NEC strikes again - page 2

NEC I'm having a rough night and just needed to get this out, sorry if some of it's incoherent.. how can things go from finally looking up to suddenly crashing and finding out that your baby's... Read More

  1. by   RebeccaJeanRN
    I do believe there is really hope for NEC in the near future. From my reading, it has some parallels to premature lung, where they use surfactant. Let me explain my optimism: In the colon of a young preemie, the enterocytes are not functional yet because the colon wasn't supposed to be functional yet. So all the scraping and removal of mucus and cells as fecal matter moves through, is not able to be replaced adequately and hence a vulnerability to ulceration, bacterial invasion and perforation. I am betting that the next thing they will discover is something to rush the maturity of the enterocytes, just like they do with surfactant in the lungs. Anyway, that's my hope and prayer. It can't happen soon enough! In the meantime, my heart goes out to everyone who has lost a babe to NEC and to my fellow nurses who work with these tender age kids.
  2. by   Gompers
    Quote from RebeccaOne
    I do believe there is really hope for NEC in the near future. From my reading, it has some parallels to premature lung, where they use surfactant. Let me explain my optimism: In the colon of a young preemie, the enterocytes are not functional yet because the colon wasn't supposed to be functional yet. So all the scraping and removal of mucus and cells as fecal matter moves through, is not able to be replaced adequately and hence a vulnerability to ulceration, bacterial invasion and perforation. I am betting that the next thing they will discover is something to rush the maturity of the enterocytes, just like they do with surfactant in the lungs. Anyway, that's my hope and prayer. It can't happen soon enough! In the meantime, my heart goes out to everyone who has lost a babe to NEC and to my fellow nurses who work with these tender age kids.
    You bring up some very interesting points! I agree!

    We see two kinds of NEC, it seems...

    One is with smaller preemies, usually just starting out on feedings. I can really see this type of NEC being due to vulnerability of the GI tract, like you said. Whether it's from a spontaneous perforation, ulceration, or just plain old infection, this seems to be the milder form of NEC. Usually note discolored bellies with bruising and DIC - and they only perf about half the time. Even when they do, they don't seem to lose as much gut when they get big enough to have an exploritory lap - they usually seem to just remove the area where the drains were placed.

    THEN you have the really really bad NEC. This is the type you see that affects babies like the son of mom23RN. It's the older babies who are on full feedings, sometimes premature but often 34+ weeks at the time and sometimes term or post-term. This is the devastating NEC where the baby is big enough to go to surgery ASAP, which is good because they usually have massive perforations, and more often than not, the gut is almost completely devastated. It is so strange how sometimes a 500 gram preemie can survive NEC and do okay, but a 3 kilo term baby can die from it overnight. I believe this type of NEC is more ischemia-related, which would probably explain the difference between this type and the more mild type that hits young preemies.

    This isn't to say that there was never a micropreemie who had devastating NEC - of course we see that, too. But again, it seems to be the babies who have had really bad RDS so maybe ischemia had a place in their development of NEC as well, rather than just the vulnerability of their premature GI tracts.

    I hope I'm making sense here!
  3. by   RebeccaJeanRN
    Thanks for the added information & the wisdom of your actual experience...I haven't had this experience with an older baby on full feeding because I'm still new at NICU. Can't imagine the heartache & will continue to pray that they find something that prevents NEC from happening!
  4. by   wee one rn
    Just to let you all know, he passed away night before last in his mothers arms. Thanks for all of your understanding through this. Mom23RN- hugs to you

    Gompers, I completely agree with what you said, it seems to be related to an immature gut and/or some ischemia.

    random fyi- one of the docs at my hospital is starting some research into NEC to see if there is a way to 'predict' that it might be starting so that we have a little more warning before we start to see our clinical signs of distention, lethargy, temp instability, etc. I'm interested to see if he can find anything.
  5. by   BabyRN2Be
    Quote from wee one rn
    random fyi- one of the docs at my hospital is starting some research into NEC to see if there is a way to 'predict' that it might be starting so that we have a little more warning before we start to see our clinical signs of distention, lethargy, temp instability, etc. I'm interested to see if he can find anything.
    I'm very sorry that "your" baby passed away. You have my thoughts as I know that this is very heartbreaking for your as well.

    The research you mentioned is very interesting. I do hope that they can make some advances in the areas of NEC. If something comes of the research, wow, it really would help cut down the mortality rate in the NICU.
  6. by   Gompers
    I'm so sorry about the baby. At least his mother was there with him when he passed.

    NEC plain old sucks. Nothing else to say.
  7. by   Nathan1097
    I was a preemie who had NEC. I was born at 31 weeks and am now 34 1/2-ish. I had surgery to remove 1/2 my gut. Been having recent issues (or rather, more often issues recently) of what they said is ileitis. Feels to me like partial blockage. Its horrible. And nobody seems to be able to diganose it. Been to the ER twice- once this past June. Hospitalized for 5 days so they could run tests. Of course, everything came back normal, except there was signs of infection. Gastro dr's seem to just read my chart 5 minutes before they walk in the room- if that!

    Anybody know anything about follow-ups? I have read that scar tissue can create issues like this- twisted bowel, or partial blockages. And I have plenty of that. I just can't keep doing this. They are getting more frequent- more quickly! I basically have a stomach ache the gets worse for about 4 or 5 hours until I go into shock- fast pulse, sudden profuse sweating, rapid breathing, low bp.... Taken at the ER one time it was 133 and 60/40. I then throw up for about six hours until I can finally pass out into sleep. Last time, I was FINALLY given phenegren and morphine in my IV. But if I did that every time this happened, I'd be in detox in no time! I've had an MRI, two CT scans (one more detailed), xrays, and a colonoscopy. And that's just since June! Blood tests, stool tests.... All turn out fine, except to say I have "ileitis". Last time this happened was Tuesday (its Friday) and it was the same, except my belly was VERY distended on one side only. The dr. on call that evening said I didn't have to go to the ER unless I was bleeding! Its takes me days to be able to eat again, and at that, I stay away from meat as much as I can.

    I'm just complaining. NEC isn't a fun thing! I worry that internal scar tissue is progressing or something is going on again with my gut, even though all the tests say my gut is open at the site of reattachment. Maybe they need to do an upper GI test to get to the small intestine? I was reading the thread on really early micropreemies and then saw the NEC threat and had to post.
  8. by   Jolie
    Quote from Nathan1097
    I was a preemie who had NEC. I was born at 31 weeks and am now 34 1/2-ish. I had surgery to remove 1/2 my gut. Been having recent issues (or rather, more often issues recently) of what they said is ileitis. Feels to me like partial blockage. Its horrible. And nobody seems to be able to diganose it. Been to the ER twice- once this past June. Hospitalized for 5 days so they could run tests. Of course, everything came back normal, except there was signs of infection. Gastro dr's seem to just read my chart 5 minutes before they walk in the room- if that!

    Anybody know anything about follow-ups? I have read that scar tissue can create issues like this- twisted bowel, or partial blockages. And I have plenty of that. I just can't keep doing this. They are getting more frequent- more quickly! I basically have a stomach ache the gets worse for about 4 or 5 hours until I go into shock- fast pulse, sudden profuse sweating, rapid breathing, low bp.... Taken at the ER one time it was 133 and 60/40. I then throw up for about six hours until I can finally pass out into sleep. Last time, I was FINALLY given phenegren and morphine in my IV. But if I did that every time this happened, I'd be in detox in no time! I've had an MRI, two CT scans (one more detailed), xrays, and a colonoscopy. And that's just since June! Blood tests, stool tests.... All turn out fine, except to say I have "ileitis". Last time this happened was Tuesday (its Friday) and it was the same, except my belly was VERY distended on one side only. The dr. on call that evening said I didn't have to go to the ER unless I was bleeding! Its takes me days to be able to eat again, and at that, I stay away from meat as much as I can.

    I'm just complaining. NEC isn't a fun thing! I worry that internal scar tissue is progressing or something is going on again with my gut, even though all the tests say my gut is open at the site of reattachment. Maybe they need to do an upper GI test to get to the small intestine? I was reading the thread on really early micropreemies and then saw the NEC threat and had to post.

    So sorry to hear of your gi problems. I can only imagine just how debilitating this must be, especially for a young, otherwise healthy person.

    We can't give medical advice here, but I would strongly recommend that you ask for a referral to a PEDIATRIC GI specialist, despite your age. I have had some contact with adult "former preemies" whose medical conditions weren't adequately treated by adult specialists, primarily because the specialists were so unfamiliar with the disease processes and their long-term effects, especially when the patients became adults. I worked at a Children's hospital where a fair number of patients over the age of 18 came for treatment of conditions that had originated in their childhood.

    Good luck and good health to you!
  9. by   lovemyjob
    Quote from Nathan1097
    I was a preemie who had NEC. I was born at 31 weeks and am now 34 1/2-ish. I had surgery to remove 1/2 my gut. Been having recent issues (or rather, more often issues recently) of what they said is ileitis. Feels to me like partial blockage. Its horrible. And nobody seems to be able to diganose it. Been to the ER twice- once this past June. Hospitalized for 5 days so they could run tests. Of course, everything came back normal, except there was signs of infection. Gastro dr's seem to just read my chart 5 minutes before they walk in the room- if that!

    Anybody know anything about follow-ups? I have read that scar tissue can create issues like this- twisted bowel, or partial blockages. And I have plenty of that. I just can't keep doing this. They are getting more frequent- more quickly! I basically have a stomach ache the gets worse for about 4 or 5 hours until I go into shock- fast pulse, sudden profuse sweating, rapid breathing, low bp.... Taken at the ER one time it was 133 and 60/40. I then throw up for about six hours until I can finally pass out into sleep. Last time, I was FINALLY given phenegren and morphine in my IV. But if I did that every time this happened, I'd be in detox in no time! I've had an MRI, two CT scans (one more detailed), xrays, and a colonoscopy. And that's just since June! Blood tests, stool tests.... All turn out fine, except to say I have "ileitis". Last time this happened was Tuesday (its Friday) and it was the same, except my belly was VERY distended on one side only. The dr. on call that evening said I didn't have to go to the ER unless I was bleeding! Its takes me days to be able to eat again, and at that, I stay away from meat as much as I can.

    I'm just complaining. NEC isn't a fun thing! I worry that internal scar tissue is progressing or something is going on again with my gut, even though all the tests say my gut is open at the site of reattachment. Maybe they need to do an upper GI test to get to the small intestine? I was reading the thread on really early micropreemies and then saw the NEC threat and had to post.

    I really appreciate your post. I have no clue what happens to our babies when they leave us or how their life is affected. I always picture our babies who loose so much gut as having a short life (liver failure) and never geting off tpn. Your post has given me hope for our babies' future.

    I am sorry you are having a difficult time. It seems like going into shock (and knowing it) would be terrifying. Good luck finding someone to treat you adequately.
  10. by   NICU_3_RN
    Quote from Jolie
    So sorry to hear of your gi problems. I can only imagine just how debilitating this must be, especially for a young, otherwise healthy person.

    We can't give medical advice here, but I would strongly recommend that you ask for a referral to a PEDIATRIC GI specialist, despite your age. I have had some contact with adult "former preemies" whose medical conditions weren't adequately treated by adult specialists, primarily because the specialists were so unfamiliar with the disease processes and their long-term effects, especially when the patients became adults. I worked at a Children's hospital where a fair number of patients over the age of 18 came for treatment of conditions that had originated in their childhood.

    Good luck and good health to you!
    I second this notion... i used to work at the childrens hospital in philadelphia - and like this nurse says - sometimes "adult" doctors just can't cut it. NEC is a baby problem - and sometimes you need a baby doctor to solve it, regardless of your age.

    I remember hearing about a 68 year old man, who had a congenital heart defect that was never repaired as a child, because it was missed. Now that it was interfering with his golf game, he decided to have it taken care of. He had to come to CHOP because he couldn't find an adult cardio familiar with this type of defect.

    Give it a try and best of luck to you.

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