Mystery Baby - page 2

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... Read More

  1. by   xfitrn
    Thank you both for your posts. We have ruled out choanal atresia. The heart defect is interesting. I am working tomorrow and will likely have her so I will have to see if she had an echo. I am not sure if she has. I get so confused when I am in my off days as to which baby had which without my kardex in front of me. I want to say she has not. Do you think a four limb would be a place to start as nursing interventions? I could certainly knock one out on shift tomorrow. We usually do them prior to discharge. She does wear a pulse ox and has always had intermittent desats during feeds but I guess I attributed it to her inability to breathe airway related and had not thought heart. I will look into it more tomorrow provided she is part of my assignment and get back to you all. Thanks again for all your input and thoughts. I love this site!
  2. by   CT Pixie
    Quote from llg
    Another thought ... heart defect? ... one that "comes and goes" with exertion. When she is lying quietly, she is OK. But when she exerts herself, maybe a heart defect kicks in (e.g. ductus opens up, ASD or VSD comes into play, etc.). Heart failure could explain the "congestion" sounds with nothing being suctioned.

    You say she looks defeated. Well, an old saying goes that ... "if a newborn looks worried, he may have a heart defect to worry about." Newborns often look "worried" as they work hard to get enough oxygen. Maybe this kid's "defeated" look is a sign of mild hypoxia. Does she wear a pulse oxymeter while feeding?

    Just a thought to add to the list of rule outs.
    I was thinking the exact same thing. I don't work NICU but a heart defect came to mind immediately when i read your original post. I think it popped into my head because we just had a lecture on newborns with cardiac issues and desating w/feedings, congested sound and poor feeding were always the top s/s.
  3. by   prmenrs
    Beckman Bottle Feeding in Sidelying - YouTube I think this is a Haberman feeder which is a good one for kids w/feeding issues. Use some chin and cheek support if the suck is weak, or gets weaker as the feeding continues.

    Good thoughts!
  4. by   retiredlady
    I would look into cardiac problems or she might be more immature than you think and it just wears her out to suck. Some need more time than others and do get that limp limb look when feeding. I have seen some big 8 lb premies do that.
  5. by   xfitrn
    Great video! I will try this tomorrow (provided she is mine). I am seriously so excited by all this great input from Everyone!
  6. by   xfitrn
    oh and we do use chin and cheek with her all the time. Still no avail. ...sorry after thought reply....
  7. by   catlover314
    Have all inborn errors of metabolism been ruled out? Some states' metabolic testing doesn't catch the less common things that can create symptoms like you describe...though cardiac seems a more likely cause. I am also wondering about the benefit of trying to feed a kid to eat who is obviously signaling that eating is NOT ok, for whatever reason. All that time and energy may lead of a true oral aversion. I'm one of those older nurses who used to be proud that I could 'feed a rock', but I've learned that I may have been creating more problems by being so agressive. Food for thought, so to speak.
  8. by   Bortaz, RN
    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?
  9. by   NicuGal
    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,
  10. by   Double-Helix
    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.
  11. by   xfitrn
    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!
  12. by   xfitrn
    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!
  13. by   Jory
    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 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.