DIY T-Shirt Chew Necklaces & Bonus T-Shirt Bags

Introduction

C is a big time chewer, the collar, sleeves and bottom of his T-shirts are riddled with holes from his enthusiastic chewing. We've tried several types of chew necklaces from Amazon.  The silicone chews we tried from Stimtastic (star, spectrum beads and blocks) were each destroyed in a matter of hours. The T Tubes, A&Z chews, and P&Q chews last a LOT longer, but they are messy (Drool streams off of the tubes as he chews), bulky and are not as enjoyable as cloth for him to chew on.  He strongly prefers to chew on cloth.  Another option is to wear Bite Bands as a necklace for chewing, but I don't like that there isn't a break away clasp if it gets caught. Also, all of these options are prohibitively expensive for every day use. C is an avid chewer and due to saliva build up, we go through 2-4 necklaces or shirts a day. In my ideal world, he'd use 4 necklaces a day and we'd have a few extra. I'd love to throw the necklaces in the laundry along with everything else we wash and not add extra duties into my already hectic life.

After a bit of experimentation, I've come up with a DIY chew necklace that I am very happy with.  It comes together fairly quickly, it soaks up a lot of saliva and it has a break away clasp that will keep him from getting caught up and choking on it.  I also find it very cost effective, I bought 50 Pop barrel clasps for about 14 dollars and 100ft Paracord for about 7 dollars. This is enough paracord and clasps to make 50 necklaces at 2 ft of paracord and one clasp per necklace.  I spent about 6 dollars on T-Shirts because I wanted to get specific colors, but you can use shirts already around the house.  If you use kid shirts, you will only get one necklace per strip, instead of two.  Cost per necklace appears to be about fifty cents.

Note: It appears I will be able to reuse the paracord with future necklaces as the ones he's currently using wear down.

Project 1: Chewy Necklace

Project time: 45 minutes

It takes me about 20-30 minutes to braid and about 10 minutes to weave the ends and add the clasp. I cut enough strands for at least 2 necklaces each time because I cut both the front and the back of the shirt.

Materials:

• Rotary Cutter (or Scissors)
• Bodkin (or safety pin)
• T-Shirts - Look for a thicker fabric shirt without side seams.  I used black plus the rainbow (red, orange, yellow, green, blue, purple)
• Each shirt was a size medium to large adult men's shirt.
• I cut 2 loops of black, 1 loop for each of the other colors.
• 550 Paracord
• Pop Barrel Clasps (watch the pull weight for break away and get what makes sense for your kiddo and their age, weight and gross motor development.)

I began this project by cutting the T-shirts.  I knew I didn't want to include any printing in the chewy necklace, so I cut each T-shirt off just below the beginning of the graphics.  I saved that portion to be made into a bag (See bonus project at the end of this post). 

The T-shirts I am using are made of a single loop of fabric without a seam. I cut each of the 7 T-shirts into loops, then I cut each loop in half, making 2 strips each time I cut.  I have tried 1/2 inch, 3/4 inch and 1 inch strips.  I find I like 3/4 inch best.  At 1/2 inch, my son tends to fold the necklace in half and chew, which I suspect will decrease its life.  At 1 inch, I feel like the necklace is too bulky and noticeable.  I was going for something that didn't look like it was there just for chewing, as some of the giant letters or beads do. I also cut 2 feet of paracord for the base of the necklace.  

I have found using the rainbow really makes creating these necklaces easier to track.  On one side I have black, red, yellow, and blue.  The other holds black orange, green, and purple.  Then, when I braid, I do black, black, red, orange, yellow, green, blue, purple, the same order as the rainbow.  I'm going to use this color scheme for the purposes of the tutorial as having all the separate colors also makes it easier to explain.

I tie the paracord to a stationary item that I can pull against.  The paracord is the core of the necklace, the t-shirt strips will completely surround it. Next I tie each strip on in a double knot, facing alternating directions.  Make sure the tail is about 2 inches long after you have tied on.  These will be covered by the braid along with the paracord.  It makes the starting end a little bulky, but is the cleanest way I have found to start.  After creating several necklaces, I decided on this route to tie on because it doesn't anchor the t-shirt braid on either side.  You can stretch it around and have it float a bit which gives you greater flexibility when tying off.  It also allows you to adjust the thickness of the braid by scrunching it closer or stretching it further apart while leaving it centered on the paracord.

1. Black with the tail the short piece on the left (braiding portion is on the right)
2. Black with the tail on the right
3. Red with tail to the left 
4. Orange with tail to the right
5. Yellow with tail to the left
6. Green with tail to the right
7. Blue with tail to the left
8. Purple with tail to the right

You are now ready to begin braiding.  Here is the video I used to come up with this necklace.  This person is making a dog's leash. For the rainbow necklace, you will start with the black strand on the right (the side with the red braiding portion).  Holding 4 strands in your left hand and 4 strands in your right, drop the black strand from your right hand and let it dangle straight down.  Bring it around behind the paracord.  It will go between the 4 strands, with black and orange above it and on top of the green and purple strands.  It will end up back in your right hand, at the bottom of the 4 colors.  As you bring it around, be sure it is covering all the t-shirt tails in addition to the paracord.  The t-shirt strands are not anchored, so you will need to be careful not to apply too much tension.  I tighten the braid strands on every 4th pass (so after orange and again after purple).  The second pass will be the black strand on the left.  Drop it so it dangles straight down, then bring it around to the right hand side and between red and yellow above it and crossing over the blue and black.  Then do the same with red, drop it straight down, bring it up between orange and green above and over the purple and black.  Then orange will drop straight down, coming up between yellow and blue above and red and black below. Each time, make sure you have continued to cover the tails from where we originally tied on.  Once you have orange back on the left, go ahead and gently tighten the weave around the tails and paracord.  By the time you've cycled through the rainbow twice, you should be past the tails and braiding should be going smoothly.  Braid until you are within 3 inches of the end of the paracord, or until you only have 2 inches of any of the braiding strands left to work with, I always end with the two black strands braided last.

Now it is time to tie off the ends.  To tie off, I cross the colored strands across the front to opposite sides (red crosses across the front from the right to the left, orange does the opposite) then I double knot them on the back side of the braid.  I tie Red to Orange, Yellow to Green, Blue to Purple, then I try to use the black to cover the other knots and tie them together as well.  It doesn't always work, but it is the best finish I've been able to come up with.  

I then use my bodkin to weave the ends back into the necklace.  I weave them through a few times, to make it as secure as possible.  

When all the ends have been woven back into the necklace, cut off the excess tail and give the braid a little tug, the ends should disappear back into the braid. After a couple of washes, I've noticed some are coming back out.  I tuck them back in with the end of the bodkin or any small blunt object (chopsticks and safety pins have also worked for me).

To add the barrel clasp, slide the paracord back off of the inner strings and trim about 1.5-2 inches of the inner 7 strands off.  Do this for both sides of the necklace.

Next, insert the paracord into the hole in the female side of the clasp.  Make sure the clasp side is facing away from the braid.  It is super frustrating to get it tied on and realize it is facing the wrong way.  On the other side of the necklace, slide the male side of the clasp on that side (again, double check that they will clasp together before tying off.  

Tie a knot in the very end of the cord on each side and pull it down through the clasp so it won't get in the way of the closure.  

Open and close the barrel clasp several times to make sure the ends are securely tied and the clasp is fairly easy to open.

Here are three necklaces, 1/2 inch strips, 3/4 inch strips and 1 inch strips.

Plus a picture of the 1.5 inch strip necklaces I made in grey and red when I was first starting out.

Here are 2 necklaces, one before washing, one after.  They clean up well and seem to do fine thrown in the laundry with everything else.

Bonus Project: T-Shirt bags

Fold the shirt in half and cut the sleeves off of the remaining portion of the T-shirt that you didn't cut off to use as chew necklace strips.

Open the shirt back up and cut out the neckline, this will be the opening of your bag, cut it as wide as you want.  The arm holes and the neckline together form the handles.  If you think the handles are too wide, you can sew the bottom of them closed a bit in the next step.

Turn the T-shirt and both sleeves inside out.  Align one of the sleeves along the bottom of the tshirt and sew a seam along that bottom.  This is where you an also sew up some of the arm holes if you want the handles smaller.  

Once you sew the bottom seam and the sleeve is secured, you can either flip the bag right side out and use it, or you can fold it up and flip the sleeve inside out, stowing the bag inside the sleeve.  I use this bag to store my necklaces currently in progress.

Take the other inside out sleeve and sew a seam along the bottom side of it.

Use a seam ripper to create two small holes on either side of the seam on the underside of the sleeve.

Use your bodkin or a safety pin to thread a strip of t-shirt material through the first hole.

Continue threading the t-shirt material through until your bodkin emerges on the other side, then pull the strand to even the drawstring out.

You now have a bag for storing your chew necklaces.

Calorie Packing 101 - Part 3 - Big Kids

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

• Part 1 - Babies
• Part 2 - Medical Barriers to eating
• Part 3 - Bigger Kids

Part 3 Calorie Packing For Bigger Kids

A nutritionist is generally going to first look to liquid calories first as they are easier to quantify.  Liquid calories are awesome, but sometimes REALLY hard to get into a stubborn kiddo (like mine).  If you can do liquid calories, fantastic.  There are a number of great options out there.  Smoothies and shakes are a great way to hide nutrition and calories in a quick drinkable form.  My favorite recipe page is the Golisano Children's Hospital recipe page.  In general, avocado, oils, nut butters, heavy cream (a little goes a long way), and protein powders are a great way to calorie pack any liquid shake.  However, you should talk with your nutritionist to make sure you balance how you add calories into your child's diet.  You don't want to overload their system (for example, too much protein can be hard on the kidneys).  Beyond home made smoothies and shakes, there are a range of high calorie commercial drink options.  First, of course, there is the ubiquitous carnation instant breakfast.  This standby is a pediatric goto for getting kiddos to up their calorie intake.  From there, you can get into some boxed drink options like pediasure, ensure, and boost.  The creamy type drinks can also be made into ice cream and shakes.  If your child doesn't like the creamy/milk based drinks, there are some commercial options for you as well.  Boost Breeze is a juice based option and comes in a variety case of 3 flavors.  Ensure Clear is another clear drink option which last I checked came in apple or mixed berry.

My child, of course, would have none of that easily quantifiable liquid calorie intake.  Instead, we were stuck with calorie packing our solid food offerings.  This is, to me a more difficult proposition. Especially if your child (like mine) won't take anything of a liquid or puree consistency.  In general, your calorie packing options for solid foods revolve around heavy cream, butters and oils.  We found, for example, that adding coconut oil to dole fruit cups would make them taste like pie filling.  Cheese is another great option for calorie packing.  My son's spaghetti always got an extra dose of olive oil and a large helping of cheese. For anything that uses eggs, you can add extra egg yolks, which is a great way to boost calories in baked goods.  In general, calorie packing in the solid food arena is all about unobtrusive additions of oils and fats.  My rule of thumb has been to add coconut oil to anything sweet and olive or rice bran oil to anything savory.

In my kiddo's case, we got pretty desperate to add calories, so I went into the full on medical calorie packing options.  The main options here are Benecalorie and Duocal.  I found that Benecalorie was pretty dang gross and for me, not much better than an oil when added to food.  Duocal on the other hand, was awesome.  We could send it to daycare so they could add it to his lunch.  Also, in small quantities (we found about a scoop per 5 oz water) it can add calories to water without really affecting the taste.  Every little bit counted, so "white water" became our goto drink.

In the end, one of our best tools has been Periactin as an appetite stimulant.  Periactin is an allergy medication that has a side effect of boosting appetite (it can also help with cyclic vomiting issues). Over time, the side effect of appetite stimulation wears off. We have found that taking one week off per month gets us the best bang for our buck.  The down side is that the first 2-3 days he goes back on Periactin are pretty miserable. He's tired and grumpy, and super hangry.  We get a lot of weight gain, but a few days of the grumps at the same time.

I found that the focus on eating has led to a lot of anxiety and stress over the whole eating and weight process.  My best defense has been to employ the Ellyn Satter Division of Responsibility in Feeding.  I have to be careful to find balance, because if I completely relax, he tends to stop growing, but if I pay too much attention, I make myself crazy.

We have recently started working on recreating foods he likes with purees.  Check out the cookbook Deceptively Delicious for more information.

I hope this helps, please let me know if I missed anything or if you have any questions.

Back to Part 2

Pumping to feed baby when you have to be away

Having to go back to work and the associated stress can really do a number on a mom's sense of well being.  Trying to balance the demands of pumping while at work can be a huge undertaking and lead to significant stress.  Often moms become panicked about their supply once they begin pumping and can physically see milk quantities instead of just breastfeeding and watching baby grow.

Generally speaking, your best bet is to pump at the times baby would normally feed.  Part of the Patient Protection and Affordable Care Act (Obamacare) worked hard to address the needs of nursing moms who go back to work.  The law provides for breastfeeding/pumping equipment to be provided through insurance (check with your insurer for details) and requires employers who fall under the act to provide adequate facilities and time so that moms can express breast milk for her nursing child (up to 1 year after birth).  You can read more details on federal breastfeeding laws here.

Moms are often shocked by the amount they express when they start pumping.  There are several factors at play that feed into their concern.  First, effective pumping will generally empty about 65% of the available milk, babies on the other hand will empty about 85% (on average).  Second, when baby is bottle fed in the traditional methods, they will drink about 25% more than they'd comfortably drink while breastfeeding, this can lead parents and caregivers to think baby needs more milk than is actually required per feeding.  Third, when mom is home, baby can be fussy and demand more time at the breast.  This is called cluster feeding and can be attributed to both a desire for food and comfort.  In my experience, when mom has been gone for a while, baby likes to nurse more frequently as a way to reconnect.  Babies may also choose to reverse cycle when away from mother during the day.  This means they will choose evening and overnight as their high demand eating time, instead of during the day.  They do this because they prefer to eat from mom and be with mom, it can be a bit exhausting sometimes, but it is all out of love.

Generally speaking, a mom who is away from baby can expect to express a total of 2-4 oz per pump session.  Because pumping will always remove less than baby can, this can lead to a tight supply of expressed milk.  There are a couple of tricks you can use to make sure there is adequate milk available for baby when you have to be away.  First, you can add a pump after the first morning feeding.  Because your prolactin level speak overnight, you generally have a lot more milk in the morning vs the evening.  By pumping off the excess after baby eats in the morning, you can add to your baby's stash during the day.  Second, if you can swing it, you can pump once more than baby would eat while you are away.  I have been told (and noted from personal experience) that your body will produce milk when it expects to be used, so a consistent pumping schedule will also help you achieve the results you are looking for.  Kellymom has a great article on how much milk is needed when you are away from baby.  You can read it here.  Kellymom is an amazing resource for all breastfeeding questions in general, if you haven't bookmarked it by now, you really shoud!

Another way to help ensure your baby has all the milk they need is to have caregivers practice paced bottle feeding.  Paced bottle feeding has many benefits, not the least of which is helping make sure baby doesn't eat and preventing flow preference issues that can make breastfeeding more difficult.  This is my favorite video for paced bottle feeding techniques.

Pumping is all about technique and mental cues.  The letdown reflex can be trained, which is something you can use to your advantage.  When I pump, I always have ice water with me and when I hear the pump's letdown sequence, I always drink seven swallows of water.  Over time, following that same routine helped my body cue that the sound plus the water meant it was time to release milk.  You can use any cue you'd like to achieve the same result. Here is a great article from Kellymom on working with letdown and cues you can use both for nursing and pumping.

Additionally, when you pump, you should use hands on pumping techniques to maximize milk expression.  This video from Stanford's Lucille Packard hospital is fantastic for learning hands on pumping techniques.   For me, I find hands on pumping practically impossible without a hands free pumping bra.  After years of pumping, I've found that the bra I like best is the Simple Wishes bra (now with even more awesome options such as all in one versions and more color choices!). I also hand express directly into the shield when I am finished pumping.  I can get as much as another ounce out by hand expressing using the marmet technique.

To make my work pumping life easier, I have several sets of pump parts.  I keep one at the office for emergencies (which has come in handy for myself and several of my coworkers).  I also bring all the sets of pump parts I need.  If standard breast shields aren't working for you, you may want to look into the pumpin pal shields.  If you need a hand pump, I'm hearing neat things about the Haakaa pump.  If you have a long driving commute, or suitable public transpo, you can also consider pumping en route using a battery pack, power bank, or rechargable pump.  Most of my links are for Medela products, which have been my sole experience (I own a Symphony and a Pump In Style Advanced (PISA)). But I've heard fantastic things about the Spectra system as well.  Note: Insurance provided the PISA, I bought the Symphony off of Craigslist.  If you buy off craigslist, be sure to get the Serial Number and call and check with Medela to make sure it wasn't stolen.

You can put your pump parts in a ziploc bag and keep them in the fridge between pumps, but I personally don't like the cold, so I prefer to have several pump sets and make my husband wash them, haha!  As far as drying pump parts, I really like the Boon's grass drying pad and accessories.  The trees are excellent for hanging the valves and the flowers are a great place to store membranes.  If you have your own office space, a small fridge may be a great way to keep your milk stored away from coworker lunches.

For more tips on breastfeeding in general, pumping, supply boosting, etc.  You can check out my post Breastfeeding Primer.  I also have more tips on pumping in my post about initiating milk supply with a pump.  If you've been exclusively pumping and want to transition to breastfeeding as well (or know someone in this situation) I also wrote a blog post on that topic.

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.

• Part 1 - Babies
• Part 2 - Medical Barriers to eating
• Part 3 - Bigger Kids

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.  

Reflux

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 1 | On 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.

• Part 1 - Babies
• Part 2 - Medical Barriers to eating
• Part 3 - Bigger Kids

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.

On to Part 2

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.

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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.