Mystery BabyRegister Today!
- by xfitrn Feb 28Hello 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 for feeding where she has stalled. She cannot finish a bottle and sounds very congested while feeding. While we say congested - think sounds like she needs to be deep suctioned A LOT! We suction from every angle and get nothing. This has been for since she was about 2 weeks old. We have done CT, MRI, Barium Swallow and nothing. They all show normal. This child cannot finish a bottle though! Our PT works with her daily. You can see defeat in her eyes when she is unable to finish. I also find it odd that when she feeds, she leaves both her arms limp. She does not flex her arms. She is a mystery but at this point it seems the docs are just waiting for mom and dad to give up and let a g-tube be placed. I am still bothered. It seems to me that she has something wrong but no one knows. Has anyone seen anything like this? Does anyone have any ideas? Thanks in advance.
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- Feb 28 by boardchicHow is her general tone and weight gain? Is she small?
- Feb 28 by llgI assume they have done the tests (e.g. barium swallow, etc.) to rule out things like a TE Fistula? ... or acalasia or some other swallowing anomoloy? If her upper extremities are always limp, there might be some nerve problem that is making it difficult for her to feed.
If your neonatologists can't get a good diagnosis ... what is she still doing in a level 2 nursing? Is it the level 2 in a hospital that also has level 3/4 care available? She might need the sub-specialty diagnostic services of a level 3 center.
- She is about 3200 grams right now. She keeps gaining because she gets the volume via the ng. She has decent tone. The arms thing is just strange but she has appropriate head control. Her legs are strong considering where she has been her whole life.
- We are a level 3 NICU. It seems like they are distracted by babies with more immediate problems such as micros. She appears normal from outward appearances. I just wanted to see if anyone had seen a baby that sounded like this one and had an idea. We will keep pushing our practitioners to see if we can get them to look at her again. Thanks for your input.
- Feb 28 by TiffyRNIt's quite possible there is something more wrong with this infant than just the usual poor feeding seen with a lot of IDM kids. Have you ever spent much time perusing through Smith's book (recognizable patterns of human malformation)? I was amazed by how many different and varied problems have IDM as one of the main risk factors. IDM seems to be incredibly teratogenic. So, I agree with you that there is very likely something else going on with your mystery baby.
I also know that with a lot of poor feeders, if no definite cause can be found with the standard tests you listed, the neos will often give the infant until their due date (or maybe a week or two past) before they push the G-button.
I guess my take home point is that your neos are not likely to take a second look until this child's due date (which should be very soon).
Another odd thing to throw in. . .I used to watch the show (Discovery or TLC, something like that) Mystery Diagnosis. One recurring theme (or maybe I just tuned into this) was kids who had mystery diagnoses who had an initial hospitalization for poor feeding, then they finally figure out what's wrong with the child several years later when more obvious features of the disorder manifest.
One of our previous techs had a niece in our unit that was IDM, poor feeder. We also remember the child had a couple of unusual features but nothing definite. She finally ate just enough to go home. 18 months later as she progressively missed developmental milestones they finally diagnosed a partial duplication of some chromosome. It was pretty rare so much so that the MDs couldn't give the parents a long-term outcome prediction.
- Tiffy thanks so much for your reply! Yeah - the g-tube conversation has been broached and is imminent next week I believe. I guess as the level 2 RN caring for these babies and their parents, it kills me to see the heart break in Mom's face and the defeat in this baby's eyes. You can actually see her give up about 15 minutes into every feed but not before she tries her hardest. It's been sooooo heart breaking! You are right about the Neo's coming to see (or not rather). Her roommate was a baby with some influential parents last week and she also is a bit of a feeding mystery. They made a stink and suddenly our head neo came down to see the baby. Now that baby has all sorts of diagnostics and extra treatment. I was hoping that this baby would also get his attention as we (the bedside) keep bringing it up but apparently this baby just won't get his attention. That also kills me. *sigh* I feel so bad for this baby and her family. I guess it's just a "Time will tell". Thank you all so much for your replies. I guess I was hoping ... I don't know what I was hoping but it's still nice to have a place to come where we all know what it feels like. I don't post often (ok more like never) but read on here a lot. This site is fantastic. Oh well we shall see. I suspect your right Tiffy, that this is something that will manifest as she gets older. Until then we will do the best we can to help her now. *sigh* Thanks again to all of you.
- Feb 28 by NicuGalI have seen a lot of IDM kids like this. You have to remember that she is only 34 weeks corrected and IDM kids act so immature to start with. Our unit wouldn't even consider a GT until the baby was corrected at least FT. Some of these kids can take weeks and weeks to get it together. Is she on reflux meds? The can get that gurgly noise from reflux. My best bet is that she just isn't ready yet. They can get that crazy tone thing going on too. IDM kids are just a mess!
But we also had a kid we all thought was TEF, was scoped ect and it wasn't until the baby was like 44 weeks that they saw the flap while being scoped again.
- She has been tested for reflux. She hasn't been on meds but we have suctioned her when she is gurgly every way from Sunday. We get nothing. Nothing comes back at all - forwards backwards, bulb syringe or deep. Nasal or oral....it's very odd. It's like the gurgle is trapped somewhere in her that we can't reach. ...also part of the mystery...
- Feb 28 by prmenrsI'd suggest a pediatric OT or Speech Therapist who is an oromotor specialist try working w/the baby. Might try feeding her side-lying or the OT/Speech might have an idea.
Be the squeaky wheel till the docs pay attn to her!