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

Calorie Packing 101 - Part 1 - Babies

R only needed fortified feeding for the first 6-7 months of her life while C has been classified as FTT for most of his life.  He didn't learn what hunger felt like as a child, he doesn't have a good relationship with his body, and he doesn't acknowledge his own hunger cues without meds. We've tried a lot of calorie packing strategies.  I won't say we've tried them all, but we've tried a lot.  I'm going to try and summarize what I've learned in terms of Calorie Packing, Medical support for eating, Delayed Gastric Emptying (DGE) and reflux.

This is part 1 of a 3 part series on calorie packing.

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.

Calorie Packing For Babies 

When your has a genetic or physical condition that causes them to use extra calories, is starting from a low or extremely low birth weight or simply doesn't gain weight, the medical community jumps feet first into fortification.  If you are breast feeding, some doctors will tell you to immediately quit breast feeding and begin feeding formula.  Generally speaking, that is a big, drastic step to take initially (if you are in a drastic situation, then drastic steps are generally warranted, otherwise, it is worth some quick investigation).  

The first thing you should know about infant weight gain is that your fastest weight gain occurs in the first 4 months and you should be averaging at least 20-30 grams per day.  If that isn't happening, there are steps you can take.  If your baby is close to that goal, say they are only gaining 15 grams per day in the first few weeks and you are breastfeeding, you should get a good lactation consultant and troubleshoot your breast feeding situation.  Make sure you've got good transfer, that baby doesn't have a tongue tie and that you are feeding on demand.  There are times, early on in breastfeeding, where it seems like baby will never stop eating... keep feeding them.  

For those babies with medical conditions, you may be told not to let baby eat more than 30 minutes because it burns too many calories.  While this may be true if the choice is between eating and sleeping, it is not true when the choice is between eating and screaming.  If baby is going to scream when you are not feeding them, keep the boob in their mouth (or a bottle, or a pacifier, whatever). you'll be at a net gain overall because eating requires less energy than screaming.  

Standard formula by default, is 20 calories per ounce, breast milk is generally expected to average about that per ounce as well.  Though that isn't always true.  My breast milk tends to run about 22-23 calories per ounce (I know this because I'm a milk donor and they check the calories when processing the milk).  If you've determined your baby is not gaining weight on breast milk or formula, the doctor may start talking about calorie packing.  First, if you are breastfeeding, it might be worth asking for a creamocrit to determine the total calorie content of your milk.  If not, you can assume the typical 20 calories per ounce and fortify from there.  You may want to make sure your doctor is consulting with a nutritionist when formulating your baby's caloric needs.  If breastfeeding, try to ensure they allow you to continue to put baby to breast at least once or twice a day for a full feeding, plus comfort feedings as long as they don't interfere with your daily intake goals.  Note: Keeping your breast emptier will generally increase the fattiness of your milk, so pumping more often is recommended when you are worried about nutrition.

For both formula and breast milk, fortification entails adding additional formula to the measured total.  So, if you are at 20 calories per ounce with breast milk or formula, you could add a teaspoon of formula to 6 ounces of milk increasing the calories to 22 cal/oz.  There are recipes for increasing calories up to around 30 calories per ounce.  Caloric adjustments to formula or fortification of breast milk should only be done under the supervision of a medical professional as adding and modifying calories also modifies other nutrients received by the baby and the balance should be carefully maintained by a trained professional (preferably a pediatric nutritionist).

If you are totally and completely set against formula in any form, there are other, older methods of fortification that you can turn to.  For example, coconut oil can be used to fortify breast milk to add calories.  However, please note that formula was created for a reason and it is a safer method of fortifying.  If a baby aspirates formula or breast milk with formula into their lungs, they will have fewer issues (genearlly speaking) than if a baby were to aspirate breast milk mixed with oil.

When you are fortifying breast milk or adjusting formula, you may end up increasing the richness of the food beyond the baby's tolerance.  If this is the case, the baby may vomit after feeding.  Sometimes this can be confused with Reflux, Delayed Gastric Emptying or other issues.  Ask if you can trial lower caloric fortification (or if fortifying breast milk and you haven't had one, ask for a creamocrit) it is possible that you are just exceeding baby's tolerance for rich foods.

Sometimes preemie fortification is less for weight gain and more for the trace minerals and nutrients in Neosure or other specialty preemie formulas.  Be sure you understand the reasons for fortification and if it is causing difficulty, ask what alternatives there are.  My daughter had a really hard time with constipation when we fortified her bottles.  We ran a nutrition panel to check how her bones were growing, what her blood iron levels were and a host of other numbers to see how she was doing and if we could wean down off of fortified bottles.  In the end, we were able to wean off a few months before we started solids.  Once you are on solids, you can get those nutrients through other means and wouldn't need to fortify if the reason for fortification is to provide trace nutrients.

In general, I've found adding a probiotic with approval from a physician is a great way to help improve all aspects of the GI tract.  I'm personally partial to the Jarrow powdered probiotic for babies.  My pediatrician also asked me to give my children both a D vitamin supplement since they are breastfed.  There is a study that shows if mom takes about 6000 iui per day then baby will get the Vitamin D they need from the breast milk, but it is only one study, so I do take 6000 iui and I also give my children 400 iui of Carlson D Drops.

When I fortified breast milk for my daughter after she came home from the hospital, I had to use Human Milk Fortifier from Enfamil.  I found if I called them and asked, they'd at least give me a small coupon toward the purchase.  They also sent me some coupons for Poly-Vi-Sol with Iron which we were giving as well as the fortified bottles.  It is totally worth giving them a call at 1-800-BABY123 or checking them out on the web at www.enfamil.com.
With my son, his heart condition led to delayed gastric emptying and reflux that led to some other medical interventions in addition to fortification.  I'll address that in part 2 of this series.  

Overall, The most important thing here is your baby's health and growth.  Any combination of formula, breast milk, either or both are OK, the goal is happy, healthy baby and happy, healthy mommy.

Riley's Pre-Thanksgiving Hospital Stay

We ended up in the hospital last weekend.  We went in to the ER at 3am, her RR was in the upper 50's.  They deep suctioned her and we waited around for a few hours... she was on the edge so they let me decide if I could take her home... we tried taking her home (her sats were hovering at 92, they admit when they drop below 92).  3 hours later, we went into our hospital's suction clinic and she'd tipped over the edge.  The RT sent us back into the ER, and she was admitted on oxygen.  She stayed on O2 for that night, she was off O2 and maintained her sats the next night and we were home the following morning.


For future reference, those are pretty mild retractions with a slow respiratory rate.  Unless he had faster breathing and retractions earlier and is now slowing down, I'd be tempted to wait, especially since the O2 sats are good.  Respiratory rate appears to be well under 50/min which is the cutoff for our Children's hospital.

In the situation shown above, before I'd go into the hospital, I'd go into a bathroom and run a warm shower for about 30 minutes (or if I hear a croupy cough, I'd go outside or in front of a freezer to reduce swelling, then into a warm steamy bathroom).  First thing after starting the shower, I'd suction the nose with saline(I use a nosefrida and a graco battery powered nasal aspirator).  After the 30 minutes, I'd suction again if baby wasn't easily breathing through nose.

I'd recheck respiratory rate and check for retractions and as long as they were mild to non-existent, I'd wait until morning to see either my pediatrician or urgent care.  We have a local nurse line to call and check symptoms with, so if I was feeling at all antsy, I'd call them and run through what I've done and what her vitals were at the time.  I usually count a full 60 seconds of breathing for respiratory, just to be sure... but if I'm over 25 at 30 seconds, I'm going to take the kiddo in...

Cardiac issues are for life and they affect everything

Whenever C's heart defect comes up, someone inevitably says "but he's OK now, right?"  The answer, as always, is yes and no.  I generally say "Yes, he's repaired, no his heart isn't perfect.  Some day we'll probably face further issues."  However, in practice, as we get distance from his repair, we do let down our guard.  We forget he's always sick.  We stop being hyper vigilant and we move on with our lives.  A week or so ago, that came back to bite us.  We got complacent, we treated C's GI illness like any kid's.  As I said to my pediatrician, we forgot how close the edge C rides.

C got a GI bug on a Saturday evening, he threw up several times immediately, and a couple more overnight.  We were able to get him to drink water, but as always, water is the only thing he will drink.  On Sunday, C had a couple of crackers but said he wasn't hungry.  He said he wanted a hamburger for dinner, but barely nibbled on the bun, we couldn't get him to eat anything, he only drank 3 or so glasses of water.  He went to bed early that night, still refusing to eat.  He threw up again at around 2 in the morning.   He slept in and refused breakfast Monday morning.  I called the pediatrician, we decided to bring him in for one of the first afternoon appointments.  I had TheMan come home from work to watch R so she wouldn't be exposed to the germs at the pediatrician's office.

C wasn't up for walking and certainly didn't want to go to the doctor, so I ended up carrying him to the car.  For better or worse, he still fits in my toddler sized MT, so I was able to strap him on when we got to the doctor's office and carry him in that way.  In the bright sun, he looked so very sick and dehydrated, I was scared.  When we tried to stand him up to weigh him, he couldn't stop leaning on the walls, our nurse said she thought we'd be headed to Mercy.  Once she took C's blood pressure and immediately called for our doctor, I knew we were heading for the hospital.  The doctor looked very concerned and asked if I could get him to Mercy or if we wanted to call for an ambulance. I chose to drive him there because I could have him half way there by the time an ambulance arrived, they are very close.  When we arrived at the hospital, we were immediately triaged and moved back to a room. C's blood pressure was way off and he looked miserable.  C was not happy about being at the hospital, he was certainly not happy to get an IV, but they got a line in, got initial labs and got him hooked up to a bag of fluids.  When his lab results came back, he was severely dehydrated and his blood sugar level was 34.  Let me say that again, because it makes me ill every time.. 34.  34 is seizure, coma and death levels for blood sugar.  34 is below the range of Severe  Hypoglycemia (40-35).  Blood sugar that low can cause permanent brain injury and heart damage, especially in those who already have heart issues. Beta blockers, which C is on, can help mask the symptoms of Hypoglycemia. I didn't know beta blockers could have such an effect.

C has no reserves, NONE.  We can't get any decent level of body fat on him, we try, he just isn't into it.  We have to remember he is not typical, he doesn't have reserves and we must be hyper-vigilant and proactive when it comes to his health.  Compounding that issue is his sick sinus syndrome.  His heart beats slower anyway, it fails to compensate and his system will crash faster and with less warning.  This has been a wake up call for all of us.  My pediatrician even said we forget because he's done so well, but he's still, and always will be, closer to the edge than a typical child.

After a dose of zofran to get his tummy back under control and an overnight stay to prove he would eat and maintain his blood sugars, we brought Charlie home.  I can't shake how lucky we were. Two open heart surgeries and a GI bug almost got him.

This was a terrifying wake up call.