Oral (etc...) Aversion

[Ratchet]

So my 27-weeker now 38-weeker is still not waking up to eat, despite being very healthy otherwise.  BUT... today we are trying letting her be ad lib, so long as she eats at least every 5 hours (any amount), knowing she will take far less than her daily goal and that she will probably lose weight today but hopefully some hunger will kick in, and she has been gaining tremendous amounts of weight up to this point so she can handle it... she will swallow about an ounce at a feeding thus far but not becuase she is hungry or wants it, but more just because her swallow reflex works even though she's basically sleeping.  (We are doing pumped breastmilk with slo-flo nipple-- breastfeeding goes no where, but in the long run I have confidence it will work out, once she's awake and home).

If that plan doesn't work they will let her come home with NG tube feedings so long as she doesn't alarm, keeps her temp up in the pram, etc.

There is the suspicion she may have an oral aversion, although when she's awake (VERY rare) she is a good eater and the problem has seemed to more be sleepiness.  Granted, we may be causing an oral aversion by feeding her when she's not vigorously asking for it, but she never vigorously asks for it... she rarely 'cues' and doesn't have much of a rooting reflex...

But it has made me wonder, not just about oral aversion but about the concept of "shutting down" in general.  When I think of all the tortuous things done to her... intubated for a week, CPAP for 5 weeks (until she got a very bloody nose, and it must have been hurting for a long time prior to that...), hi-flow, weekly eye exams (so sad to watch!), only able to be held for 3 hours per day for many weeks, just the pain of having to breath air when your lungs are immature and sick, oral-gastric and naso-gastric tubes, blood draws, PICC line, IVs...

Maybe this is why she is so constantly 'sleepy'.  Probably not, but in what other ways would you "shut down" after having so much done to you?  And humans are resiliant but also it is hard to imagine that you can erase that when your brain forming so many connections...

so, we do everything we can to be comforting along the way, but I am curious to hear if other NICU moms (or moms of children with chronic medical needs) have any thoughts on this?

[AnnieA]

My daughter spent her first week in the NICU, second week in the PICU recovering from open heart surgery and her third week on the regular peds floor enduring IVs, NG tubes and all manner of minor tortures from nurses being trained. I definitely witnessed times when DD would "shut down" and fall asleep after having been held down for IV access, BP or temp checks or going through PT. It was just a really stressful time for her. And now that I've gotten to know her (she's almost 14 weeks ) I realize she was probably super stimulated too through some of that and needed to escape. She's a highly sensitive baby (pretty sure that's just her personality because she was sensitive when she was in the womb too) and I know now that all the beeping, lights, touching, handling, etc was probably too much for her. She has to go back in the hospital soon for another open heart surgery and I will be better prepared to help her disengage in a more healthy manner rather than just shutting down.

With the oral aversions, do you have access to a speech/path at the hospital? Since DD was intubated multiple times, we had to do a lot of work with speech/path to get her to the point where she could take 60 ml per feed. That was the benchmark we had to get to so she could go home without an NG tube in. They also had me waking her every 3 hrs to feed and a lot of the middle of the night feeds were a waste because she was just too tired. When we got home, I let her set her own schedule for a few days and she got in the habit of a four hour sleep chunk but then eating every 2 hrs otherwise. Of course now she's 14 weeks and we were up every 3 hrs to feed last night!

[Ratchet]

Your daughter has been through a lot.  I'm sorry to hear you will be going through more in the future, but glad to hear you have had some time to get to know each other at home!

We have seen the SLP/ OT "feeding team" here.  They recommended only feeding her when she was really awake (otherwise doing gavage); breastfeeding when possible as the flow is slower; slow-flow nipple.  However they were unable to really do much more than that because she isn't waking up to do really much of any feedings.  Breastfeeding is a non-starter.  Last night the nurse switched to a haberman feeder (which is used often for babies with cleft palate or down syndrome- not that she has either but it is a bottle that feeds with compression, not suction so it is essentially a no-flow nipple I guess).  She is perhaps more coordinated but still nippling less than half the volume, less than half the time.  They tried her every 4 hours, then every 5, with varying volumes, and even with 48 hrs of taking no more than an ounc every 5 hours she stilln ever woke up hungry. 

So I'm actually curious to hear more about how SLP/ OT can be helpful.  They are sort of disengaged from our case becuase feeding is no longer something we are working on much.  She will be coming home with an NG. I'm sure it would be helpful in the future but by then we will be out of here, not having easy access.

Thanks 

[AnnieA]

Well for us, speech/path was helpful because during her feeds, she would choke, gag, fall asleep too soon and desat while feeding. So the speech/path showed me different positions to feed her in for instance laying on her side rather than cradling her and we also switched nipples a couple of times. This stopped her from choking and gagging and soon she stopped desatting while feeding.

[APToddlerMama]

I'm sorry your family is going through so much OP.  I think you might be on to something with your DD shutting down.  It is hard to know how much all of that affects a baby, and my guess is that it is really difficult for her.  This is going to sound really hokey, but my son had a brief NICU stay and a friend of mine suggested we see a craniosacral therapist with him.  I think she did Myofascial Release as well.  They use very light pressure to work with the soft tissue structures around the brain and spinal cord supposedly allowing the brain to process and release "restrictions."  Hopefully I'm explaining it accurately.  Anyhow, maybe this would help her a little.  It is considered body work and impacts the brain and nervous system. We went with my son for three separate rounds.  The first was after his NICU stay and I think we saw this woman maybe three or four times and did notice definite improvement with DS's latch and suck/swallow/breathe.  The second round we tried for reflux and colic without much success and then we did a third round later on for his sensory integration issues and also saw some nice improvement. 

I never would have really believed it worked except that out of total desperation and someone buying me gift certificates to a place that did craniosacral, I went for a few sessions for some medical issues and actually noticed huge improvements. 

Like I said, kind of out there, but it is supposedly helpful for little ones who have had a difficult start.  I don't blame her for shutting down :(.  Good luck to you.  I can't imagine how hard it must be for your family.  I'm trying to avoid round two in the NICU with DS2 after going into preterm labor at 29 weeks.  I hope things come together for you and her quickly.