Hand to Hold's Official Blog: Written by Parents for Parents

Breastfeeding a NEC Baby

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.

Kathryn Whitaker About Kathryn Whitaker

Kathryn Whitaker (TX) is the mother of six (including two 36-week preemies).  Her fifth child was diagnosed with IUGR (intrauterine growth restriction), born at 3lbs. 9oz. and then developed a severe surgical case of necrotizing enterocolitis (NEC).  He has various medical needs as a direct, and indirect, result.  On her personal blog, Team Whitaker, she writes about what she knows: big families, carpool, kids activities, faith, her beloved Aggies, specialist appointments and sanity checks with her husband.  You can follow her on Twitter, Facebook and Pinterest.

Comments

  1. What a beautiful post, Kathryn. I really identified so much with your statement about how many emotions are tied up in a mother’s ability to nurture their child and the unique challenges of nursing a preemie. For me, giving my preemie breastmilk (from pump and breast) was profoundly healing (though hard and not without difficulties!)

  2. This article tugged at me like nothing else. My 24 weeker developed NEC , luckily I was able to get my milk in but he was not able to get much. He was delivered, I pumped, he was given my milk via ng tube and then developed NEC, had surgery and since that feeding he has not had any breast milk and medically could not. I religiously pumped for 6 months hoping that he could eventually nurse, no luck. I am happy to hear about a NEC baby that was able to receive breast milk and slightly jealous that you were able to provide your son with milk. I know that he is here and healthy but to this day I see women nurse their children and I want to nurse Landon but there is nothing there anymore( lol). I nursed my oldest and loved it, it was a great experience and I don’t understand why women don’t nurse when their children can receive mothers milk.

    • Rebecca, thank you for sharing your story. There is a tinge of regret I feel when I tell another NEC mom I was able to nurse because I know so many can’t for various reasons. That is awesome you pumped for so long. I hope another baby was able to benefit from your sacrifice.

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