Hearing Update

This is long overdue.  So if you will remember back with me, Phoebe was born with a mild unilateral hearing loss in her left ear that was diagnosed as a newborn.  We have been back for many follow-up appointments and had many tests and recommendations made to us over the past 14 months.  Since she was about 3 months old they had been wanting us to do a sedated ABR test to determine if her hearing was degenerating or not.  We were hesitant to do so because of the invasive nature of the testing.  But long story short after going in to the ENT for non-invasive earning screens every 4-6 weeks (which was completely miserable by the way and a waste of time in hindsight) they got very insistent upon repeating the ABR.  Basically some of these non-invasive tests seemed to be indicating that her hearing was worsening in her left ear and that she also had developed some loss in the right ear.  Chris and I were still hesitant but after several lectures where they basically told us if we didn't intervene now she might never be able to catch up (still not sure if that is true or they were just saying whatever they could to convince us to see things their way) we acquiesced.

So just before Phoebe's first birthday we took a trip over to Scottish Rite for this hearing test.  And it was traumatic- at least for me.

Here's Phoebe waiting to go back into the OR.  They had all sorts of fun toys to play with in the pre-op area.

They let me walk back into the OR with her and lay her on the table.  She was real curious at first, but as soon as they laid her down and put that mask over her face to sedate her she started screaming and fighting and they had to hold her down.  At this point I am in tears and next thing I know they are whisking me out of the  OR as her eyes are getting heavy.  All in all, she really wasn't in there long.  Chris and I waited in the recovery room for what felt like forever, but I think it was just under an hour.  When they brought her out she was hysterical and inconsolable.  Apparently the anesthesia can give them really bad gas, so that is what I think was bothering her.  She finally calmed down; they took out her IV and we actually got to leave much sooner than I expected.  She was fine the rest of the day- acted like nothing abnormal had happened that morning.

After the test we spoke briefly to the audiologist and my understanding was that her hearing had not significantly changed.  Wrong.  When we got the dictation report in the mail about a month later, sure enough her hearing in her left ear had worsened.  Thankfully her right ear is still unaffected.

When we followed up with the ENT she is still not recommending a hearing aid, which we were happy about.  She said that most children with unilateral hearing loss don't like the aid and tend to pull them out.  Unless she ends up having trouble in school down the road or her right ear starts to show some problems, we will not need to go down that road.

Because hearing loss can be associated with heart problems and eye problems, the ENT wanted us to have an EKG, CT scan, and follow-up with and optometrist.  Apparently there is some severe retina problem they are potentially concerned about, but she is too young to test for that at this point- or at least to test her without putting her to sleep.  (Yet, they still want us to see an eye doctor now so they can start following her) Honestly, I didn't really understand all the potential eye problems, but I'm sick of doctor's appointments and co-pays right now so we haven't made any efforts to see an eye doctor.  I did want to do the CT scan to make sure nothing was obviously structurally wrong and we agreed to the EKG because it is quick and non-invasive.  Actually the EKG took all of 20 minutes from the time we walked in the office to the time we walked out- it was great.  And everything looked normal.  For the CT scan we were prepared for them to start and IV use light sedation (nothing like the gas mask in the OR with the ABR), but they agreed to try without  sedation first and Phoebe cooperated and laid still.  So that was also a quick and easy test.  And again thankfully it came back normal.  (So really, what are the chances there is really anything wrong with her eyes?)

Because the EKG and CT scan were normal they are assuming it is a genetic hearing loss.  We could do testing to determine the responsible gene, but honestly I don't care what gene is responsible.  Its not like knowing the gene is going to fix her hearing...  Remember punnett squares from biology?  Well, because hearing is a recessive trait the chances that future children could have this same genetic hearing loss is 1:4.  I did take a genetics class in nursing school...I should probably remember some of these things.

Anyhow, our little girl is healthy and her language has really taken off in the past month.  She's certainly not ahead in talking and language development by any stretch of the imagination, but she does say about 10 words.  Not too shabby.  The ENT wants to repeat the sedated ABR at 18 months.  I'll tell you right now there is no way we are doing that.  Maybe we'll consider it at 2 years old and then by 3 years old the booth tests should be relatively accurate because she will hopefully be able to tell you when she hears all the test noises.  If we do it again at 18 months, she will just want to repeat it again in another 6 months and there is no good reason we need to sedate Phoebe every 6 months to check her hearing "just in case its gotten worse"

Pretty soon there will probably be a label on Phoebe's chart: "non-compliant parents"  Oh well.

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

Hearing Update

So back in September Phoebe had a fancy hearing test called an ABR (Automated Brain Response) down at Egleston to confirm a slight hearing loss in her left ear.  The audiologists wanted to keep a close eye on her hearing because these first few years are so important for language and speech development; they are not sure if her loss will deteriorate further or if any type of deficit will develop in her right ear.

The ABR measured her brain response to sound stimuli in each ear.  In November, when Phoebe was 3 months old, we went back for a second ABR.  They were unable to complete the test at that time because in order to receive accurate results the baby must be very still in a deep state of sleep.  As babies get older their sleep becomes more restless.  Phoebe was asleep on my lap for the test and it looked to me like she was sound asleep, but apparently she was having enough muscle movement (undetectable to me) to interfere with the test.  So at that time they had recommended an sedated ABR.  They wanted to artificially sedate her to ensure a deep state of sleep and then repeat the ABR.  We said no.  I'm not going to sedate my baby to determine IF her very mild hearing loss has deteriorated further.

So instead we opted for a behavioral hearing test, which we had done last week.  Unlike the ABR this test is not ear specific or as accurate (at this age) so it will not be able to measure the level of hearing in each ear.   But we figured if she has some loss in her left ear, but fully compensates with her right ear, who cares??  So we did several preliminary tests and then went and sat in a sound booth.  The audiologist played sounds at different frequencies and "rewarded" Phoebe for turning towards the sound.  Phoebe did well and was apparently able to respond appropriately demonstrating a normal hearing using both ears in the sound booth.

Then they put in ear buds to try to test ear specific hearing but they really were not able to get accurate results.  She was getting tired and fussy.  So now they are recommending follow-up hearing tests in the sound booth every 3-6 months until she is three years old and then I think maybe yearly??  And they want us to follow-up with an ENT.  We actually did see an ENT back in September at the request of our pediatrician when Phoebe was about 6 weeks old and it was a complete waste of my time and money.

I'm thinking we will go back to the ENT in April or May after we do our next sound booth test.  Chris and I both think she can hear just fine at this point and aren't really concerned about it getting worse.  Of course we want to monitor her hearing because this is such a crucial stage for language development, but I'm still not convinced (or maybe just naively hopeful) that her unilateral mild high frequency hearing loss will stunt or harm her language development.

Hearing Screen

I hope everyone is having a fabulous holiday weekend!

Thank you for your prayers yesterday.  Just a quick update about Phoebe's hearing.  She does have mild sensorineural hearing loss in her left ear.  They don't know exactly what the cause or problem is, but believe it is a problem in her inner ear or with her hearing nerve.  The good news is that it seems to be very mild.  She only has trouble hearing higher pitched or higher frequency sounds.  The higher frequency sounds she can hear, but only at a higher volume.  So a normal volume of talking would be 20 decibels.  She can hear all pitches at this level except the higher frequencies; these need to be 30 decibels for her to hear them out of her left ear.  The audiologist does not think it should cause any problems with speech development.  She wants to keep an eye on her hearing and test it again in another couple months to make sure it is not getting worse.  At that point she also talked about referring us to an ENT to see if he could determine the cause of hearing loss.

I am relieved to know what the problem is and that it is only a mild hearing loss and thankful that her hearing in her right ear is unaffected.