Mystery Baby - page 3

by xfitrn

5,824 Views | 27 Comments

Hello All! I am writing to see if anyone has any idea or has seen a baby like the one we have now. She is 48 days IDM born 32 weeks gestation aga. She was all the norm initially and transferred to level 2 relatively quickly... Read More


  1. 0
    I, too, immediately thought "Cardiac issue", due to the limbs and the gurgling chest. Or maybe a tracheoesophageal fistula.

    Also, does she have an indwelling OGT for the feeds you have to gavage? Try moving it to the nose to be certain it's not interfering with her suck and tiring her out. Is she still showing signs of hunger when she stops eating, or is she just getting full and not wanting more?
  2. 1
    All of our IDM's have an echo on admission, I guess I assumed she had one. And with reflux you don't always get anything when you suction...they can get edema just from irritation and cause that noise. There is still the possibility of a fistula that is small and has a nice flap on it that just wasn't open when the studies were done,
    Jory likes this.
  3. 0
    Other than a cardiac issue-

    Have you rules out larygnomalacia? We have an (older) infant in our PICU at the moment who sounds very congested with no secretions when feeding and when battling any sort of infection. He also has a chromosome deletion/duplication (can't remember which) of chromosome 2, I believe. Other than poor general muscle tone he appears pretty normal outwardly. The poor muscle tone may have manifested later than the neonatal period, as this child is almost a year old.
  4. 6
    Hey All! Sorry it took me almost a week to get back! Time flies when you are scheduled to the hilt and short on staff! lol! So I went to work last saturday planning on the side lying feeding and changing her position. I got report and night shift said, "I fed her side lying and she's finishing all!" Now I am shaking my head wondering why it took us so long to try this or change her position! PT came and saw her - she finished over two ounces with her and during the day, Mom finished her first bottle EVER with her! Mom cried. I nearly cried. We high fived - it was pretty awesome. By Tuesday she was set to discharge. I discharged her which was pretty awesome too. I am still convinced, and the Neo's are too that there is something going on with this baby. I want to read up on laryngomalacia. It's just that feeling that something else is going on. I am thrilled that she went home to Mom and Dad though. So long as she is there, she can grow in love in her own home. If the time comes that something does develop - well that will be in time and until then she is home. I can't help but think that all the energy from all the folks on this board helped the solution come to light as well. There is a lot of good energy here. Thank you all again for your input!
  5. 2
    Oh and she had an NG. Our facility doesn't do OG's past the first few days if they can help it. She was still a very loud gurgle baby even on discharge but at least she could eat. I guess now we will probably never know. Probably the PICU RN's will be the ones to know down the road. Again...thanks to you all!
    Bortaz, RN and prmenrs like this.
  6. 1
    Quote from xfitrn
    I will keep working on it! She is seen daily by our PT. She has been doing baby feeding babies and doing what most speech do for preemies in our area for 25 years. She is angry as all get out and swears something else is wrong beyond normal IDM. She has been working with this baby since second week of life. I haven't tried side lying. I don't think anyone else has either. I am hoping to have her when I go back Saturday or Mon-Wed this week. I will keep the thread updated and let you know as it progresses. It's so dang bizarre! We get IDM babies all the time! (We are on the Mexico US border and have some of the highest rates of diabetes in the nation) but this one.....so strange. She's not even LGA. She's a little cute package of mystery.....
    Here is the kicker...speech therapists are not physical therapists and physical therapists are not speech therapists.

    Before anyone puts this baby though a very painful (and probably very needless surgery) she needs to be evaluated by the APPROPRIATE specialist...and that would be speech.

    To do anything less, is doing that baby a grave disservice.

    PS: I posted this before I saw your last post..but I'll leave it. The "side lying" option that worked? A speech therapist would have done that FIRST, before anything else. That is why your facility needs to get speech, not PT, to work with the babies...especially if it's Level III. I'm sitting her amazed that nobody tried that sooner.
    Bortaz, RN likes this.
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    We are level 3 and don't use speech, we use OT and PT for stuff like this. Speech is usually not used in NICU's, unless you have an old chronic. Our PT and OT specialize in NICU kids. So there is no injustice here per say.
    Last edit by NicuGal on Mar 14, '13
  8. 1
    No disrespect, but some areas of the country use Speech Therapists for oral-motor issues, and some use OTs. And, imho, an experienced neonatal RN can teach a newbie OT/whatever a LOT! We are colleagues, here, not competitors.
    Bortaz, RN likes this.


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