My daughter is a NEC survivor.

My daughter is a NEC survivor. NEC or Necrotizing Enterocolitis is a devastating disease that largely affects preemies, born prior to 28 weeks, and more commonly with a low birth weight. It usually occurs within the first several weeks of life and is stimulated by the start of tube feeding. NEC is the leading cause of death in the NIC and 15% of survivors go on to develop other complications.

In the first week of Eliana's life, she was close to becoming a part of the NEC mortality statistic. Watching your child's stomach expand, turn blue, and be taken off of feeds of your milk, the one thing you were told that you could do for your child, was devastating and frightening. The first call I received from the NICU was at 2 AM to authorize the insertion of a Penrose Drain to try to stop the damage from her perforated bowel. That call set the bar for me for my entire NICU journey, always waiting for the phone to ring, for the next awful phone call about my daughter.

Before we knew it, we received another call. We would be waiting 7 hours for her to be transferred by ambulance one mile to the Level 4 NICU for surgical observation. The most terrifying moments of my life to date were in that first week. The day she was born, and the night she was transferred. We were initially told that she would be going into surgery upon arrival. When she arrived, we were taken back and told to look at a DNR. She could die from this surgery, being barely over a week old and 2 lbs, so we needed to be prepared. We also had to be aware that if they opened her up and saw that her entire bowel had been deemed inoperable from the NEC, she would be closed up and have hours or days left. We were given 5 minutes to talk it over and I remember praying and crying to whoever was in charge of this world to take me instead, as my husband rocked me and cried for all that we were losing.

Thankfully, after evaluation by the Chief of Surgery, we were told she was not in need of emergency surgery. That we could in fact, give her time to grow with TPN feeds and get a little stronger before we go in to look at her bowel. The fear of losing her was put away, and we waited. 156 days, three Grade 3 IVH's, a Broviak insertion surgery, a bowel resection, an ostomy bag, a reversal of said bag, and 2 fungal infections later, we were finally sent home.

1 year post NICU, we continue to have issues with feeding, constipation, acid reflux, vomiting, and developmental delays. NEC research is still extremely underdeveloped. The frustration I feel knowing that prevention and long term effects are still so largely unknown is palpable. NEC Awareness is SO important, and hopefully, through stories like Eliana's and through organizations like The NEC Society, Necrotizing Enterocolitis will one day be preventable, and easily treatable.

Eliana has some serious warrior princess scars from this disease, but I will always be thankful that I still have her with me, scars and all.

-NICU Mama Alex