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.
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