NEC strikes again

  1. [evil]NEC[/evil] 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 gut perfed and they had to remove his entire colon, yes the whole thing, half of the the ileum, and oh yes, by the way, his spleen was bleeding uncontrolably so we took that too.

    This little guy, who is 'my' baby came to us in DIC over 50 days ago at 28weeks gest, fought his way through it, had some issues with extubation and feeding, 'normal' head, as in no IVH or PVL, (but how normal can it really be after coding and some bleeding from his DIC?) but finally looked like he was ready to extubate for good, 'recovered' from pneumatosis(sp?) (14day gut rest and antibiotics, completely asymptomatic and a clear xray from very early on) and was finally beginning to advance on his feeds. He truly looked like he had finally turned the corner and was heading in the right direction! He needed laser eye surgery, and I thought, good at least we can do it before we stress him with extubation, but i guess he didn't agree.

    He crased for me today. I'll admit, I didn't think he was going to make it out of the OR, but he did, and I just called to check on him and he's still with us, but he's virtually maxed on Dopa, 100%FiO2, PRBCs, the list goes on. Are we really helping him? I was fine all day while taking care of him, everyone at work was great about stopping by to see how i was doing and if i needed any help, I was even ok on the way home, but after checking on him it really sunk in. I am so split becase if he does make it, will he have any quality of life? He's fought through so much already, I want to give him every chance. But at the same time, is this his way of saying thanks for trying, but i'm tired. I can't decide which would be 'better', (not the word i'm looking for, but the best i can find after being at work for over 14 hours and knowing I have to be there again in a few hours) going in this morning and hearing that we did all we could and he passed away overnight, or see him still there fighting. my heart breaks either way.

    I love my job and can't think of doing anything else, but at this moment, I wish our job truly was how many people view it, holding tiny babies and feeding them all day long.

    I'm sorry for the rambling, I just needed to share this with some people that truly understand.
  2. Visit wee one rn profile page

    About wee one rn

    Joined: Jun '06; Posts: 41; Likes: 8
    from US
    Specialty: NICU, CVICU

    22 Comments

  3. by   Gompers
    NEC just sucks. It really does. I think it's the single most frightening thing that can happen to a baby in the NICU. It's just so random, you know? When it happens to a micropreemie on tropic feeds, we all say, "Yep, knew that was going to happen" and then usually the worst of it is that the baby gets adhesions or obstructions and needs surgery later on, but that most of the gut healed and will be fine. On the other hand, when it happens to a grower-feeder who is doing pretty well, it's absolutely devastating. Entire guts lost to NEC in the matter of hours. WHY does it hit those babies so much harder than micropreemies with zillions of other problems?!?! The worst cases of NEC I've seen have almost always come from the step-down room and a baby that wasn't even on IV fluids or oxygen at the time.

    It's hard to know what to root for in really bad cases. Sometimes you think you're just prolonging their agony by keeping them alive, only for them to die of liver failure less than a year later. Other times you get hopeful that the right mix of formula and medications might buy this baby time until the gut has time to grow a bit and that they'll be okay. Don't even get me started on the fantasy of bowel and liver transplants - our surgeons have been "promising" them for years to babies who lost EVERYTHING to NEC, and we have yet to see ONE BABY get the surgery. It's just a pipe dream. I know they do it some places, but I'l believe it when I see it with my own eyes. We sometimes wish that if they took more than 50% of the bowel, that they'd just tell the parents it was incompatible with life and to remove support from the baby. But they rarely do it. And no parent is going to ASK to take the baby off the vent, or even get a DNR order. We have to be the ones to suggest those things, and we almost never do. It makes me so sad because these kids suffer so much.

    I don't think I'm helping you very much, just commiserating. I understand what you're going through and we're all here for you if you want to vent. Let us know how the baby is doing, okay?

    {{{{{{ HUGS }}}}}]
  4. by   prmenrs
    I wish that "they" could figure NEC out! Develop some sort of medication we could give the little tykes right off the bat to prevent it. Like surfactant or Indocin.

    It is just the ultimate slap in the face when you've been caring for a baby for weeks, getting family ready to leave the unit, and whammo--NEC. Just makes you want to go somewhere and bang your head against a wall for a while. A totally helpless feeling.

    We've all been there. It's the ultimate worst thing in NICU.

    Maybe not the most comforting post I've ever written, but I sure can empathize. I'm sorry you're going thru it.
  5. by   sanctuary
    Blessings and deep respect to you, and all of you that care for the smallest and sickest of any. I could never do it.(Stick me in a room full of folks c Schizophrenia, and I'm happy) I honor that you invest so much of yourselves in your work, even knowing that a full and normal life is not an option. I agree that there should be an easier way to decide when the baby has suffered enough. I would hope that medical ethics would step in at some point and decide that just because we can do something doesn't mean thet we should.
  6. by   Gompers
    Quote from prmenrs
    It is just the ultimate slap in the face when you've been caring for a baby for weeks, getting family ready to leave the unit, and whammo--NEC. Just makes you want to go somewhere and bang your head against a wall for a while. A totally helpless feeling.

    We've all been there. It's the ultimate worst thing in NICU.

    Maybe not the most comforting post I've ever written, but I sure can empathize. I'm sorry you're going thru it.

    That's the thing with NEC. There are really no words of comfort. It just plain old, flat out, stinks. All we can do is support each other, the babies, and their families. When are they going to find a prevention or cure for it?!
  7. by   prmenrs
    "....even knowing that a full and normal life is not an option."

    We do this just so that a full and normal life IS indeed an option. A good save in NICU is the future--there are former premies who are members of this Board, striving to be nurses (or already are), they marry, have children and grandchildren of their own. A good save in NICU is a lifetime. And a good reason to keep doing it.

    That doesn't mean that we don't have some tough decisions to make sometimes, and those little guys can't break your heart on a regular basis.

    Put me in a room full of schizo's, and I'd probably become one!!! Catatonic, to boot. But I am very glad that there are nurses that like caring for those schizophrenics!
  8. by   dawngloves
    It's so hard to pull them out of the dark, just to see them circle the drain once more. Just don't "coulda, shoulda, woulda" yourself. OK? You gave him the best care you could.
  9. by   wee one rn
    thank you all, it really does just suck. He continued to slowly slip away today despite all the drips and osscillator(sp?). Mom came back, she lives over an hour away and has 2 other little ones at home; so he was put back on a conventional vent and she held for several hours without really knowing that he is heading for a ride on the train to heaven until an attending had what i think is the heart and sense to tell her that it was time to consider removing support (she had already consented to 'no compressions' if he coded but held the hope like any parent that the millions of drips were helping and he could get through this) the kicker is that his BP really did start to get a little better, as in maps of mid-20s instead of high teens, while she was holding which seemed to give a little more hope, I'll admit I had a flicker of it myself, but his eyes were open, not blinking, and after a while it seems to me that despite the bp and hr the meds provided, he had already slipped away. I said my goodbyes and needed to leave or I never would have, I'm going to check later to see if mom was able to remove support, regardless, I think that he won't be there in the morning when I have to go back for another day of work.

    once again, thank you all for your commiseration, this really just sucks, I've seen NEC and dealt with it, but he was really 'my' baby and the thing that keeps popping into my head is he's the first that "I've" lost, but he won't be the last. I love my job, but i really wish it wasn't this hard.
  10. by   mom23RN
    As a mom who has been on both sides of the fence, NEC does suck. It's such a fast, deadly, confusing thing. My son died from NEC when he was 10 weeks old. He was a term baby who was 8 lbs 5 oz at birth. He was born with a CHD and they figure it had something to do with his open heart surgery. The hardest part was that we had watched him fight so hard for 9 weeks in the hospital and we finally got to take him home. One week later he died in our local ER when he bowel perfed.

    I hate NEC. Like someone said, I hope they can figure out what does it and why it affects some babies and not others. It's such a horrible thing to have to experinece.

    I give all of you who work in the NICU a lot of credit. After being there (I was a nurse during all of this) it was very difficult and yet very inspiring. You guys truly are amazing to do what you do every day.

    Sending (((((((((((((((((((((((((((hugs))))))))))))))))))) ))))). I hope "your" little guy has found peace and ultimate healing.
  11. by   prmenrs
    :icon_hug: To you, mom23RN,also. I hope that reading this has not disstressed you further, and that it maybe helps you to know how NEC affects us, too. I'm so sorry for your loss. :icon_hug:
  12. by   Gompers
    Quote from mom23RN
    As a mom who has been on both sides of the fence, NEC does suck. It's such a fast, deadly, confusing thing. My son died from NEC when he was 10 weeks old. He was a term baby who was 8 lbs 5 oz at birth. He was born with a CHD and they figure it had something to do with his open heart surgery. The hardest part was that we had watched him fight so hard for 9 weeks in the hospital and we finally got to take him home. One week later he died in our local ER when he bowel perfed.

    (((( HUGS ))))

    I'm so sorry for your loss. Like prmenrs said, NEC affects us too and it is one of the most frustrating things we encounter in the NICU. It just breaks our hearts when a baby is diagnosed with it. The news rushes through the unit like wildfire and within the hour everyone knows. A doctor once told me that he has so much respect for NEC because it is just such a powerful disease process, it makes him feel so humbled. It hurts us so much when a baby has come so far and then BOOM he or she gets NEC. I am so sorry about your son.

    :icon_hug:
  13. by   prmenrs
    It sure doesn't make me feel humbled. Furious and devastated is more like it!
  14. by   Gompers
    Quote from prmenrs
    It sure doesn't make me feel humbled. Furious and devastated is more like it!
    Well you know how hard it is for a doc to admit defeat. Did I mention this guy was a surgeon? That might explain my amazement!

    I agree with you - furious and devastated doesn't even begin to cover it. I, too, want to bang my head against the wall when it happens. It just makes me so mad, I can't even explain. :angryfire

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