NEC - Necrotizing Enterocolitis

Now you know why they shortened it to NEC, geesh. So this is how joined the gut group of preemies. Dakota was about a week old when they notices his belly was starting to look like it had a big bruise on it. They started getting concerned that there might be some internal bleeding or something going on so they did all the tests, the ultra sound the x-ray and came up with nothing. Well the next night we got a call as soon as we got home saying that we needed to make a decisions. His bowels had ruptured. They did not know to what extent or how much damage had happened. They did know that he already doing very poorly. He was having a difficult time breathing and needing a lot of assistance. (He had three breathing machines at this point trying to get him enough oxygen) And he would need to be transferred to the children's hospital to have the surgery done by a specialist and they did not think that he would make the trip let alone the surgery. He could not be on the Nitric Oxide in he ambulance because they were not equipped for that. We had to make a decision of what we wanted to do.



That was the hardest moment of my life. How could I take him off the machines and let him die. What was the right answer what should we do? I don't want him to suffer. But I don't want him to die? We prayed and prayed seeking guidance. We decided to give him every opportunity to live. He was a fighter. He had already come thorough so many huddles. We did not want to give up on him.

So they loaded him up in the ambulance and we headed up to the hospital. When he first arrived they had to get him all set up and rather then having us in the way. They had us wait in the waiting room. Our parents all showed up for support. They finally let us all go in and see him before they took him down to surgery. There he was this little body sprawled out on this warming bed. This was the first time I saw him our of the incubator. He looked even tinnier. He was strapped down so that he would not grab his tubes and heavily sedated. I got to give him his very first kisses and told him how much I loved him. old him that it was up to him and if his little body could not take it anymore we would understand. But to always remember how much we love him. We walked with him down to surgery kissed him one more time and he was off. The doctors held our little boys life in their hands. I was terrified that would be the last time I got to kiss his warm little cheeks.

We headed up to the waiting room. It was late at night. it was going to be a long long night. The surgery took several hours. We sat in there and said prayers and cried. Finally we got a phone call. He did really good and they were bringing him back up to the NICU and the doctor would be in to see us. She came in and told us that there was minimal damage. They had to cut out the damaged bowel and that took about 6cm. He now had a ileostomy or colostomy bag that his bowel would drain into until it is healed and then they would reconstruct his bowel and put him back together. That would take several weeks. I think it was like 8 weeks before they did this. But he did really well. He is a little fighter. What a miracle our prayers were answered. He still had some fight in him and we were so grateful that we listened and gave him every opportunity and chance to survive and live.


What is NEC? Necrotizing enterocolitis, usually called NEC, is a condition where the intestines become infected and can begin to die. The disease usually affects premature babies, although term babies may also get NEC. NEC is a serious condition that may require surgery, and has a high morbidity and mortality rate.

How is it treated? In the early stages, treatments for NEC include stopping milk feedings to let the bowel rest, giving antibiotics to treat infection, and removing air from the stomach. The baby will receive frequent x-rays to watch the disease’s progress.

If medical treatment is not working or if the bowel perforates, surgery is required. A surgeon will remove any dead sections of bowel and other infected material. The bowel will either be reattached or will be diverted to the abdomen through a stoma. Medical treatments will continue until the disease is resolved.

This information is found here.

Only read what you are dealing with... ya right!

So when we got transferred to the Children Hospital's NICU in order for our to son to get NEC surgery done, they gave us a book and said only read the issues that you need to don't read the whole book. You will get overwhelmed. Well needless to say with everything he had to deal with we read almost the entire book. Plus I am an information research freak and read every book and informational website I could get my hands on. So this knowledge I have gained I feel is information that I can and need pass along to you. I already did the work so why not.

For this first part I want to talk about Medical Complications that your preemie might have to deal with. These are going to be the ones my son dealt with because I can tell you my personal experiences. I am going to site some of the best information that I found from some books and other places and that will be noted, but I want to share my experience with the non-medical jibber-jabber. The information that I provide in not in any way that to be used as a type of diagnosis. This information in solely my opinion and experience. The information that has been sited can be found in the book or other places that I have listed.

One of my favorite books is, Your Premature Baby, by Frank P. Manginello, M.D. and Theresa Foy DiDeronimo, M.ED. I love it. I am going to site it a lot. I highly recommend buying it or renting it from the library.

They start off their medical complications chapter by saying, "...word of caution: Do not read this chapter from beginning to end. Don't let yourself get caught up in the kind of negative thinking that seeks out all the worst possible scenarios and imposes them on the baby. Don't use the information in this chapter to make this time more difficult then it already its."

First off I want to talk about prematurity-related problems that are the most common.

Anemia - You might here them say your child is anemic. I personally think that his is the most common issue. This happens with full term babies as well. Their body's are adjusting. My son seemed to be anemic for the first 6 to 8 weeks of his new life. his levels would get low that they would have to transfuse him or in jibber-jabber give him packed red blood cells. This made me nervous at first. You hear all of those horror stories of blood. You don't know who the person is who donated it... I finally after the 3rd transfusion decided worrying about it was pointless. He needed and that was that. So that was a battle not log lived in my brain. This was one of the hard times though because when they are anemic they prick their teeny tinny heel constantly to check their blood levels. My son still has scars on his heels from this.

Is it his shunt?

This is a question Jake and I ask our selves every time Dakota gets sick. I will admit I am the overly paranoid one so I ask the question the most. But hey it freaks me out! So This past weekend Dakota started getting a pretty bad cough which lead to him having a harder time breathing. So we started by giving him his Albutral which end up coming right back up which as soon as that happens I freak out immediately and go straight to IT'S THE SHUNT! He then started acting really tired and just wanted to lay on the couch or have us hold him. Which is completely not normal for him. Even when he is getting sick with a cold he is usually still jumping around and at the very least playing with his motorcycle. He wanted to do none of this so then my mind goes oh no this must be a shunt issue! I have been given all the sign and symptoms of what to look for if he has a shunt malfunction. The most common sighs can be found here. So we take him to the hospital. They do what is called a shunt shunt series. This is some X-rays of the head, chest, and abdomen and a CT Scan of the brain. The results came back that everything looked great with his shunts. They were all intact his ventricles looked good. We even got a phone call from Dr. Kestle his Neurosurgeon and he said everything look good and he sees no problems. He ended up having a bronchial infection and asthma reaction. But that is another post.

So now do I question my mommy sense? Am I crazy to jump right in and assume it is his shunt? If you clicked on the like you would see the signs. They are the same as every other childhood illness he could get. What a pain! I mean this is his brain we are talking about.

This is a really good link to some hydrocephlus facts click here.