Anyone have experience with NEC?

cbranch89

On Friday I called to check on CJ and was connected to the doctor. I was told they stopped his milk and did xrays and blood work because his abdomen was descended, they are thinking it's NEC. The xrays showed lots of gas and the bloodwork came back ok.  Yesterday, after I was told they put a tube down his throat throughout the night to suck some of the air out, they said he was looking good and still active. The nurses kept telling me his bloodwork changed like he was fighting an infection. Ok...Then the doctor made rounds last night and told me his bloodwork was fine and they planned to start him back on milk today after xrays. I called today and they said they took the suction tube out and put a draining tube in. I asked about the xray and she wouldn't tell me much and told me the doctor will call me. I am still waiting 2 hours later. I am going crazy worried about my baby. Does anyone have any experience? Input? I was told the other possibilities other than NEC could be excess air from the CPAP or maybe something in my milk.

Denesdia

I have been following you on your FB page for CJ.  I am sending prayers to you, mama, know that!  My DD arrived at 25w2d.  She had a PDA ligation at her 4 week actual birthday, and tanked after the procedure.  In a very short time, her belly distended, her labs went crazy, her vitals were all over the place, and we got the diagnosis of NEC.  We nearly lost her, and she went into emergency surgery.  She lost a large section of her large intestines and came out of surgery with an ostomy (bag).  By the time we came home, the ostomy had been reversed and she has never had residual problems related to her NEC.  Check out her picture in my siggie.  She is going to be 4 next month.  NEC falls on huge continuum, so please don't think that this is the only possible outcome.  Some little one's get antiobiotics, some use the drains, and some need surgery like my DD.  People reminded me that my DD was in the right place for each set of skilled eyes to catch the slightest deterioration.  You have a team watching for NEC, as well as many other conditions that CJ could be dealing with.  Stay strong mama, pump and freeze your milk, and save hope.  Keep us updated.

KatFCo

DD was born 23w6d and developed NEC at 4 days old. She first had a procedure (can't remember what it's called) that was mildly invasive, but failed, so at 5 days old, she had the ostomy surgery.

Because of her difficulty gaining weight, she had her ostomy bag for 12 weeks, and had the reversal surgery at almost 37 weeks gestation. Now, she's 5 1/2 and, other than her scar, there are no residual effects.

NEC can be scary, but it can also be taken care of with procedures other than surgery. Even if surgery is necessary, it's one doctors do a lot. Dealing with an ostomy bag can take some getting used to.

I'll be praying for you and your little one.

jcsntms06

You and CJ are in my thoughts and prayers.

cbranch89

Thanks for all the T&Ps ladies. When I went to the NICU last night the doctor who had him when he first came to the NICU was back. She was doing blood work when I walked in and said she was concerned because his CRPs were rising. She took me into the room where rounds are done and showed me all the blood work and xrays. When the blood work came back his CRPs were returning to normal and nothing else changed, however, something in his blood (can't remember the name of it) was elevated which normally is when you are having an allergic reaction. So based of this, she concluded, either he isn't tolerating or is allergic to my milk or his "gut is still immature". Today they started him back on Elecare again and plan to keep him on it. They told me to start weaning myself from the pump because I have 500+ oz stored so far and he may not be able to take any of it.

 

Again, thanks for everything ladies. This is so scary.