Wednesday, May 16, 2012

What is Normal?

So I fell off the band-wagon blogging for a couple months.  I stopped pumping and no longer found the time to sit down at the computer!  And then I was really unmotivated for a few weeks.  But I'm back in the game now.

What is normal?  Is any baby normal?  Is any person normal?  Someone told me that every baby develops differently and hits milestones at different times but everyone should even out by 2 years of age.  Maybe this is the case?  Perhaps I am being an overly-sensitive mother or a mother in denial, but I have been a bit frustrated recently on how certain doctors- mainly my pediatrician- seem to be overly concerned about Phoebe's development.  I am very thankful for doctors and medical professionals and this abundance of medical technology that is available to us; however, I think it can all be over-used to look for problems that don't exist or don't necessarily need treatment at this moment in time.

Phoebe is almost 9 1/2 months old now.  We are going to dub 9 months as the "month of doctors".  I don't really like doctors or really any medical professional at this point in time (and yes I am one).  Over the previous week we had 5 different doctor appointments- that is just absurd.  

Doctor #1- Audiologist.  We had another follow-up hearing screen that was a waste of my time.  They put Phoebe in a sound booth with headphones and tried to determine her level of hearing in each ear independently.  The audiologist would play sounds at different frequencies and decibels into one ear or the other and she was supposed to look towards the side where she heard the sound.  When she looked in the appropriate direction from which the sounds were played she was rewarded with a brief video clip on a television. She was not particularly cooperative (which is expected at 9 months of age) so we learned nothing new.  This particular audiologist at the Marietta satellite campus of CHOA was less than impressive.  This is a hard test to use at Phoebe's age so it is not completely her fault that we were unable to get any results.  We did one at six months which did not tell us anything so they wanted to repeat it at 9 months, but warned we were not likely to get much more of a response at 9 months either.  I'm not sure why I agreed to make the appointment...

Doctor #2- Pediatrician.  She told us she was no longer on the growth chart; she is now "labeled" FFT or failure to thrive and that we need to see a GI specialist.  At nine months Phoebe weighs 14lobs 5oz.  So of course I know that she is little, but as soon as Failure to Thrive was mentioned I did have a minor breakdown.  When I think of FFT babies, I think of emaciated babies in the hospital with a g-tube.  This is definitely not Phoebe.  She might be little, but she's an extremely happy bundle of energy.  (I'm over the label now...she's little.  It is what it is.)  Our pediatrician has been talking about doing some blood work for awhile now to rule out any thyroid or metabolic problem.  I think this is a bit over-kill.  There is no metabolic problem...the problem is that she doesn't eat.  If she doesn't eat then she can't gain weight- it is common sense and I'm not sure why she feels the need to complicate or over-medicalize (I might have just made that word up) the issue.  

She also feels that Phoebe's gross motor skills are lagging a bit behind normal so she wants her to be evaluated by a physical therapist.  Yes, Phoebe was a little late to sit-up and roll over.  Currently, she hasn't started pulling up yet, but she's not late for that milestone yet.  Not babies do things all at the same time- there is a range of normal and we happen to be at the back end...  So I'm not 100% sure we need to bring in another specialist at this point.  But yes, I did go ahead and make the appointment.

Doctor #3- Ear Nose and Throat.  We saw her when Phoebe was 5 weeks old and I have been canceling appointments and putting them off since then. But I finally did go back 8 months later... Last week she told us that because we have not been able to get concrete results in the sound booth to quantify the extent of her hearing loss at 3, 6, or 9 months (is it getting worse or staying the same) that she strongly recommended a sedated ABR (a more accurate ear-specific hearing test that involves sedating and intubating your baby.)  We have declined this test several times before.  I simply cannot see the benefit in sedating a 9 month old for a mild documented hearing loss just to see if it has gotten worse or affected the other ear.  If her hearing has not worsened we would not do anything except continue to test to see if it gets worse.  If it has affected her other ear or other frequencies then they would fit her with a hearing assistance device at this age.  I would much rather WAIT AND SEE if she shows delays in language development or hearing difficulties and then proceed with the more invasive testing if it proves to be necessary.  I would rather play catch-up on the back end with more intensive speech therapy rather than proceed with invasive testing on the front end.  I understand this might not be everyone's decision for their child, but it is ours.  If she compensates with her good ear and we continue to work with the speech therapist (as we are currently doing) and there are no significant language delays then I don't really care what the exact frequencies and decibels are that she can't hear. 

While at the ENT we also saw her audiologist who did the exact same thing the CHOA audiologist did a few days earlier, and then also recommended a sedated ABR because she was unable to get the data she was looking for.  So now the audiologist and ENT want to do these sound booth tests much more frequently than every 3 months since we are refusing the sedated ABR.  She wants us to come back in 2-4 weeks for a repeat hearing test- we choose 4.

Doctor #4- Speech Therapist.  Kelly is our speech therapist through Babies Can't Wait (a federal and state funded early intervention program for children with developmental delays or disabilities).  We do like Kelly, she comes to our house for therapy sessions every other week.  She has worked with us and Phoebe on language development as well as helped us with some of her feeding difficulties.  She thinks that Phoebe's refusal to finish her food and bottle might be resulting from an oral/motor weakness or fatigue.  She is also concerned about Phoebe's swallowing abilities (she apparently coughs and chokes more frequently than "normal").  Phoebe was late to babble and apparently babies this age should be able to make 8 different consonant sounds and Phoebe is only making 3, well now 4- she just starting saying "ba".  But it is unclear whether this is because of a hearing deficiency or an oral/motor weakness.  Kelly has given us some different feeding techniques to try to get Phoebe to eat more.  She has also shown us some oral exercises to help strengthen Phoebe's mouth and jaw as well as help make her aware of different areas of her mouth needed to make sounds.

Doctor #5- GI specialist.  My favorite so far.  He was very practical and laid back and actually explained his thought process, which I appreciated.  I felt like his approach to things meshed a little bit better with my personality.  He did not want to do any fancy tests or blood work at this time.  He said she seemed to be healthy- just very little.  Her liver, spleen and internal organs are healthy.  He agreed with me that she is little because she doesn't eat very much so we need to pack in the calories into what little she will eat.  Makes total sense.  I had actually tried to do this previously by adding olive oil to some of her food that I made, but she wouldn't eat it!  So I stopped trying after that because I'm not into wasting food.  Meal-time can already be stressful when we're trying to feed her something she likes so fighting over something she doesn't like wasn't worth the trouble and was not adding calories.

His prescription was to add 2 tsp of butter or 2 Tbls of heavy whipping cream to all of her solids.  And then to add an extra scoop of formula and 1/2 tsp of canola oil to her bottle.  He is looking for her to gain about 10 grams/day so when we go back in 6-8 weeks he would like her to have put on a pound and a half.

Whew, and that is what we've been up to over the last week or so.  Going to the doctor.  I am hoping to stay away from the waiting rooms and co-pays for a little while now.  I have a surprisingly healthy daughter to be spending so much time at doctor appointments.

My little peanut


  1. Oh man Jen I'm so sorry y'all have gone to so many doctors lately, it sounds exhausting both mentally and emotionally. What a cutie Phoebe is though, we need to get together soon!!

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