Mystery Baby

[xfitrn]

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 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.

[rnsrgr8t]

I do not work in the NICU so this is just a shot in the dark but has this baby's upper airway been evaluated? Baby's have to breath through their noses, especially during feeds, could she have choanal atresia? If she has a narrowing or blockage in the nasal passages, could explain when she sounds so congested but you cannot suction anything?? I could be way off base but that was immediately what I thought of when I read your post in addition to some cardiac/reflux issue which you say has already been evaluated. Good Luck! Hope they can figure it out! Keep us updated!

[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!

[CT Pixie, BSN, RN]

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.

[prmenrs, RN]

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!

[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.

[xfitrn]

Great video! I will try this tomorrow (provided she is mine). I am seriously so excited by all this great input from Everyone!

[xfitrn]

oh and we do use chin and cheek with her all the time. Still no avail. ...sorry after thought reply....

[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.

[Bortaz, MSN, 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?

[NicuGal, MSN, RN]

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,

[Double-Helix, BSN, RN]

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.

[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!