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Sunday, February 20, 2011

Can you hear me now?

Because of the speech delay, our pedi wanted the kids to have a hearing test to rule out hearing problems as a cause. When I scheduled the tests at Children's Hospital they told me that it would take about an hour per child. Given that, I scheduled each child on a separate day all in the same week. It meant 3 visits and figuring out who was going to watch the other 2 but unlike the pediatrician visit a hearing exam probably would not be successful if there were 2 other screaming kids in the background.

What I didn't realize is that hearing tests at this age are really considered a type of screening and not a definitive test. They can't isolate the ears unless they do what is called an Auditory Brainstem Response (ABR) test which measures the response of the nerve to stimuli and can only be done if the child is sleeping or sedated. So instead they do a combination something called behavioral audiometry followed by an evoked otoacoustic emissions (EOAE) test. In behavior audiometry the audiologist watches their behavior in response to sounds in a controlled environment. All of the kids loved that test because we sat in this booth with speakers on the right and left. Whenever they correctly turned to a sound little animals these plastic boxes would spin or dance.

The EOAE test was not as popular. They put what looked like an earplug in each ear that emitted sounds and measured the response of the hair cells in the inner ear to the sound. The child is supposed to be quiet for proper measurement which doesn't always work if you stick something in their ear and then their mom holds their arms down so they can't pull it out. Addy screamed and they were only able to get her measurements between the screams when she was taking a breath.

Good news is that Addy and Eloise passed with flying colors and they don't need to go back. The bad news is that Beckett failed 1 of the 5 frequencies on his left ear. I don't quite understand the whole thing because they said 3 of 5 is passing the test. He got 4 of 5 (passing!) but this screening test showed no response for the high frequency where we hear T's and S's. He needs to go back in 6 months for either repeat testing or to try to do the ABR if he will cooperate. Hearing loss in one ear at this frequency, if that is indeed what he has, would not be the cause of any speech delay so there is no need to do anything immediately.

Honestly, I'm pretty freaked out about the whole thing. Mostly because it was unexpected. There is and was so much that we read about what can happen with high order multiples and prematurity. Before I delivered we got a frightening discussion with the NICU team about possible scenarios from head bleeds, brain damage, blindness, lung problems, heart problems, long term feeding problems, developmental delays and the list goes on including death. I feel like we successfully dodged most of those problems and are working on putting the rest (speech delay, RSV restrictions) behind us in a matter of time. I don't remember ever discussing hearing loss. Maybe we did. I don't remember it.

I've been doing a little research and it looks like some of the hearing loss risk factors apply to all the kids- prematurity, NICU stay, low birth weight and elevated bilirubin levels. But Beckett also was very jaundiced and was followed by a GI specialist to watch his liver development so his bili levels were elevated for about 3 months= risk factor. Beckett was also the only one to have a PDA in his heart which was closed by a medication called Indocin. From what I can tell, Indocin is considered an ototoxic (causing damage to the ear) drug in large doses.

So did the medication that we opted to give Beckett to avoid surgery on his heart possibly cause hearing loss? Maybe. I don't know. But I do know that many of the interventions done in the NICU are done to preserve life while acknowledging unwanted negative consequences. Take for example something seemingly as simple as oxygen. All of our kids were on oxygen yet oxygen administration in premature infants is linked optical damage or blindness. It's all a question of asking- Does the benefit outweigh the risk? With oxygen, without a doubt. Not even a question.

I think back to the day the neonatologists were disagreeing with the cardiologist about whether or not to treat the PDA or wait to see if it closed on it's own. The neonatologists were saying that because his oxygen requirements were down, he was not symptomatic. That was 11 days after they were born. The medication is only shown to be effective if given with within 14 days of birth. If it did not close then he would require surgery on his heart. I will never forget the image of my little tiny boy that was just barely over 3 lbs, yellow from jaundice, every rib showing and the skin pulling between each rib with effort from every breath. To me he was symptomatic and surgery was unimaginable.

So now what do we do with this information. And does it even matter what caused the hearing loss if that is what it is? Maybe not.It is my way of trying to make sense out of an unexpected diagnosis. It's hard not to second guess the decisions we make as parents in the hopes that we are doing the best for our children.

This reminds me of a conversation I had with a friend a while back. He asked, "When are they not going to be preemies anymore?" or something like that. I don't remember my response but at the time I probably responded referring to their lung development or at age 2 or whatever. Now I wonder if that is true. Talk to any parent to has spend time in the NICU with their children or look at any blog with a NICU stay and you will inevitably see the the term "NICU Rollercoaster." I mistakenly thought we had gotten off that ride. Guess we were just climbing for a really long time.

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