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12-16-2012 at 11:51 AM
cbranch89
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Anyone have experience with NEC?

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.


Trenton Elijah born three weeks early due to pre-e on April 14, 2011. Weighing 6lbs 6.3oz, 18 inches long. I love you baby boy!







Cameron Jacob (CJ) came early @ 25w4d on November 16, 2012 due to placenta abruption and incompetent cervix . Weighing 1lb 15.5oz, 14 inches long. Stay strong baby boy! Grow for mommy!

 
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12-16-2012 at 1:42 PM
Denesdia
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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.
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12-16-2012 at 1:50 PM
BostonKiss...
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T&Ps for you and CJ
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12-16-2012 at 2:20 PM
Sahara78
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I'm so sorry you're going through this with CJ! DD had suspected NEC. She had trouble with digestion from birth until her NICU release, with low motility and a lack of weight gain. When she had the NEC scare at ~34 weeks adjusted, her abdomen distended and she was in pain. Her x-rays (taken every 12 hours) showed dilation in her small intestine, but no free air in her abdomen. She was off milk/HMF and on IV antibiotics for two weeks. She also had the replogle (suction tube) for about 10 days. They had to put her back on O2, as her expanded intestines were compressing her lungs. When they restarted her on BM, it was only at 1 ml/hr on continuous feeds. But now she is doing great; she looks and acts like a normal 3 month old. Good luck and feel free to ask if you have any other questions. Also, don't look up NEC on Wikipedia; it has disturbing pictures.
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12-16-2012 at 3:46 PM
KatFCo
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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.

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12-17-2012 at 7:09 AM
jcsntms06
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You and CJ are in my thoughts and prayers.
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12-17-2012 at 1:13 PM
Usm123
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Thoughts and prayers and hopefully the dr calls you back soon! I always reminded myself that if it was REALLY terrible the dr would call very early. Is there a nurse practitioner or someone you could talk to sooner?

DS was born at 26 weeks 3 days and anytime he was put on CPAP he blew up like a ballon. They did multiple xrays a day sometimes and it would be air from the pressure. Keeping y'all in my prayers. It sounds like they are very diligent and are keeping a close eye on him.
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12-17-2012 at 8:18 PM
cbranch89
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cbranch89 is not online. Last active: 04-03-2013, 12:46 PMBronze

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.



Trenton Elijah born three weeks early due to pre-e on April 14, 2011. Weighing 6lbs 6.3oz, 18 inches long. I love you baby boy!







Cameron Jacob (CJ) came early @ 25w4d on November 16, 2012 due to placenta abruption and incompetent cervix . Weighing 1lb 15.5oz, 14 inches long. Stay strong baby boy! Grow for mommy!

 
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