HOneslty I have to say that it sounds like NEC. Yes we have experience with this as Michael was diagnosed with NEC. He was at a NICU near home, just 13 beds, and about 3 weeks into his life they were having issues with him digesting food, etc. They suspected NEC right away,called us at home at 12am, rushed him via amublance to another NICU in our state. I had no knowledge of NEC and honestly I'm glad I hadn't read about it or else I'd have been a wreck. Many babies die from this is the meds don't work, the surgery is very invasive. Luckily the antibiotics worked and after about 7-10 days they resumed feeding breas milk, he was transfered back to NICU at home and then 2 weeks later came home. He's not had any digestion issues at all...and he is now 22 mos. She will be fine..he had no replapses.

Hi Audrey :)- Kayleigh is doing ok, she is on antibiotics still, until Sunday...and the surgeons took her drain out. They're still measuring her belly everyday and watching her closely, but so far her belly is nice and soft and her belly measurements are normal. She is at a Children's Hospital now, so yea she could have surgery right away if the doctors decide to do it. She is almost 2 pounds now. Once the antibiotics are done they are talking about trying breastmilk again...I really want her to start feeding but I'm so afraid she will get NEC again =/

Bumping up, how is Kayleigh? Hope you're past that risk safely!

Rebecca needed surgery as she had free air immediately. HOWEVER: she was 37 weeks and a good size, about 2.8 kg. Her NEC also was probably due to feedings. It's thought that feedings colonize the intestine with its first "foreign" bacteria and some babies have more of a reaction to it than others. My daughter, as it turned out, was highly allergic to milk protein and I was too sick for her to receive breast milk right away. She also had critically low oxygen levels at birth, which impaired the blood flow to her intestine.

NEC is scary, no question. Is your baby in a place where she could have immediate surgery if it is needed? Obviously, I hope it's just a matter of antibiotics and time. It's a good sign that she is still only on CPAP and there is no free air. I will keep Kayleigh in my thoughts.

Rebecca had a colectomy when she was two days old, and was in the NICU for a total of 8 long weeks (as well as contracting meningitis). She is a healthy normal teenager now, though, and I will hope for the same outcome, preferably MINUS the major surgery, for your little one!

Yes they look for free air on the xrays. No free air is good. If she is not sick enough to be back on the vent that is a good sign too at least that is what they told me. I am surprised they did not tell you immediately. They sat me down and told me right away with Randall but the hospital he was in he would been transferred if he had needed surgery so they wanted to prepare me if they needed to transfer right away. Will pray she gets better quickly!

Forgot to update...well apparently is is NEC...I'm really upset they didn't tell me this right away. =/ Anyway, she might be getting surgery, but they aren't sure yet. Said they xrays are not getting worse, but there has also been little change. She has not been acting sick the past few days...they actually moved her back to the cpap a couple days ago. So, not I'm just waiting to see what's going to happen =/

Anyone who has experienced something similar...how do the doctors know if the intestine has healed and also how can they tell if the intestine has any dead areas?? Are they able to see it on the xrays?

I would think they would tell you immediately if it were NEC. They did me with Randall. Usually NEC occurs once they are up to full feeds and your little one had just began feedings right? I think Kara is right that you can have a perforation without NEC but I would ask the doctors and nurses to be sure and set your mind at ease. Are they doing tons of x-rays? They did loads of x-rays when Randall had it to make sure it was not getting worse though they might need to do that with a perforation too. Randall had to have bowel rest and antibiotics for 10 days but thankfully his healed without surgery. Best of luck to you I know how hard all this is (((hugs)). I will be praying for you and Kayleigh.

I agree. I would ask about NEC- but that is a very serious issue and I can't imagine they would not talk with you about it if they suspected it. I would make sure you ask- By the way I love her name Kayleigh- and I am sure she is in everyone's on the forum's prayers. I am not an overly religious person but my grandmother is and lights candles at the church every week- I asked her to light one for your daughter- figured it can't hurt to have too many people praying for her.

She was born 26 weeks and will be 2 weeks tomorrow...only 1lb 8oz (weight as of today...birth weight was 1lb 4oz)
I will be going back up to the hospital later today and will ask. I would hope that they would have told me, I asked what was going on with her and no one I spoke to mentioned NEC, I just learned about it today after looking up intestine perforation. If you have a minute, please pray for Kayleigh.

I'm not a doctor, but I think you can have a perforation without having NEC. NEC is the death of intestina tissue. NEC is serious and I think they would have told you if it was NEC. I would just put in a call to the NICU and ask the nurses or doctor if there is any concern about NEC. We found that if you ask very specific questions, you will get more information and better answers.

How old is she and what is her current weight?