What is Necrotizing Enterocolitis (NEC)? Babies surviving after NEC... Share your story with us and others who have had similar experiences... Latest Research - An exclusive human milk diet can reduce Necrotizing Enterocolitis


27-12-14(7:38:24)

May 7th, 2016 by Mohamed

its called dayz you need arma 2 and ootiaerpn arrowhead to play it then all you have to do is download the dayz mod that is free and you can play it or wait a couple months and dayz will be made into a seperate real game soon

09-01-15(16:24:20)

May 7th, 2016 by Darla

My daughter was born 11/9/14 at 23 weeks 6 days, weight 1lb 1oz, 11in. Of course we knew there weren’t too high of hopes, but I still had my hope she’d make it through. Day after day she made small strides. She made it through the pda ligation surgery and was finally off the oscillator vent, no more IVs, no more picc line, and just her feeding & breathing tube remained. 01/04/15-I had changed her diaper, taken her temp, she smiled, wiggled, and full of life. She was doing so wonderful, even at 35% oxygen support and vent settings down, showing she was breathing more on her own. Then, without any symptoms, warning signs or anything at all, she developed NEC during the night. My story is as follows:

Monday, January 5, 2015
It was 5am when I awoke to that fateful phone call from the NICU. First the nurse asked if she was speaking to me, then handed over the phone to Doctor Wiener. She informed me the baby had taken a turn for the worse in the middle of the night, had necrotizing enterocolitis, bloody stools, and was rapidly deteriorating. She felt it would be best to come in immediately, given her condition. Immediately after I got off the phone, a knot was present in my stomach, which grew larger and larger as I moved.
I then told my husband and we got ourselves dressed, as my step-son ate breakfast and got ready for the first day of school back from the two week winter break. I then updated Facebook to let them know what was happening with her and called my parents to let them know what was going on. We then left for the hospital at 5:20am, hit every single red light along the thirty minute drive, and arrived there at approximately 5:45am.
I got my security badge from security, had to wait for the elevator to be released to go up to the 2nd floor, and then I made my walk from the elevators to the NICU entrance. I waited at least 1 minute (which seemed like an eternity at the time) for someone to answer the phone to let me in. I quickly scrubbed in and went over to Alazne’s bed side.
There she was, extremely swollen stomach, IV in her head and her legs, ventilator at on 100%, heart rate not even 100 bpm, and appeared to be lifeless. The night nurse, Nina (who she’s had since her birth), looked distraught, blood shot eyes, and frantic going from one thing to the next. She asked me if the doctor told me to come in and said she’d find her for me. I just talked and talked to Alazne, telling her she’d be okay and we’d get through this. Letting her know I was there and I would be right by her side.
Dr. Wiener came up and told me the news, which was pretty much the same over the phone, but with the details of: her intestines were just too big for her body, her veins weren’t working to get and IV in, her body kept shutting down, acid in her liver, surgery on standby for her intestines and bowels if the x-ray showed any air that could be drained, and she was really concerned that she wasn’t going to pull through this. Moments later my husband arrived, she informed him of what was going on as I stood by her bed side, staring at all she was going through.
He then sat down as we watched the doctor and nurses attend to her. They were trying to get blood from her heel to draw a blood gas as her oxygen was now dropping. The doctor came by and said her chest wasn’t moving at all and started performing chest compressions. That’s when my husband went downstairs to be with my step-son. Moments after that the red light was switched on and twenty people surrounded her. Doctors, nurses, and respiratory therapists were on standby. Chest compressions continued as manual air given through a bag, while syringes were being filled to give her more medicine for her heart. They moved her to the oscillator vent and turned it up high to get her breathing again. Finally, after five minutes, she was stabilized, for now.
As the nurse kept coming up to me to inform me what they were doing and why they were doing it, I just stared from the chair, helplessly, crying at what she was going through. Just yesterday she was doing so very well. She was wiggling, making faces, almost smiled again, changed her diaper, took her temperature, felt her warm skin on my hand, and she was well on her way to coming home. It’d been 1 month and 2 days since her pda ligation surgery, 11 days since she was no longer on the oscillator, and 8 days since I last got to hold her. It was then that Dr. Wiener came to talk to me again, letting me know she was stabilized and they’d keep me informed of what was going on.
I then took my keys to my husband so he could take my step-son to school. While they were going, I was super sick to my stomach, rushed to the bathroom where I quickly threw up. I sat back down for maybe another 5 to 10 minutes when the NICU called, stating they needed me up at her bedside again. I showed the security guard my badge, entered the elevator, quickly got out, and ran over to the entrance. One of the nurses who was party of the response team let me in and I went over to her room. Dr. Konana talked to me about what was going on and what they were doing, saying how sorry she was, and if I wanted to just hold her and let her pass or let them keep trying; I only sobbed hysterically. She wanted to know if my husband would be back and if I could call him. I called and called, but no answer. I said I wanted them to keep trying as I wanted my baby girl more than anything. Dr. Wiener then came over after a few minutes saying that she thinks it was futile as they aren’t getting a heartbeat back. I decided I just wanted to hold her in my arms one last time.
They gave her to me, wrapped up in the hospital blanket, she opened her eyes, looking at me, her body bruised from all they were trying to do to save her. She was then baptized by the doctor and she checked her heartbeat moments later, but she only had 7 beats a minute. They were keeping her on the oscillator just long enough to let my husband come see her and hold her if he wanted. Right then, my husband called and I said what was going on. It was now 7:59am when he arrived. 8:01am, she checked her heart and she had passed. She was no longer suffering. She had fought hard to live in her 57 days, very hard.
All the monitors and machines were turned off as I just held onto her, looking at her sweet face and gently closed her eyes. Nurse after nurse and doctor after doctor came by to tell me how sorry they were for my loss, giving me hugs. While waiting for the chaplain, they took the breathing tube and enteral tube out of her throat. For the first time since birth, I finally saw her face. She had such a cute little mouth, nose, and cheeks. We were then asked if we wanted an autopsy performed and couldn’t answer at the time. My husband left for some air and the chaplain arrived. Finally, my husband arrived and we were taken to a private room to be with our baby girl.
In the room we said a few prayers, talked, and I just held onto my baby girl. I finally called my dad back to let him know what had happened and let him know to tell my mom. I decided I wanted to have her cleaned up and pictures taken. I went back to her room, for the last time, waiting for the nurse to come back. Since we decided not to have an autopsy, all tubes were taken out of her body. She was already decomposing, as it was now 11am, bruised body, stiff limbs, and that sweet face. I cleaned her up, put her diaper on for the last time, and helped put her in the gown they used for her final pictures.
We took her Christmas bear she received from volunteers, her blankets that covered her isolette, and were going to come back for the memory box with the photos. For the last time, I walked away from her bed, knowing I wouldn’t be coming back the next morning to come visit her and tell her how much I love her.
I miss her dearly. Her brother was born at 26 weeks 5 days (now 9 Years old), another brother 22 weeks (lived for 1 hour 26 mins), and a miscarriage 3/6/12. She was supposed to be my good luck charm, the one who made it, and my only daughter. Her name means miracle and she truly was my miracle for those 57 days of life. I, of course, cannot understand how she literally changed from one minute to the next without warning. Nor can I understand that there was nothing showing up on the x-ray to perform any surgery; no air in the bowels, nothing, just enlarged intestines.
I am glad I came across this site to see I am not alone. It hurts me to read the stories of loss, but makes me hopeful that more could be done in the future.

27-04-15(19:51:09)

May 7th, 2016 by annoyamous

My niece was born at 34 weeks. She weighes about 6lbs now. She has had bloody stools, ( they found another bloddy diaper today) my sister is completely devastated. Its her first child, a cute little girl. They at first thought it was a milk allergy, so they didn’t feed her for a week, on two different occasions. From.what I’m reading it sounds like she has NEC. And a part of me wants to just scream at the the doctors to hurry up, do surgery and fix the issue. I don’t think its an allergy. My siter isn’t really good about expressing her emotions, that’s fine. I’m currently pregnant with my second, and would feel totally completely guilty if my baby was born healthy and something happened to hers! So if y’all could say a little prayer for my little niece please! I’d appreciate it!!! Thank you so much. Its scary as all get out to read your stories, and they are also hopeful. God bless all of you! And thank you for being such inspirations, you and all your Angels in heaven!

26-04-15(17:31:38)

May 7th, 2016 by Christal Tillman

May 1, 2013 was the scariest day of my life. I woke up got ready for school and started my day like any other day. But this day was different I was five and half months pregnant and I notice once I went to the bathroom that I was lightly bleeding. I call my doctor and the receptionist tells me to come in for a checkup after school, so I go. Once I get to the doctor’s office I notice the bleeding has gotten heavier. The doctor checks me and tells me I’m in labor. No signs, no warning, no contractions, no nothing, the baby is coming now! I cry immediately, it’s too early, it’s not time yet; but he’s coming. Laying in labor and delivery the doctor comes in calmly and says “I’m going to do whatever I can to stop the labor but if I cannot I am going to have to take him but if he is over one pound he have a high chance to make it. The nurse is going to come in and give you three shots to cease the labor and then I will be back in an hour to see if it is working. Just calm down everything will be ok.” First shot. Second shot. Third shot. Silence. Thirty minute later, seven centimeters dilated. “The baby is laying on his back right above your cervix. The doctor is going to have to move him and take him before your water break and the umbilical cord chokes him,” the nurse says to me. The doctor comes in to give me another shot to help speed up the development of his lungs. More tears. His father looks at me, I look at him, with hope in our hearts that our first born is ok. Because it is an emergency cesarean delivery I had to face it all by myself. I’m starting to hyperventilate, I can’t calm down, and I can’t hear anything but the thoughts running through my mind. My hearing is back. “Lay down and breath,” is all I can’t hear but I’m stuck, I can’t move I can’t breathe. My heart is racing, I feel it jumping through my chest. Calm down, calm down, calm down. I open my eyes and I feel sharp pains, I want to get up but it hurts to move. Where is my baby? Is he ok? Nobody is there to me hear me. Where is my baby? Crying and screaming till the doctor comes in. “He’s ok and if we can get him stable fast enough you will be able to see him before we life flight him to a NICU more suitable to help him.” I tell myself over and over again, he’s ok. Jayse De ’Shon Luna born May 1, 2013, at 6:37 pm weighing one pound, eight ounces, twelve and a half inches long. I see him, he is so tiny, he has no health problems, he just need to grow.
Two emotional days after being in the hospital I finally get to go be with my baby. I get to the NICU and all the doctors come in and they tell me so much information I think my head is going to explode. Everything is ok, he just needs to grow, I repeat this to myself till it gets stuck in my head. I want to hold my baby but I can’t. Crying looking at him, he looks up at me and it makes me smile. A moment of greatness during a stressful situation. I can’t sleep. I can’t miss a moment. I need to make sure he is ok. May 10, 2013, its mother’s day! I finally get to hold my baby! I’m so nervous, he is so tiny. One pound twelve ounces, he’s growing! Every things is going to be ok. Jayse is growing, he has no problems. May 23, 2013, I decide to go home to get everything set up for Jayse, that way I do not have to do it when I bring him home. I get back to the NICU the morning of May 24, and the nurse looks at me and I know something is wrong. He is frowning, he looks like he is in pain. I can’t stand it, I burst into tear. “What happen? What’s wrong with him? What did you do?” I ask the nurse, she is trying to explain to me what is going on but I can’t listen. He was fine when I left. I checked on him last night he was ok. I’m looking at him and his stomach is so swollen it looks as if it is going to pop. Why is this happening? Why did I leave? The Neonatologist comes in and tells me they need to do surgery, but he have no problems they checked him. No muscle problems, no organ problems, he just needs to grow. The doctor tells me that Jayse has air in his liver and it was a possibility that some of his intestines could be dead. “If parts of it is dead we will cut it out and he will be ok but if all of his intestines are dead then there is nothing we can do. This is called NEC. They did explain that this is common and can happen to premature babies?” I nod yes, but there is hope and I have to believe that he is going to be ok. Two hours later, Jayse primary nurse Anne comes in and I see tears in her eyes and in my heart I knew what was happening. But it couldn’t be. She grabs my hands and I shake my head no. I couldn’t accept the words I knew she was going to tell me. She kneels down in front of me still saying nothing till the doctor speaks and it’s like a bullet hitting me directly in my heart. “I’m sorry his intestines are completely dead there is nothing else we can do.” “Are you sure?” Is all I can say. This can’t be happening. This can’t be real.
We decide that we want him to just go on his own so we don’t take him off the breathing machine because eventually it’s not going to work anyway. The doctor let us in to see him and he just looks sleep. I watch the monitor and his heart rate reads seventy-four. He is slipping away. My baby is dying and there is nothing that I can do about it. I can’t help him, I can’t stop it, and there is truly nothing I can do. He’s lifeless, he’s breath is faint, he’s getting cold, there is nothing I can do. I held my baby in my arms and watched as his life disappeared. Jayse died in my arms and there was nothing I could do about it. I did everything I was supposed to do. I walked, I ate healthy, and I never did drugs or alcohol. I wanted this baby, we planned to have a family and it was all getting taken away. Jayse died May 25, 2013 at 9:37 am, weight two pounds, fourteen and a half inches long. Twenty-five days is all I got with my baby and in my head the words that I can never erase, the words that broke my heart forever are, “there is nothing else we can do.” I can’t get them out of my head. I hear them, I see them, I feel them.

23-12-15(2:48:03)

May 7th, 2016 by Danielle

I was pregnant with my first child, after one of my appointments I was sent to the hospital to do a 24 hour protein test. The next morning nurses come running in they could not find my son’s heart beat and needless to say I had an emergency c-section and my son was 11 weeks early. He was doing really well the first week, we would be at the hospital everyday for hours, since I was on leave I would go up twice a day. I remember it like it was yesterday, I went up to the hospital that morning, they had told me he had an infection and was on antibiotics, I stayed a few hours then went home. When my husband came home from work we went up again. The first thing I noticed was his tummy was huge, it had not looked like it did when I left. I was lucky, we had nurses that listened. The next day the took him in for an exploratory surgey, they originally did not want to do it because he still had the infection. Fortunately they did because the doctors had to do the full surgey right then and there. They had told me when they picked up the first portion of his intestine it fell apart right in their hands. Mark was in the hospital for 5 months growing and recovering. Along with other issues he survied, I remember one of the doctors telling us as we were walking out of the NICU he was a miracle baby. Mark is now 9 years old and doing very well. We call his scar his belly’s smiley face and battle scar, I remind him I have a matching scart too. It was and probably will be the hardest thing we have ever had to go through, my heart goes out to all the parents that have or will go though this. My advice would be to give as much love as you can, hold your child as much as you can, parents have a healing touch to their children. Stay aware of anything that doesn’t look right and tell a nurse if you are worried about something. Belive it or not I think they rely on us to notice any differences in our babies.