Jack had his head ultrasound yesterday and he has no evidence of any brain bleed. They are going to repeat it on 12/31. I am so thrilled about this! Thanks for all the prayers!! They are working.
Tierney vistited Jack last night. She brought him more milk and she sent me some pictures. He is still on the ventilator. He was lying on his belly. He got the PICC line and it is in his leg.
He was weighed and his weight went down to 2 lbs 3 oz. He is going to start feeds today. The iv lipids and hyperalimentation he has been getting are only to try to maintain his weight. He will not gain weight from that. When they feed him they will put a few cc's of milk down his oral gastric (OG) tube. A few hours later they will aspirate from the tube to make sure it is digested. If it is they will continue with the feeds. If not, they will wait awhile. This is all the prevent necrotizing enterocolitis (NEC). NEC is a huge killer of preemies and staying away from this disease is Jack's next big hurdle to jump.
Question: What is Necrotizing Enterocolitis (NEC)?
Answer: 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. Necrotizing enterocolitis is a serious condition that may require surgery, and has a high morbidity and mortality rate.
What Happens With Necrotizing Enterocolitis?
The inner lining of the intestines contains millions of bacteria. Usually, these bacteria (called the normal flora) are harmless and are part of the digestive process. In NEC, though, the bacteria begin to attack the intestinal wall. If the disease is not treated promptly, the intestinal wall will weaken and may die. Eventually, a hole can form through the bowel wall (a perforation), spilling its contents into the abdominal cavity. Bowel perforation is a medical emergency that requires immediate surgery and has a high mortality rate.
What Causes Necrotizing Enterocolitis?
Prematurity is the biggest risk factor, because preemies are born with immature intestines. Beyond that, doctors aren’t exactly sure what causes NEC. They know that the vast majority of infants who get NEC have begun milk feedings, but they also know that delaying feedings does not reduce the incidence of the disorder. Reduced blood flow to the intestines may also play a factor in the development of necrotizing enterocolitis, and babies who have heart conditions such as a patent ductus arteriosis (PDA) are at higher risk for developing NEC.
Symptoms of Necrotizing Enterocolitis
In the early stages of NEC, the infection causes the movement of food and air through the intestines to slow down or stop. This causes the baby’s belly to look bloated or distended. After feedings, food will be left in the baby’s stomach as gastric residuals. Eventually, enough food and air becomes trapped in the intestines that bowel loops will be visible on the baby’s belly. The belly will become painful and discolored, and the baby may begin vomiting bile or having bile-tinged residuals. Blood may be present in the baby’s stools, and the baby may begin to be bloated all over and have less urine output. The baby may also have a hard time regulating his temperature and may begin to have spells of apnea or bradycardia. Eventually, the bowel will rupture, causing widespread infection and respiratory distress.
Treating Necrotizing Enterocolitis
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.
Outcomes of Necrotizing Enterocolitis
NEC is a serious disease, and about 25% of infants who recover from NEC will need treatment for long-term problems. Infants who are medically treated for NEC may have growth delays, trouble absorbing nutrients, and trouble with their livers and gall bladders. NEC also increases the risk of developmental delays.
Infants who have had surgery for NEC also show long-term effects from the disease. In addition to the effects of medical NEC, surgical patients may have severe absorption problems such as short bowel syndrome and have an increased risk of cerebral palsy and brain and eye problems.
Preventing Necrotizing Enterocolitis
Preventing premature birth is the best way to prevent necrotizing enterocolitis. If you are at risk for preterm birth, talk with your doctor about what you can do to lower your risk.
If preterm birth does occur, then feeding only breast milk can significantly lower the risk of NEC. Breast milk contains protective factors that encourage good intestinal development and can reduce the amount of harmful bacteria in the intestines. In one study, infants whose feedings contained at least 50% breast milk had a six-fold decrease in the incidence of NEC.
In addition to preventing preterm birth and feeding breast milk, giving steroids to the mother when premature birth is expected may reduce the risk of NEC. Also, supplementing breast milk and formula with different substances such as probiotics or immunoglobulins may help, although more research is needed.
Some Statistics About NEC
Over 90% of infants who develop necrotizing enterocolitis (NEC) are born preterm.
The incidence of NEC is between 5-10% of all very low birth weight infants (less than 1500 grams).
The mortality related to NEC in very low birth weight infants is between 20-30%
The mortality related to NEC in extremely preterm infants (less than 1000grams) is approximately 40-50%
Infants who weigh less than 1000 g at birth have the highest attack rates. This rate dramatically drops to 3.8 per 1000 live births for infants who weigh 1501-2500 g at birth.
Rates of NEC drop dramatically for infants born after 35-36 weeks' gestational weeks of age.
The average age of onset has been reported to be
20.2 days for babies born at less than 30 weeks' gestational age,
13.8 days for babies born at 31-33 weeks' gestational age, and
5.4 days for babies born after 34 weeks' gestation.
(Read more about Preemie Health Complications Statistics by preemiehelp.com)
Julianna had a small risk of NEC. She did not get it and did great with her feeds from the beginning. She was able to take her mik orally although they all said she would probablly not be able to do that. She proved them all wrong and took her 4cc's by bottle, digested it like a champ and demanded more a few hours later.
Jack has a much bigger risk but he has a greater chance of not getting it than he does of getting it. He will be at great risk for this until he is released from the NICU. The average age of onset of NEC for his gestational age is about 3 weeks.
So far Jack is doing great and I am thrilled with his progress.
Thanks for the encouragement, prayers and support!