Motor Monday-Primitive Reflexes Part Two

Here's the promised part two of primitive reflexes and why they matter. This is a short one because we haven't been getting much sleep around here lately and I'm not functioning at the top of my game cognitively!  Like I said last week, we still don't fully understand the role of primitive reflexes and their relationship to motor development though I talked a bit about how primitive reflexes are hypothesized to help with motor development.  Primitive reflexes are controlled by the brainstem and as the higher level parts of a baby's brain develop they learn movement patterns that are more complex that take over for the reflex patterns.

The important thing to know about primitive reflexes is that they aren't normally "obligatory" in that they don't happen to the extreme every time the stimulus happens. Sure, most of the time if you touch a baby's cheek they will turn toward the touch because of the rooting reflex, but it doesn't happen every time.  Obligatory reflexes where the baby or older child can't NOT do the movement is a red flag that there is something atypical going on with the nervous system.  Cerebral palsy is a good example of a diagnosis that might involve primitive reflexes that are obligatory.  Another red flag is when reflexes don't fade away as much as they should or when they should, known as persistent reflex patterns.  One study of very low birthweight infants (i.e. tiny preemies) found a clear association between the strength of primitive reflexes and motor delays (i.e. infants with very strong reflexes at 4 months were more likely to have motor delays), while another found no association between primitive reflexes and motor skills in term babies.  Persistent reflexes may also be associated with delays in other areas like reading skills.

Last week I included a picture of Isaiah in ATNR or fencer's pose. Can you picture how ATNR could seriously get in the way of rolling back to belly?  Baby looks to the left and tries to roll that way to get to mom but that darn left arm is sticking out to the side like a kickstand?!  ATNR typically fades by 4-6 months, which happens to be just when babies are learning to roll from back to belly.  A persistent ATNR could also interfere with crawling.  Picture the infant below who turns his head to the left to see his dad.  If he has persistent ATNR (which you'll remember should be integrated by 6 months), his right elbow would bend or buckle, which would be pretty inconvenient and might mean a good head bonk for baby. 

When crawling we need to be able to look side to side without
our support arm collapsing

One other interesting thing to note about primitive reflexes before I sign off on this post is that they sometimes show up again in older adults, particularly those with severe dementia or Alzheimers.  I think this is fascinating! Okay, time to try to get some sleep before the babies wake up again!

Motor Monday- Let's start at the very beginning

I wasn't sure what my first topic should be for Motor Monday, but then we got an email from someone at Geisinger asking us to answer some questions about our experience there in labor and delivery and the NICU. Answering those questions had us reflecting on our experience and me thinking about the NICU from a motor standpoint. I thought maybe we should "start from the very beginning" and talk a bit about the NICU and what the big deal is about being a preemie. (My apologies if you have the entire Sound of Music soundtrack stuck in your head now! I know I do!)  When we were in the NICU I was way too busy falling head over heels in love with our little trio and being nervous about their health (especially nutrition & breathing) to spend much time thinking or blogging about the NICU from a motor standpoint, so I might as well do it now.

Since most of you reading this blog probably aren't pediatric therapists or NICU nurses, I'll start with the basics.  What is the difference between preemies and term babies other than the obvious size difference? The general problem is that these tiny babies were born too early into a world they weren't quite ready for! Their nervous systems are not fully developed and for the most part they're so small that they haven't been squished in the uterus yet.  Because of this preemies look very different from term babies when they're laid down, either on their backs or their tummies.

Premature babies generally have low muscle tone, which means that they have less resting tension in their muscles and it takes more effort to essentially turn their muscles on.  I find that muscle tone is a challenging concept to explain to people.  In person, during my early intervention visits, I use my hands to explain the crossover of muscle fibers, but that's tricky to do in blog form, so let's try this metaphor.  First, imagine yourself sitting on a kitchen chair and think about the effort  required to stand up and start walking.  This is like "normal" muscle tone.  Now imagine yourself in lounge lizard or couch potato mode, sunken into a deep cushy La-Z-Boy recliner and the monumental effort it would require to walk to the kitchen for a beverage.  The second image is akin to having low muscle tone, or hypotonia.  It just takes more effort to get started because the muscles are starting out in a more "rested" state.  Babies with low tone are often described as "floppy babies" and feel squishier than babies with normal tone.  As they get older when you pick them up, it might feel like they're going to slip right through your hands and they may feel heavier than you expect because they don't hold their own weight.  People with low muscle tone also tend to be more flexible (hypermobile) and fatigue sooner (lower endurance).  I often have parents ask "can muscle tone change?" and generally my answer is no, but preemies can be an exception to that because their nervous system is still maturing similar to how it would in utero.  In my experience, not all preemies who are born with low tone present with hypotonia as kids.

Babies born full term are usually so big and so squished in mom's uterus for the last few months that when they are newborns they tend to rest in the aptly named "fetal position" with their hips and knees flexed (bent) and their arms in tight to their bodies, elbows flexed. In PT terms this is known as "physiological flexion."  Premature babies are born before they get big enough to be super squished for very long, if at all. As a result of this and their low muscle tone preemies don't naturally "ball up" like term babies and instead lie fairly flat. The classic preemie position is to have their legs in a frogged position out to the side and their arms flat out to their sides, often making the shape of a W. 

You can see how our babies are kind of "flattened out" when lying on their backs in their warming beds. And because they were triplets and a little more squished in there than single babies born at 34 weeks they're actually a little more flexed than some preemies.

"Gravity is rough guys!!!"

Ellie showing off the "W" arms I talked about--though fairly close
to her little body

even our "big boy" is struggling with the whole gravity thing

For comparison...here's wikipedia's example pic of a newborn
one hour after birth.  Notice how flexed the hips are and how
arms are in by the chest

Ideally, we don't let babies stay in this position for long, but instead try to mimic the "everything pulled in tight" positioning of term babies. The normal fetal position is calming for babies, which is super important for preemies in the NICU being bombarded with monitor noise, heel sticks, IVs, and other medical procedures.  It's also important to be mindful of positioning to support preemies' motor development.  If they aren't positioned well the typical preemie postures can lead to delays in meeting milestones like rolling and sitting.

an example of ineffective attempts at positioning...the rolls are there
but they aren't really doing much to support her

ah...peaceful, calm baby all tucked in tight
knees flexed up under her belly and arms in tight to her body

Ellie in a nice sidelying position. Snug as a bug
(all my positioning pics seem to be of Ellie!)

Isaiah all swaddled up to help keep his limbs in tight
(he was the first one in clothes and a swaddle because he was maintaing his temp)

An example of a much smaller baby being positioned in NICU
(granted I wish her legs were flexed more!)

      nice "hands together" positioning here  
(Thanks Heather for sharing the pics!)

One other NICU thing parents need to be aware of is that the way the workstations are set up, the babies are almost always approached from the right. This sets them up to get torticollis, or a tightening of the neck muscles on one side that can make it hard to turn all the way to the left. This is one thing I actually talked to the NICU docs about while we were there because I have had more than one kiddo on my caseload from that NICU with this issue.  (See, even in the midst of semi-crisis I can't totally turn off my PT brain!) Also, because gravity is a beast, preemies' heads often fall to one side or the other and they rarely face up.  Even if they aren't always turned to the right, this can cause a form of plagiocephaly (or flattened head), called scaphocephaly, where the babies' head is flattened on the sides and longer in the back like the sketch below from Hanger Orthotics.  This was already starting to happen to Ellie from her time in the NICU I think.  Her forehead was more prominent and her head was pretty narrow at first. (though not to this extreme)

Or if the baby's head is partially turned a lot of the time to the same side it can result in a flat spot just on the back corner leading to a head shape like this one.

you an see how the eyes and ears can
become assymetrical when this happens

The take home message is the NICU nurses and therapists play an important role in helping premature infants start from a better place when it comes to motor development!  The goal is to mimic typical newborn postures and to be very conscientious about the position of the babies' heads during their stay in the NICU.  Understandably, there are a lot of other things for nurses to pay attention to, but if parents are also aware of these vulnerabilities then they can be advocates for their babies!  Okay, time to wrap up the inaugural Motor Monday post that I am just sneaking in before heading to bed.  I need to work on getting these written up over the weekend so I can post them first thing, but, well, I have triplets you know, so that might not happen!  Let me know what you think about Motor Monday and if you have any topic suggestions!

Shots are no fun for anyone!!

But they are a necessary evil!!  I already posted this picture on Facebook, but thought I should probably get it up on the blog too so that one day our kiddos would see it. Here's what our house looked like the day after this last round of shots. (Synagis & HIB). 

It's just plain awful

So sad

Shots are no fun! They are heartbreaking in the moment and, at least so far, have left us with crankier than normal babies for a couple days afterwards. The first 24 hours after shots hasn't been too bad for us because they're on Tylenol, which tends to make them sleepier, but once they're off the Tylenol they tend to be pretty fragile. They'll be fine one minute and so sad or mad the next.

 Our friend Carrie joined me for the doctor visit on Thursday so that Michelle could get some school work done. I warned her on the drive there that their cries would be heartbreaking and they were.  I was going to try nursing them while they have the shots this time to help with pain relief, but they said that instead we could have two nurses come in and deliver the two shots simultaneously & that seemed like a good plan so we did that instead.  Immediately after their shots I nursed them to help them calm them down.  Avery was screaming so much that she couldn't even latch right away, poor thing. Carrie was surprised at how quickly they calmed with just a minute or so of nursing.  

My doctor visit helper

While we were at the office for shots I asked the doctor to take a peek at Avery's back to confirm my suspicion that the red area on her low back was indeed a hemangioma as I suspected.  It is and is no big deal. Here's a picture of it. 

Avery's hemangioma

We first noticed it when she was about three weeks old. Then it was just a small red spot and it lined up so well with the diaper covers that I thought maybe it was a blood blister from the skin getting pinched during changing. But it never went away and instead got a little bigger. It is now raised and when I checked in with "Dr. Google," it seemed to fit the description of a hemangioma. Here's a wiki link if you want to read more about it http://en.m.wikipedia.org/wiki/Hemangioma.  It will likely continue to grow over the next few months and then start to shrink on it's own, likely disappearing over the course of the first couple of years. 

I also asked the doctor about the dosage for Zantac for Isaiah because he's been fussier over the past week or two and often seems uncomfortable after eating (though not every time).  She did say we could up his dose to .6ml from .4 now that he weighs more to see if that helps.  

We can't wait til he (& the girls) outgrow this reflux business!  Sometimes spitting up doesn't seem to bother them (see this video of Ellie for example: http://youtu.be/NEztIrEsZRk), but other times they seem to be on pain or just be so sad about it. The worst though, is when it happens when they're sleeping or just falling asleep and it wakes then up!  Grrrr....  I'm actually nursing Isaiah right now because he spit up and woke himself up!  Like I said, we're ready for them to outgrow this! 

Early Intervention update

As I was writing the last blog post with the health update, I realized that I told you that we'd scheduled the early intervention evaluation, but then never followed up on how it went. The eval itself went fine. Avery was the most cooperative, being in a nice quiet alert phase and really engaging with the examiner. By the time it was Ellie's turn she was getting pretty sleepy and fussy so she didn't tolerate much. And Isaiah had fallen asleep and woke back up for his eval, so again, probably didn't put his best foot forward. But overall the examiner was impressed with them and said she really didn't have any big concerns, but that if we had any concerns or questions she would support them getting early intervention (EI) services just because they were preemies.

So we decided to do an OT consult (check in) with an occupational therapist that I know has experience with oral motor skills (I did my research before the eval!) so we could ask her for suggestions to help the girls with eating better. We only had one visit and she gave us a few exercises to do with them (stimulating the muscles around their mouths) but said she thought they were coming along nicely and would just improve with growth.  The other service we asked for was infant massage. I've done some infant massage but am not certified so I thought it would be nice to have someone come in and teach all of us (Hope, the PSU student who lives with us joins the sessions too to take baby #3).  It has been nice and we've been doing massages after baths and sometimes before bed.  Infant massage has been shown to help with weight gain and sleeping so it's definitely worth a shot!  

And for Miss Ellie, who is just a little more of a low tone/floppy baby (meaning her muscles are just a little looser/ squishy) and a bit behind her siblings on her milestones, we are doing every other week PT. It seems more than a little silly to be doing PT since I am a pediatric PT and do things with her every day, but we figured it would be a good idea to have a pair of non-mommy eyes checking in just to make sure I'm not missing anything. (Though honestly I think I'm able to maintain pretty good objectivity about it all!).

It sometimes seems like a lot just to schedule the one or two visits we have in a week so I empathize with families I work with who have even more providers to schedule with! Scheduling visits to line up with awake times is also a bit tricky right now. And I can empathize with how hard it can be to remember or find time to do the recommended activities in a week!  That is why a key tenet of EI is to incorporate therapy activities into families' daily routines...

Ellie's tummy time on Mommy's chest

    

Tummy time for everyone after eating

    

Insurance issues & growing munchkins

I spent an hour on the phone yesterday trying to sort out some problems we've been having with insurance to get the babies their RSV vaccine, called Synagis. RSV (respiratory syncytial virus) affects the lungs and for you or me would just present like a cold. But for preemies who were born with immature lungs it can be much worse, causing pneumonia and bronchitis.  Because our babies were born before 35 weeks and were less than three months old at the start of RSV season, they should be receiving the vaccine, but getting it has been a royal pain in the arse!!  They got their first dose at their six week check up because the doctor just pulled it from her stash, hoping that by the time they needed their second dose (this week) we'd have it from insurance. Well that didn't happen so now we have to make another appointment just to go in for vaccines.

Our Synagis troubles started with our Aetna insurance, name changes, and a PSU process issue.  First they were having trouble with the switch from Baby Girl B to Avery, etc so it didn't look like the kiddos were covered. Then we had a problem because PSU hadn't submitted the babies enrollment forms to Aetna, so again it seemed like the babies had no insurance.  We finally got that sorted out, after Michelle made a bunch of phone calls, but then there was the matter of the copay.  The pediatrician warned us that we could have a pretty hefty copayment (think she mentioned ~ $500) so she told us we needed to apply for medical assistance for the babies so we wouldn't have to pay that. (Because the babies were premature they qualify for MA regardless of income status.) So we did that and got their cards in the mail and it is a good thing because our copay was $1300 PER KIDDO!!! Only problem was that the Aetna specialty pharmacy wasn't a preferred pharmacy for the MA plan the kiddos were automatically enrolled in!  So once they enrollment in MA was complete, everything got sent to another pharmacy. Well that pharmacy submitted the paperwork and was told that the Synagis wouldn't be covered by MA (for some reason that makes no sense...something about it being a medical not a pharmacy benefit?!?).  We got a confusing voicemail from Dr. Brink's nurse telling us to call this patient copay assistance group.  I did that today and it said you could apply online so I started that process only to find that social security number was a required question and we don't have theirs yet!  So I called back to apply over the phone and got to spend a fun 40+ minutes on the phone completing three applications! The good news is they were approved so we won't have to pay the $1300 copay!  (This time at least. I'm guessing next month's vaccine will involve another big process like this! Oh yeah I didn't mention that the RSV vaccine is a monthly thing throughout the winter!) 

So anyway, we're hopeful that this month's dose will make it to the pediatrician's office next week and we'll get the next round of vaccines either Friday or Monday.  The annoying thing is that things will change again next month because the kiddos' MA plan will be different as of January first. When you first sign up, They auto-enroll you in one of their HMO style plans, and then allow you to choose the plan you want at the start of the new year. Fingers crossed that we made a good choice and the approval process is simpler next time!!!

Speaking of pediatrician visits, the kiddos all got weighed on Tuesday and all are trekking right up their little preemie growth curves. They haven't shot up to get into the "real baby" growth curves (as Dr. Brink calls the normal/regular ones).  They're still below the 5th percentile on those charts as you can see from our app. 

Here are their weights as of Tuesday, one day before turning 11 weeks:

Isaiah: 8lbs 12oz

Ellie: 8lbs 3oz

Avery: 7lbs 15oz

By now I'm confident that we have three eight pound babies! That would explain why they're outgrowing a lot of the newborn clothes, but the 0-3 month clothes are still pretty big on them!! At the same time, it's kind of fun to be moving on to a new batch of clothes! 

In other health news, Isaiah and Ellie continue to struggle a bit with reflux and are taking Zantac to help with that. We weren't sure if the Zantac was helping so the doctor said we could stop. But stopping for a day was enough to let us know that it is helping! Avery got her first cold last week and passed it on to Ellie.  But overall they've been pretty healthy so far and we're thankful for that!

Tummy time

                

Showing off her head control

           

Happy Due Date Babies!

Today is 11-12-13 and was the original due date we were given for the triplets. It's a long story, but eventually their due date was officially changed to 11-13-13, but we're sticking with the original just for the cool factor. Obviously there wasn't a chance we'd make it to this due date, but wouldn't it have been awesome!?  I hope all the babies being born today appreciate just how lucky they are!  Instead of being born today, our babies are almost 6 weeks old!  Now that they've passed their due date they can officially be compared to newborns.  So what a term baby does at 2 weeks old, our babies should be doing at 8 weeks.  Their "adjusted age" is calculated by taking their actual age minus 6 weeks, since they were born six weeks early.  They get this free pass until they are two, at which point, they should be caught up.  As a PT I can tell you that is usually the case in that they can usually do what most typical two year olds can, though sometimes there is a lingering quality difference (in my experience anyway).  This adjusted age will come into play next week when they get evaluated for early intervention services. Okay, babies are stirring so gotta wrap this up!

Here are a few pics to celebrate their "coulda been" due date!