Do you think my 3 week old baby will make it?

I had my twin girls 3 weeks ago. I had them at 29 weeks, they were both doing fine untill I found out one of them had a disease called Necrotizing Entercolitis. Today she went in for surgery because her belly was so big. Well they had to remove 75% of her small bowel. The doctor also put in a jejunoustomy, its kind of like a colostomy. My question to everyone who knows anything about this. IS do you think my little girl will be alright? The doc said its possible that the bowel isnt enough and she could die in 6 months or so if its not enough nutrition. Also if you know of any web sites that can aid me in information on the small bowel thats left, or stories, about this please let me know. I am a wreck, and I know only one person can determine what will happen. I just need a little bit of information.

Your baby has the condition called Short bowel syndrome.

Alternative names:
Small intestine insufficiency

Definition

Short bowel syndrome is condition of food malabsorption related to disease or the surgical removal of a large portion of the small intestine.

Causes, incidence, and risk factors

When areas of the small intestine are removed by surgery, there may not be enough surface area left in the remaining bowel to absorb enough nutrients from food.

This condition is particularly likely to develop when one-half or more of the bowel is removed during surgery. Risk factors include diseases of the small intestine that may require surgical intervention, such as Crohn's disease. Necrotizing enterocolitis is a common cause of this syndrome in infants.

Symptoms

Pale, greasy stools
Particularly foul-smelling stools
Diarrhea
Edema
Weight loss
Fatigue
Signs and tests

Chem 20 (reveals signs of malabsorption)
CBC (reveals anemia)
Fecal fat test

Treatment

Treatment is aimed at relieving symptoms.

A high-calorie and low-residue diet supplying essential vitamins and minerals is necessary. A low-residue diet is easy to digest and absorb. Anemia is treated with vitamin B-12, folic acid, and increased dietary iron. Medications may be given to lengthen the time nutrients spend in the small intestine.

Parenteral nutrition (tube feeding through a vein or stomach tube) is often necessary if normal feeding is not delivering enough nutrients. Once the patient has stabilized, however, a return to normal eating may be tried.

Expectations (prognosis)

The condition may improve over time if it occurs as a result of surgery. Improvement of nutrient absorption and lengthening of the time the food spends in the intestine usually occurs with recovery from surgery.

Complications

Weight loss
Malnutrition
Weakened bones
Combined systems disease (a degeneration of the nervous system caused by not having enough vitamin B-12)
Gallstones
Bacterial overgrowth
Metabolic acidosis
Kidney stones

Calling your health care provider

Call for an appointment with your health care provider if symptoms suggestive of short bowel syndrome develop.

Here is a link for your future reference!
Hope it may help you!

I am sharing your pain and anxiety!
Good luck!

Congrats o the births of your babies!! I am sorry to hear that one is sick. I will keep your family in my prayers.
The best place to research medical info is www.webmd.com.
It's free to register, and you can ask doctors questions.
Hope all goes well, xxxx hugs to you and your family.

thats horrible
and if the doctor was professional. he wouldnt tell you your baby is gonna die.

My heart breaks for you and your situation. Sadly, I have no information to offer you, as I haven't heard of this disorder. I guess all I have to give are my thoughts and prayers, which are yours! Good luck!

I can't answer but I can say your baby will be in my prayers. I hope everything works out well.

I am so sorry to hear that you are going through this rough time. My sister is a labor and delivery nurse, who may know the answer to you question. She is working now, but I will check with her tomorrow. Re-post your question tomorrow or im me, so I can answer your question. In the meantime, know that God is watching over your daughter.

I will pray for you and your little one. I have 29 week twin boys (now 6). One had cranial bleeding and both were in the NICU for 5+ weeks. Sorry I cannot give you specific info but have faith. God has a plan. Love her for whatever time she is lent to you.

Ill be praying for your twins. (im a twin also and i know people that have lost there twins) i hope shell be alright i will pray for her. God wont let anything happen to her if you believe in him then everything will be alright have hope and be brave. IF something happens God has his own plan but that is IF anything happens i hope that it doesnt!

I wish you the best of luck!