PKU test. This is a standard newborn screening done at approximately 24 hours of age. At the same time, they checked his bilirubin levels to see if he was at risk of needing treatment for jaundice. Most people know jaundice as a yellowing of the eyes and skin due to various problems associated with the liver. In newborns, it's a relatively common condition due to the breakdown of excess red blood cells in the baby's body after birth. Most babies will clear out the bilirubin on their own without needing special interventions, but some babies will have bilirubin levels high enough to elicit concern, as very high levels of bilirubin may cause irreversible brain damage called kernicterus.

But back to Baby Y. When the pediatrician came in to check him over and report on his test results, the first words out of her mouth were, "Did any of your other kids have jaundice?" When I told her all three had, and two had required home phototherapy, she nodded. She showed me his bilirubin level, which was 8.6. For his age, this was considered "high intermediate risk". If the number climbed into the "high risk" zone, he would require treatment. The chart below is the standard risk chart for newborn jaundice. You find the baby's age in hours along the bottom, then plot the bilirubin level on the left and see what curve you fall along. A level of 8.6 in a 28-hour old baby was near the high end of the high intermediate risk zone.

The question then was, do we take a wait-and-see approach, or do we take it on more aggressively, knowing that (a) all three of his brothers had relatively high bilirubin levels, and (b) he was already nearing the high risk zone? Levels usually peak between 4 and 6 days of age and then fall off gradually. To clear out bilirubin, the baby needs to poop, which means the baby needs to eat. Since breastmilk supply doesn't usually increase until day 3, and most babies under 3 or 4 days of age are still clearing out meconium, it takes a few days for the excess bilirubin to be excreted. I was still only producing a small volume of colostrum, and Baby Y wasn't pooping much, so we knew his levels would continue to rise for another day or two, at least. But we didn't know if they'd rise sharply or level off. There's really no way to know what will happen in any given baby.

I had been planning to go home on Tuesday, though I was technically entitled to another night in the hospital if I wanted to stay. The pediatrician suggested that I stay Tuesday night and let Baby Y have jaundice treatment through the night. In this way, we might be able to bring down his bilirubin levels to the low intermediate risk zone and then, even if the levels continued to rise a bit for another day or two, they would likely stay on that low intermediate risk curve. If we didn't treat Tuesday night, we would need to monitor him closely (by taking blood daily to measure his bilirubin levels), and if his numbers rose into the high risk zone, then we would need to treat, which might entail readmission to the hospital for him, meaning I'd have to find a place to stay because I would no longer be an inpatient there.

This put us in a tricky position. On the one hand, I really didn't want to spend another night in the hospital. I wanted to get home to my other three kids, I wanted to come back to life and out of the sickly-feeling, "I'm in the hospital" mode. On the other hand, it seemed the easiest way to ensure that Baby Y's jaundice would be managed with the least amount of hassle. A secondary, but real, consideration was that if his jaundice became severe, his bris would have to be delayed. This had happened with our second baby, and we needed to know if that would be necessary for Baby Y. It seemed that treating him Tuesday night would stave off this potential complication as well.

The pediatrician suggested that we talk it over and that she order another blood test for the afternoon. If the number still placed him on that high intermediate risk curve, or, G-d forbid, was even higher, then that might help us decide for sure whether to stay the night or not. I agreed that this was a good suggestion. So, at 36 hours of age, his blood was taken again, and his bilirubin level was 10.7, still on the high end of the high intermediate range, and likely to continue to rise for at least another day or more. We decided to take the aggressive approach. The goal was to keep him under the "bili lights" for the night, in the hope of getting his bilirubin levels to level off or even drop. If the numbers fell into the low intermediate risk range by morning, then we could feel comfortable going home and not worry so much about having to be readmitted for treatment or taking blood daily to monitor him. A clinical approach, visually examining his color, looking at other symptoms, would be enough to monitor his health, and further testing or treatment would only be required if any other symptoms gave his doctor or me cause for concern. (I will discuss all of these symptoms and risks of jaundice in part II of this article.)

At about 7:00 p.m., Baby Y was whisked off to the NICU to be placed under the bili lights. Basically, bili lights are flourescent, blue lights that break down the bilirubin into a water-soluble form that the baby can then pee out, in addition to the bilirubin being excreted in his bowel movements. It's important to maximize the amount of skin exposed to the lights, so the baby is placed in his bassinet in only a diaper, on top of a pad that shines light up against his back. The bassinet is then placed under a second light that shines down from above him. He wears eye covers to protect his eyes from the bright lights, and he basically just sleeps there. The baby should eat about every three hours but should not be off the lights for more than 30 minutes at a time. The idea is to find a balance between maximizing his time under the lights while still getting milk into him so that he can pee and poop. It's a tricky thing, especially with a newborn who wants to nurse a lot but is still getting colostrum and not the mature milk that will encourage more wet and poopy diapers!

It was strange for me, to spend a night in the hospital without my baby by my side. It was also strange to visit him in the NICU, my otherwise big, healthy boy in there with the sicker babies who needed so much more care. We got off to a bit of a rocky start, too. He was there only about 45 minutes before he was brought back to my room, screaming. "He says he's starving!" my nurse said. I nursed him, then wheeled him back to the NICU to go back under the lights. The nurses there were trying to get him to take a pacifier, but he was protesting it.

I was advised that if he was going to need to eat so often, the lights wouldn't be very effective. The protocol was three hours on, 30 minutes off, but he wasn't willing to go three hours without nursing. And normally I would have been perfectly fine with that! A two-day-old baby shouldn't necessarily go three hours without nursing, both for his sake and for mine! His suckling encourages my milk production to increase, as well as nourishing him and stimulating his digestive system. I was happy to feed him every hour or two, but that would render our night in the hospital ineffective. I was frustrated, and so were they.

One of the nurses told me that giving him a little formula would probably help, since it would fill him up so he could wait longer to nurse again, and it would make him pee. Without peeing, he wouldn't clear out the bilirubin. "You have to decide what's your priority - breastfeeding or treating the jaundice," she said. I felt a bit threatened or judged, like maybe by clinging so hard to the "exclusively breastfeeding" mantra, I might be causing my baby harm or wasting my time (and hers?). I was taken aback. I had made it clear that he was not to receive formula, his case of jaundice wasn't severe (yet?), and I was educated enough to know that giving even one bottle of formula when supplementation wasn't medically necessary could cause long-term harm. But I'll tell you something, in all honesty: I almost gave in. I was desperate for him to stay longer under the lights. I was so nervous about "wasting" our extra night in the hospital. I really wanted this treatment to work. And if a couple ounces of formula was all he might need...I hesitated. I felt like I was already breaking so many "rules." Here I was, a trained Lactation Educator, on my fourth baby, a self-proclaimed breastfeeding advocate and expert, and my baby was spending a night in the nursery, being offered a pacifier, and now I was thinking about delaying feeds and supplementing with formula besides.

I gathered myself. "Breastfeeding is my top priority," I told the nurse. "I don't want to mess up his gut with a bottle of formula if he doesn't really need it." If my head had been more in the game, I would have known what to do immediately, but since I was groggy from two nights without sleep, thrown by this change of plans, and caught off guard by this sudden suggestion of formula, I couldn't think of a solution. "Maybe he'll go longer this time," I said, and went back to my room.

The first thing I did back in my room was Google "formula supplementation for newborn jaundice" on my phone (thank G-d for smartphones!). I thought I remembered reading an article from the Academy of Breastfeeding Medicine on whether formula supplementation for normal newborn jaundice was necessary or standard protocol, and I wanted to refresh my memory. I found exactly what I was looking for (PDF). In short, formula supplementation is not recommended for treatment of newborn jaundice unless there are other complicating factors. Short-term formula supplementation can have long-term risks. While it will help to clear the jaundice, it may interfere with establishing a good milk supply, may cause nipple confusion in a baby who is still learning to latch and breastfeed, and will cause the gut flora to be affected by introducing cow's milk proteins and non-breastmilk compounds into the developing digestive system. My Lactation Educator classes came back to me in a rush, and I remembered what we had learned about jaundice and supplementation. There are indications for short-term "interruption of breastfeeding" under certain conditions, but my baby and my situation did not call for such a drastic measure at this point.

And like that, I knew what I needed to do. I marched myself (figuratively) back to the NICU and found a different set of nurses sitting near my sleeping baby.

"Is the reason you'd want to supplement because you could feed him while he's still under the lights?" I asked.

"Yes," one of the nurses said.

"So, if I were able to pump some colostrum, you could feed him that instead of formula?"

"Sure. We do that all the time. Ask your nurse to get you set up with a pump. You can bring us whatever you pump."

I tracked down my nurse and explained what I wanted to do. She said no problem, and within the hour, I was set up with a pump and had started harvesting that precious, precious liquid gold. I felt if I could get at least 10mL (about a third of an ounce) in any given sitting, that should be enough to tide him over between the every-three-hour breastfeedings. I had a mild concern that giving him bottles might affect his desire and ability to latch, but I felt it was worth the risk. At least by pumping between at-breast feedings, I was giving myself the breast stimulation I'd need to establish a good milk supply, as well as giving Baby Y the colostrum he needed to keep him full and happy and able to pee and poop.

On my first go, I got 10mL from both breasts. Thrilled with my success, I happily delivered my first of what would be five 10mL bottles of colostrum that night. In between 30-minute feedings and 15-minute pumping sessions, I'd conk out, sleep for an hour or 90 minutes, to be awakened from a weird dream or a deep sleep by my nurse wheeling in a crying baby ready to breastfeed again. Tired but pleased, morning came and we eagerly awaited his latest blood test, to find out the result of our night's effort.

Liquid Gold

After 12 hours on the bili lights, at 51 hours of age, his bilirubin levels were down to 9.9, lower than they had been at the previous test, and down into the low intermediate risk range for his age. Yes!

We came home later that morning with instructions to have him seen by his regular pediatrician on Thursday. His doctor checked him over and decided that doing another blood test was not necessary. He told me to keep an eye out for more yellowing, lethargy, or not waking to feed, but as long as he was producing diapers, was waking up when he was hungry, and was feeding well, he was not concerned.

Thankfully, Baby Y's breastfeeding was not negatively affected by the use of a pacifier or by giving bottles. My mature milk appeared, on cue, at about 2.5 days postpartum, and he began gaining weight at an incredible rate. At hospital discharge, he was 7lbs., 14oz., about 8 ounces below his birth weight of 8lbs., 6oz. On Thursday, he was up to 8 pounds even, and on Friday, he had gained an additional 3 ounces in 24 hours, to reach a weight of 8lbs., 3oz. Though he has not been weighed since, I'm certain that he has surpassed his birth weight already, at eight days old.

In the next article, I'll discuss jaundice from a clinical angle. I am grateful that I had the experience and educational background to be able to effectively advocate for myself and my baby. Don't be afraid to do your own research and ask questions. When it comes to your baby's health and your breastfeeding relationship, it's important to speak up!


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