Where to begin? Somehow, we moved from exclusive breastfeeding, the most “natural” thing in the world, to formula feeding through a nasogastric tube, a medicalized method of feeding that we’ve yet to make peace with and hope to leave behind soon.
Stella stopped wanting to eat sometime ago. It began slowly. Practically imperceptibly. At around 5 1/2 weeks, I noticed she’d cry sometimes while nursing. She’d gag or choke on the milk a bit. So I tried nursing her in different positions, in an effort to slow down the flow of milk. It seemed to help, but she wouldn’t eat for very long. Of course, we’d seen a lactation consultant early on who told us with much enthusiasm that Stella was an incredibly efficient nurser who managed to take in a lot of milk in a little time, so it seemed okay.
Then, there was the ER trip in early October when she was eight weeks old. She vomited and had blood and diarrhea in her diaper. After x-rays, blood work and a stool sample came back looking good, they suggested that I stop eating dairy as lactose intolerance was the most likely explanation. I would go on to give up dairy for two months. (As a friend put it, this was “a fate worse than death.”)
Soon after, at her two-month appointment, we learned that she wasn’t gaining weight as quickly as expected. She’d dropped from the 50th percentile to around the 25th. We were alarmed, but she seemed happy and didn’t seem have too much trouble eating at that point, so we didn’t panic. However, week after week of slow weight gain along with Stella’s increasing aversion to eating soon made it clear that something was wrong. We had to do something. But what?
Well, first we switched doctors. Her pediatrician was nice enough, but didn’t take our concern very seriously. He said, and this is a direct quote, “Just keep feeding her.” Sigh. I also met with two lactation consultants several times each. Meanwhile, I spent all day every day just trying to feed her. The stress was unbearable. My milk supply had gone down in response to her taking in less, so I was pumping around the clock as well. A typical day entailed monumental, constant feeding efforts. I fed her by breast, often with a leaky, pain-in-the-ass supplemental nursing system, by bottle (though she really didn’t accept it from me), and even one milliliter at a time via medicine dropper, all in a desperate attempt to provide her with adequate calories. I was on the verge of a nervous breakdown.
Finally, one of the lactation consultants witnessed Stella’s refusal to eat and was convinced that she suffered from reflux. Because Stella didn’t spit up or vomit, her reflux was harder to detect (it’s called “silent reflux”). Soon after, Stella’s new doctor prescribed Zantac to reduce the acidity of her stomach contents and therefore alleviate the pain of reflux. She also recommended that we collect a stool sample for a “reducing substances” test that could shed light on whether she was lactose intolerant. After weeks of trying, we finally got one, and testing showed that there was indeed lactose in her stool. The lactose wasn’t being broken down, indicating temporary (or secondary) lactose intolerance–the kind caused by damage to the GI tract, which babies outgrow by around one year of age. (Later we would learn that it wasn’t that simple, but it was nice to finally discover a big piece of the puzzle.)
Also at the suggestion of the lactation consultant and in cooperation with Stella’s doctor, we got in to see a feeding specialist–a renowned occupational therapist–at Seattle Children’s Hospital. She was struck by Stella’s intense level of upset and adamant refusal to eat. A few days later, after another week of low weight gain, we were admitted to Children’s for what ended up being a four-day stay. They placed the nasogastric tube (so traumatic!), through which she is fed hypoallergenic Elecare formula. Whatever she refuses to take orally, she gets through the tube. (Mistakes were made at the hospital which painted an inaccurate picture of her status and therefore resulted in less than optimal decision-making. I will explain all of this in a future post. None of the missteps were devastating, but I believe that sloppiness and inattention clearly diminished the value of our stay. )
The formula has helped. She is a lot more comfortable now. For several reasons, we moved on to a new pediatrician who has more direct connection and access to Children’s. He has seen this in many babies, and believes that Stella has a cow’s milk protein intolerance (simply put, dairy is one of the only things that passes through in breastmilk without being broken down), which irritated her gut and impaired her ability to break things down, including lactose and fatty acids, which were both detected in her stool sample. A stool sample taken after a couple weeks on the formula came back normal, so as emotionally difficult as it was to move away from breastmilk, we know the formula has made a clear difference.
At this point, reflux and eating refusal remains. During and immediately after her hospital stay, her intake by bottle had improved a great deal. But since then, it has regressed, a difficult reality for Cody and me to accept. However, her doctor, who is wonderful, says that many babies regress while on the tube, but that she should rebound and pull through in time. Our biggest challenge these days is to stay positive and to keep the faith even when eating doesn’t go well.
We see both her doctor and occupational therapist (who provides us with new strategies aimed at making eating more enjoyable for Stella) weekly. We will meet with a pediatric gastroenterologist at the end of the month. We are strongly considering allergy testing, craniosacral work, and an adjustment in her reflux meds. We track every milliliter that she takes and doesn’t take, enter it into an Excel spreadsheet and analyze it in graphs and charts. At night, we wake up every three hours to feed her by pump so that she can get enough calories and a good night’s rest. We are doing everything we possibly can. We have gone above and beyond since the beginning of all this in an attempt to help Stella thrive. There is a sense of peace that comes with knowing this.
People called me a warrior after Stella’s 32-hour, unmedicated birth. But, looking back, it wasn’t true. I didn’t become a warrior, or earn my stripes as a mom, until all hell broke loose. Until Stella struggled, and I proved that I would move heaven and earth to help her even just a little bit. I’m proud of that. I’m proud of Cody for his incredible sacrifice, support and efforts. And I’m proud of Stella. She’s happy, healthy and sweet as can be. She is doing the best she can given her early, unfortunate experiences with eating.
Her mom is as stubborn as they come. So it really comes as no surprise that our little girl is as strong-willed as can be. She is such a wonderful, strong character. As hard things are right now, one thing is for sure: she is going to be just fine.
Much more to come.