Breastfeeding a NEC Baby

August 17, 2012

When our son was born at just 3lb. 9oz., due to growth restriction, I thought his 36-week delivery would insulate us from a “real NICU” experience. Oh girl, what was I thinking? I’m the mother of five and had successfully nursed four previous babies for a combined 4.5 years. I was feeling a little smug when the nurse asked if I was planning on breastfeeding.

Then came the emergency c-section and a first-class hospital grade pump because I was unable to go to the NICU for those early feeds. While I was hopped up on hydrocodone and puking my guts out, my husband assisted with the pumping – all 1cc of it. I cried big, fat elephant tears and still nothing. The NICU started my son on formula while I pumped and prayed for my milk to come in. I’ll come back to that guilt in a moment.

After three days of pumping, my milk came. Yahoo! But, then I couldn’t get Luke to latch. More tears. A call to the lactation consultant. Okay, several calls and consults with lactation. In nine days, the best I got was an eight-minute latch. I felt like a failure. Then, he got necrotizing enterocolitis (NEC). It was so severe, he was emergency transported to our local children’s hospital and underwent surgery to remove part of his small bowel.

For two more weeks, I pumped. Every three hours during the day and every four at night. I had people tell me, “Oh, you’re so lucky. You can really rest and recover while your son is in the NICU.” I held back my tears. They had no idea. While the milk tended to flow a bit better when I cried, I longed to nurse Luke. After two weeks of bowel rest, the NEC came back and so did the breast pump. We waited another week and then were finally given the go ahead to reintroduce feeds.

It was slow and painful and exciting, all at the same time. After long discussions with our neonatologist and the dietician, we opted to only give him breastmilk, rather than fortifying it for extra calories. I was convinced, and still am, that those foreign substances contributed to his NEC diagnosis. There is not a planet large enough to house the guilt I felt, thinking that my lack of milk production and the introduction of formula caused his NEC.

Over the next 18 months, I continued to breastfeed, but just when we would hit our stride an illness or hospital stay would strike. Every hospital stay included bowel rest and so I pumped some more. We used to joke with the nurses that we needed an extra person just to carry all my pumped milk.

In total, I spent more than three months pumping which translated into a freezer full (no really) of milk. Gallons and gallons. With that milk, I squeezed in extra feedings, used it for his cereal, relied on it to give him valuable antibodies when cold and flu season hit and donated much of it to help other NICU babies. With an incredibly sensitive gut, I have no doubt that my breastmilk helped us avoid a plethora of complications and illnesses.

As we navigate the dizzying number of specialists, I remain hopeful that all those hours I spent pumping liquid gold strengthened his cognitive abilities. Because of all the things in my life that were spinning out of control, the one thing I could do was nurse Luke. It was the one thing I could do, because I felt like a failure everywhere else. In hindsight, I believe it was a gift. God knew that I could handle many things, but he had to throw me a bone. For me, it was the ability to pump enough milk to ease Luke’s suffering.

When the gastroenterologist prescribed a high-calorie supplement to boost his weight gain, you can bet I researched it. It ended up being a wonderful transition from breastmilk to more sustainable food. At 17 months, Luke had his last nursing session. Today, as an almost three-year-old, I can positively say that he is thriving. His journey of eating, however, has been an uphill battle. He struggles with sensory challenges and various textures, all as a direct result of his NICU stay. While the NEC has long left his body, its effects will be with him for a lifetime.

It wasn’t until my NICU experience that I realized what a tenuous balance there is with nursing a preemie. So many emotions are tied to a mother’s ability to nurture her child. No matter where you fall on the breastfeeding spectrum – from no production to too much – know that nurturing your child is your most important gift, in whatever way you’re able.