Tuesday, January 19, 2016

Calorie Packing 101 - Part 2 - Medical Barriers

Medical Barriers to eating

In this post I'm planning to cover oral aversions, reflux and delayed gastric emptying, but mostly, reflux.  We had a bad round of reflux with C.  R was a bit unsettled, but it was mostly due to the neosure we added to her breastmilk 3x per day.  For the most part, R was a happy spitter, C was rather grumpy about the whole thing (and still is).

Please note, I am not a doctor, these are my personal experiences.  Please speak with your baby's medical team about your baby's particular condition as all children have unique circumstances that must be taken into account.

This is part 2 of a 3 part series on calorie packing.

Oral Aversions

By the time C was 10 weeks old, we'd established a pretty strong oral aversion.  He HATED eating.  Everything about the process, the effort, the feelings, the reflux, all of it made him (and us) miserable.  Eating was a 1.5 hour process that we undertook every 3 hours around the clock.  Our goal was to get C to ten pounds so he could have open heart surgery.  

Each time we needed to feed C, we'd rock him to sleep to dream feed (see section below on dream feeding for more information) which took about 30 minutes, then feed him using a 45 ml bottle with the slowest preemie nipple so he could better control the flow.  We'd have a second 45 ml bottle standing by for after he finished the first.  If we used a larger bottle than 45 ml, he'd be overwhelmed and unable to finish the bottle, even with the very slow flow nipple.  It took us the entire half hour allotted to get 75-90 ml into him.  Then we held him upright for about 30 minutes.  Then, an hour and a half later, we'd start all over again.  You can see why feeding was no fun for anyone and why C decided that food was no fun.

Oral aversions can occur for a host of reasons.  Extended periods without food by mouth, problems with the Suck-Swallow-Breathe action pattern, a lack of facial sensory stimulation, and procedures that result in pain in the face/mouth area (such as intubation, NG tubes, OG tubes, etc) can all contribute to oral aversions.   The University of Colorado has a great article on preventing oral aversions  I used many of these techniques in an attempt to mitigate the problems we were seeing crop up.  You can read more here: https://grey.colorado.edu/shortgut/index.php/How_to_help_prevent_an_oral_aversion_from_developing  Sense memory and muscle memory are powerful forces.  You must be diligent and use creativity to overcome negative associations with eating and facial sensory interactions.

After surgery, we worked a lot with his oral aversion.  We contacted our local early intervention program and they sent out an occupational therapist who was a feeding specialist.  She helped us find different ways to decrease the negative oral associations C had with eating and being around his mouth in general.  

We found vibrating teethers to be incredibly helpful.  C wouldn't use any type of cold teether, so this was the only relief he had while teething. It also gave great oral feedback and helped desensitize his mouth.

The baby fingertip toothbrush and training toothbrush set were also great ways to increase positive associations.  I especially liked the training toothbrush set because the guard kept him from choking himself and he was able to use it himself, giving him the control without risking negative outcomes. 

We're left with some lingering consequences to C's early eating experiences. To this day, he won't eat anything with a puree consistency, he won't drink anything but water, and he won't ingest anything that is freezing or close to it in temperature. His strong need to be in control of his feeding meant that we went straight to baby led weaning.  He still uses food as a means of control and has a pretty limited set of foods he'll eat at any given time. 

Dream Feeding 

Our best strategy for feeding C was dream feeding.  Dream feeding is when you feed baby while they are in a relaxed, mostly asleep state.  They still actively root for the bottle and actively suck, but their eyes are closed, they are relaxed and appear to be fast asleep.  Never force a bottle into the baby's mouth.  Make sure they accept the bottle themselves.  You don't want them to get a mouth full of milk and aspirate it because they are unprepared.  

Given C's rapid breathing, dream feeding became the only safe way he could eat.  While sleeping, his respiratory rate dropped enough that he was able to successfully eat about 75 ml per feeding (his goal was 90 ml).  

Here is an article with more information on dream feeding.

Delayed Gastric Emptying  (DGE)

Because cardiac defects tend to make the GI tract slow down and become less efficient, we had to deal with delayed gastric emptying.  This compounded our eating issues as C legitimately wasn't hungry most of the time when he was due to eat again according to the schedule. Bethanechol became our best friend.  It was one of the few medications C was eager to take, we knew it made him feel better and so did he.  If you are faced with DGE Bethanechol worked pretty well for us.  I'd be hesitant to try the other option out there Reglan, it has long term effects that are pretty scary.  


Along with DGE, reflux is practically a given with cardiac kids.  We do our best to manage it and mitigate the symptoms, but it is pretty miserable for everyone involved.  We made some handy environmental modifications that I wanted to share, as well as some meds that really made a difference.  The best purchase we made in the battle against reflux (and nasal congestion for that matter) has been our bed riser set.  I bought a set that could lift a bed either 3, 5 or 8 inches.  We used 1/2 the set for the crib, the other 1/2 for the pack and play.  They have proven to be invaluable in making both of our kids more comfortable when sleeping.

Additionally, after feeding our little refluxers, we were careful to always hold them upright for at least 30 minutes so that a good portion of the meal had digested and there was less sloshing around in there to make them miserable.

I learned a lot about H2 Blockers and Proton Pump Inhibitors while working through C's reflux. I had a number of concerns about using Proton Pump Inhibitors, as did my pediatrician and our GI doc.  So we stuck with H2 blockers like zantac to control C's reflux.  The trick with h2 blockers is that they are VERY quickly outgrown.  You should be ready to adjust the dose every week or 2 as baby gains weight if you want your H2 blocker to remain effective.

Back when C had reflux, I found a group called the Reflux Rebels.  If you are having issues with reflux, they are worth talking to.

In part 3, I will talk about calorie packing for bigger kids.  There is a whole world of options when you are calorie packing for a big kid!

Back to Part 1On to Part 3

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