We got a dark and early start today for N’s follow-up hearing test.

Background info:

Hearing problems are common with Lissencephaly.  I don’t fully understand why yet.  I don’t know if it’s a communication issue where the ear doesn’t tell the brain what it hears.  Or if the types of conditions that cause this brain abnormality also cause nerve issues so the hearing doesn’t happen in the first place.

Both boys had the typical newborn hearing screen in the NICU.  L passed.  N failed on both ears.  That is common enough, so I hadn’t worried about it.

Then N also failed his second test…in the left ear only.  A little less common to fail twice, but it was easily dismissed and blamed on his feeding tube at the time.  They set up a more detailed “diagnostic” appointment, which we attended today.

They did two tests while he was awake, and a 3rd test needed to be while he was asleep.  Sounds easy enough; he sleeps all day!  As instructed, we brought him hungry and had a bottle with us to ensure he could eat then fall sound asleep.

Except he didn’t.

He was wide awake.

Hello friends!

Hello friends!

We were there for two hours waiting for him to sleep for his 3rd test.  During that time he dirtied a diaper and got mad about it, got the hiccups, had some gas that made him fussy, then finally fell asleep.

But it wasn’t a deep enough sleep.  Any time he moved, whimpered, flinched, sighed…you name it…it caused “noise” on the test.

So…we have yet another hearing test scheduled.

A little bit of good news came from it.  She confirmed he can hear in both ears.  If she had to stop the testing and use the data she gathered today, she would assume he had a mild hearing loss in his right ear and a moderate hearing loss in his left ear.  Not great, but it could be worse.

She also mentioned that for some reason, being on oxygen can lead to fluid behind the ears.  I don’t understand that either.  Nonetheless, we are hopeful that if we allow any potential fluid to be reabsorbed once he is off of oxygen, AND get a more accurate test, maybe he will show stronger hearing in each ear.  So we have something new to pray about.

Next hearing update will be in a month!

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