The Results

Well, we had our hearing test which was almost humorous in what a big deal it was to pull off. We had lots of trouble getting the right kind of appointment and so we finally got set to have this sedated hearing test which meant the babies needed to be asleep for it. So the doctor wanted us to give this heavy duty sedative and told us we had to call our pediatrician and request it. So, our pediatrician is pretty cautious and was like sorry not giving you hard core sedatives, ask your nephrologist. So we asked Dr Swinford who, thankfully, was unwilling to risk any problems from heavy sedatives with the babies histories of heart and respiratory issues. So she said they could have tylenol and nothing more. So the audiologist said we just had to wake the babies up early, keep them awake all morning and give them tylenol when we got there. So it was quite a day and we were amused by the grandparents in the back seat on the way there trying so hard to keep the babies awake, using every trick in the book. We nearly didn't get Max's test done because he was like refusing to go to sleep! Al's mom had the magic touch and so Max ended up having his hearing test while in his Marnie's arms (and I think she's got sore arms today!) Addie got pushed around in the stroller while Max went and fell asleep so it was a bit easier with her.

So they did this brainwave test and it was pretty interesting. The doctor would administer clapping like sounds through earphones at different decibels and check their brain for a certain wave response. And they would repeat it several times at each decibal and hope to see a similar wave each time. If they do, it means their brain received the sound signal. If they have just looks like random ups and downs and is different each time, it means they did not hear the claps. They start at 80db which is really loud- like the sound of a blow dryer, blender, lawn mower, traffic etc. Last time when they did the test after surgery, Max and Addison did not show a hearing response at 80dB which means their diagnosis from that test would have been 'profound hearing loss'. If they don't hear at 80, they won't hear anything quieter either. So this time we started with Max and he did hear at 80- very clear brain patterns. And he also heard in both ears at 60db as well! He could not hear anything below 60. If they tested me, I'd be able to hear at 50, 40 and 30db, as well as 60 and 80. They described 60 to me as the volume I probably talk at when teaching to my whole class. So some speech is at 60 dB but quite loud speech. At 60dB, they could hear themselves cry or squeal and probably laugh. When I say their name loudly they can hear it. Sometimes they can hear loud conversations. We think it's why they love my Dad because I'm pretty sure his inside voice is probably 60db! But they don't hear it loudly. Someone talking loudly probably sounds like whispering to them. And they probably can't hear their own coos or bables, which is why they are generally pretty quiet babies.

Addie's results were similar, except they couldn't get a wave at 60dB in her left ear. They did get one at 70dB which is above speech but loud sounds like alarm clocks and so forth. So she has a weaker ear but her right ear can hear what both of Max's ears can hear so in terms of treatment and overall diagnosis, their hearing is very similar. It looks like their diagnosis would be moderate hearing loss or moderate severe hearing loss depending on how many classifications are made.

And it is definitely good news that they can hear some things and we are happy the results were better than last time. We feared they would have profound hearing loss so moderate is definitely better. In terms of development though, they cannot hear speech clearly enough to really develop language. most speech they don't hear and that which is loud enough for them to hear would sound really quiet to them making it hard for them to learn what words mean. And because they cannot hear their own talking most of the time, their speech would not develop properly. So, they definitely need some help.

What help will work is hard to know. If they had profound loss, we would know they need cochlear implants. If they had severe loss, we would try aids but suspect they'd end up needing cochlear implants. If they had mild lost, we'd be pretty sure hearing aids would do the trick. But it's a bit of a debate with moderate loss. Hearing aids would amplify their hearing and definitely enable them to hear their environments, hear people talking and be aware of noise. They may not be able to make speech sound normal for them. There's this whole confusing speech banana thing that looks at the interface between volume and frequency. And different speech sounds sit differently on the banana. And hearing aids should enable them to hear that people are talking to them but may not pick up all sounds. For instance, the sounds 'f' and 'th' are really high on the speech banana so aids may not be able to pick these up for them. Which would be less of an issue if they were 10 year olds or adults who already have developed good speech and know what words mean. For babies, it may compromise their ability to understand and say all words. Especially with Addie's weaker ear. hearing 60db was really important for aids so the fact that she can in one ear but not the other may be enough or may not. And so we'll try hearing aids because surgery is a big deal (even for us who have had A LOT of surgeries!) and work with speech therapists and try and determine how effective they are. and give them some time with that. And if it doesn't work, we will get cochlear implants for them. And given the nature and likely cause of their hearing loss, they should be excellent candidates for those to be very effective. And we'll teach them baby sign so they can learn other communication skills as well.

As far as how we're feeling about all this, it's hard to say. There were no dramatic tears or breakdowns! I was able to talk really calmly and rationally with the doctors and I was very proud of that. I got a lot of good information. We were relieved that they heard something. I wouldn't say we were happy about the whole thing because accepting that your children have hearing loss and having to discuss the plans for dealing with it- which will be difficult- is not fun. It's sobering and sad and so it wasn't a happy or joyous experience. But it wasn't a traumatic and devastating one either. We're praising God for that which they can hear and thanking him for improved results. And we're just in the process of accepting and dealing with the loss that they do have.

Oh and in other news, Addie's first tooth broke through her gum yesterday- you can see little white poking out of her bottom gums. So we're excited about that. We all took turns feeling her little gums and getting her to smile so we could see it. We came home and enjoyed all the wonderful joys of parenting and cuddled and played with Max and Addie and laughed and smiled over Addie's tiny tooth. They had no idea we found out they have hearing loss- they were just as happy as can be, smiling away. They got to go to the hospital and not get blood drawn! They got to see people they knew! Addie visited Erin and saw Dr Jones (her doctor who took amazing care of her when she got sick in July)and Max saw Julie his favorite dialysis nurse. For all they knew it was a great day! So we followed their lead and smiled and laughed. Because despite all medical problems they have, they don't let it keep them from being blissfully happy and so neither will we.


This is a picture of the speech banana. The best way I can explain it is to find the line for 60db on the right side and everything under than line, Max and Addie can here. And everything above that line, they cannot. With hearing aids, we 'should' be able to get them up to everything around 40 or maybe even 30db.