Anyone deal with NEC?

My son is well past his preemie days, but I still have nightmares about NEC. He was just barely premature at 36 weeks, but was born with other problems (DS and a critical CHD). We spent 3 weeks in the NICU and then the pediatric cardiac unit. He had OHS at 11 weeks. It was a rough road, but the NEC was the scariest part. He was NPO for 7 days, which was especially fun since his heart didn't allow him to gain weight. Luckily it remained medical NEC and surgery was never needed. Just curious if any of y'all had a similar road?

Re: Anyone deal with NEC?

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    We never had NEC diagnosis. There were bloody stools that resulted in several tests for it, but all came back healthy and the cause was diagnosed as a dairy allergy. 
    I can understand what you mean about nightmares. though... There are things that seem to trigger a flood of NICU memories,, sounds, smells,, Christmas songs on the radio this year,, because my son was also born last December and that's all that was playing on the radio in the car on the way to visit the NICU and come home.
    I hope your little guy is doing well and thriving!

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    Sahara78 said:

    DD had suspected NEC. She ended up NPO for 17 days, as they waited to do an upper & lower GI before putting her back on milk. (They suspected she also had a stricture of some kind in her intestines, but nothing was found.) It was the worst part of her NICU stay; she ended up with TPN-induced cholestasis due to the lack of oral feeds. I had been pumping all her feeds, but she ended up on a specialized formula for the cholestasis, which caused terrible diarrhea and a diaper rash that caused us to visit a pediatric dermatologist after the NICU discharge.

    One of DD's NICU neighbors was a 36-weeker with NEC. I was friendly with her mom, who was kind of bitter that her DD struggled so much when she was born at what's considered a safe gestational age. Her DD recovered and went home before DD though.

    Hope your LO is doing well now! I was so worried DD would have ongoing digestive issues, but she has no problems now at 2.

    I'm sorry, I'm just now seeing these responses. My son's cardiologists were shocked he had NEC. He was technically at risk times two due to his prematurity and his heart defect. Yet, NEC is practically unheard of at such a late gestational age and with his particular heart defect. It just astounded them. Interestingly enough, a baby in the room next door also developed NEC at the same time. I have since learned that it tends to happen in groupings and no one knows why since it shouldn't be contagious. 

    And yes, my son is very healthy now! We still have frequent monitoring for his heart, but if more surgeries are needed, they won't be for a very long time. He is a tough little boy. :)
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    Oh boy did we! I have identical twin girls, born at 32 weeks. My twin A was in the NICU for 8 weeks (because of coming early) after 3 weeks home she became very ill so I rushed her to the ER and there, they found out she had NEC. I have her story posted on the Children's Hospital website she was at here it is

     On December 23, 2013, I was happy and excited to be moving from Chicago to Moline the next day, Christmas Eve, with my twin daughters, Daylor and Lake, to be closer to family. Just shy of three months old, the girls had been born premature at 32 weeks, and they both had spent an extended period of time in the Neonatal Intensive Care Unit (NICU) at Northwest Community Hospital.

    The previous night, Lake had woken up vomiting, and I was concerned because what she was bringing up didn’t look normal. The next morning, I took her to the emergency department at Northwest Community, a partner hospital of Ann & Robert H. Lurie Children’s Hospital of Chicago. Lake’s X-rays indicated she had an intestinal blockage, and she was immediately transported to Lurie Children’s NICU. Once we got there, a team of neonatologists met with me to discuss her care. Lake underwent further X-rays the next morning, and the scans confirmed the diagnosis. She was immediately prepared for surgery, and I only had time to say a quick goodbye to my baby before she was rushed to the operating room.

    As I sat in the waiting room that Christmas Eve, I couldn’t believe this was happening. Just two days before, Lake had been a healthy baby, and we were packing for our big move and getting ready to celebrate the holidays with family. 

    Although the procedure went well, Lake was diagnosed with necrotizing enterocolitis, a serious gastrointestinal disease that primarily affects premature infants. The disease destroys healthy bowel tissue and can be fatal if left untreated. The damaged part of Lake’s bowel was removed, and an ostomy was performed to help her intestines heal. 

    When I went to visit Lake’s room the next morning, Christmas Day, I found a team of doctors and nurses rushing out of it. Lake was on numerous intravenous medications to help keep her alive, but she was unable to eliminate all that fluid, causing my 5-pound baby to swell to 15 pounds. Her abdomen was so distended that it looked like it might explode, and her eyes were swollen tightly shut. Her lungs weren’t functioning properly, and she was placed on a ventilator to help her breathe. She was getting worse, fast.

    Two hours later, surgeon Catherine Hunter, MD, performed an exploratory procedure to determine if any dead intestinal tissue remained. Lake was so sick that Dr. Hunter and her team didn’t want to risk moving her, so they performed the second operation right in her room.

    Afterwards, Dr. Hunter told me that Lake’s remaining intestine looked healthy. She explained that Lake had a severe systemic inflammatory response and only had a slim chance of survival. There was nothing further they could do surgically. Lake needed time to heal, and we would just have to wait to see if she could fight off this horrible disease.

    It took about four weeks for Lake’s first signs of improvement. With each passing day her swelling lessened and her kidney function improved. After five weeks she was finally able to open her eyes again, and was eventually taken off the ventilator and weaned off her medications. I finally could relax and breathe a sigh of relief. Lake was going to make it.

    The first time I held her again, Lake smiled. I could not believe it. After all she had been through, she still smiled! At that moment it occurred to me that Lake will have no recollection of any of this. While I’m glad for that, someday I will tell her what she went through, how strong and brave she was and how she never gave up.

    On February 14, I received the best Valentine’s Day gift anyone could ever ask for: Lake was discharged from Lurie Children’s and came home, where she was reunited with her twin. It was bittersweet, because I loved everything about Lurie Children’s. The doctors and nurses were amazing, and I became very close to Lake's primary nurse, Hannah Herriges, RN. The NICU’s child life specialist and social worker were so helpful, and made sure I had everything I needed and that I was doing okay.

    Today, Lake is healthy, and is doing everything a 14-month-old should be doing. I am grateful this holiday season that I have two healthy daughters. I am grateful that Lake was given a second chance. I am thankful for the doctors and nurses at Lurie Children’s, who never gave up on her. A year ago, I was prepared for the worst, and thought Lake would never see another Christmas. We truly have a lot to celebrate this holiday season!

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