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Do I have any way to get my baby released from the NICU?

brachysirabrachysira member
in Preemies
My baby was born at 38 weeks, and it looked like he had a heart problem from an ultrasound so the NICU was standing by.  His heart is fine, but he would desat when taking full feeds so he was checked in.  He has been in the NICU for 10 days and the ENT says he has laryngomalacia and that it won't be better for a year or so, but told me he could go home with an oxygen monitor because if he desats, he goes right back up when you give him a feeding break.  The NICU doctor overseeing my baby's case will not let him go.  He says he has to do the feeds without desating, but that is seriously not expected for a year.  Plus, he says I need to be there 3x/day to breastfeed, which is nearly impossible for me since I am recovering from a c-section.  Now he says I need to check into the mother and baby room and prove I can breastfeed without desating for 24 hours, and that room isn't available until next week.  I don't think he will pass anyway, because he has a physiological problem that prevents him from being able to eat without desating occasionally.  I cannot jump through more hoops just to be told he needs to get better when no improvement is expected.  The NICU is filled far past capacity and no one ever cares for my baby because he is not actually sick.  He has terrible diaper rash, wore the same outfit for 4 days and wasn't given a bath, the other babies around him scream full time, and he has a portable monitor for another child who has no actual spot in the room about 6 inches from his head the blares constantly.  He is in a room with babies who have infectious diseases and cannot be held without gowns.  I don't know if I should call a lawyer or if that will even help.  I just don't see any end to this. 
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Re: Do I have any way to get my baby released from the NICU?

  • LucyRicardo3LucyRicardo3 member


    Usm123 said:
    Talk to the social worker, the charge nurse and the head of neonatology. If your child is not getting proper care they need to hear about it. How dr do you live from the hospital? Do you want to breast feed or are you interested in bottle feeding? I know that our hospital let some parents stay in patient rooms in the hospital wasn't full but the mother baby rooms were. Maybe something to ask about. He may need oxygen just when eating if they want him not to desat. My son also has laryngomalacia.

    yes. (and another laryngomalacia case here)

    We were prepared to have to bring my LO home on nasal cannula because he just couldn't seem to get over that milestone, and we'd already been in the nicu 10 weeks. The day before we were discharged he managed to make it through 24 hours without desats so we didn't have to go that route. But I have other NICU mom friends who did have to go home on O2 cannula.


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  • brachysirabrachysira member
    Thanks.  I guess I need to find out who the social worker is.  With our previous preemie, a social worker called us, but we have not heard from one this time.  I really like our nurses, so I do not really want to complain about them.  It's not really their fault that there are tons of sick babies and because our son is healthy, he takes a backseat to babies who actually need help.  

    We only live about 15 minutes from the hospital, but it is huge and it is about 10 minutes (and $3) to park in the huge garage, then a 20 minute walk (plus 2 slow, crowded elevators) to his room.  I am so physically exhausted when I get there...I'm sure it will improve as I heal, but spending an hour+ in transport each time he needs to eat is untenable.  Right now I breastfeed 2x/day and stay for about 5 hours, but it is all I can do.  They are always changing his feeding schedule because they are too busy so I never know what time they will say he needs to eat before I arrive.  We will breastfeed and bottle feed at home or do whatever is recommended exclusively if necessary.

    I will ask about other rooms, but I have been told before that our hospital is very rigid about this.  Moms who are from out of town stay at the Ronald McDonald House, but that is across the street and not a medical facility where he could be monitored.  

    They once mentioned sending him home on oxygen and we would be happy about that, but that is apparently no longer on the table.  He just has to get over it on his own.  

    We are considering asking for evaluation from another doctor and perhaps pleading the case that our HMO may not approve such a long stay (they probably will).  But my DH says maybe we should just play along because starting drama is not a good way to get him home faster.  I just don't know.  

    There are people there who never even visit, who reek of smoke, who just do not appear to be particularly parental...and their children go home.  It is not a rule in the NICU that you have to room in and prove you can breastfeed even if you plan to breastfeed.  When our 32 weeker came home she couldn't really bottle feed and she could not breastfeed at all.  It is not a rule that you have to attend 3 feedings/day.  He still desats, so I don't see what good it does to follow these rules anyway.  It just seems arbitrary and senseless.
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  • brachysirabrachysira member
    jennl7 said:
    My son has issues with this too.  He desats if he has regular breast milk.  However, if it's thickened or if he's given formula with the Dr Brown's bottles, he has no issues.  
    Oh interesting.  Our SLP wanted to give him thickened bottles but the NICU doctor said no, because he might aspirate, although he was not aspirating on the swallow study and does not cough.  He does have a Dr. Brown bottle with an ultrapreemie nipple.  He collapses it but does do better as far as desating.
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  • brachysirabrachysira member
    Well, a little progress.  The night nurses keep tube feeding DS because they don't know him and I am not there to discourage it.  They say he is sleepy.  One of the rules at the NICU is that you can't leave if you've been tube fed in 48 hours.  The day nurse today said that he was hungry all morning and she wanted him to feed on demand so he would a) stop screaming; b) not require a new NG tube, since today was his day for a new one; c) maybe be okay sleeping at night.  

    The room opened up tonight, so I am here.  Tomorrow it is booked, and the doctor now wants me to feed him for 48 hours, so I'm not sure how that will work.  He says he could come home Sunday if he is perfect, or later next week if he is not (meaning I need to pace him by watching him on the monitor).  Of course he is mostly fine, but desats once or so per feeding, which is not perfect.  But at least I think he'll be home in less than a week and we'll probably get to have a monitor...
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