Four Months Old!

Just over a week after getting his hearing aids O turned four months old. 

Leading up to getting the hearing aids we had run through a list of developmental milestones with our APSEA rep. The two categories we focused on were 0-3 months and 3-6 months. 

In the first he was hitting every single milestone - except those that related to language development.

In the second he was hitting many as well - except again any that related to or rely on language development.  

In the nine days since getting the hearing aids O has been developing by leaps and bounds. 

We're hearing coo's & babbles we never heard before. He's experimenting with different sounds, volume, and random little noises. He's more engaged with certain toys that held no appeal in the past. He will look for noises. Startling to sounds that didn't startle him before. Beginning to take turns when "speaking" 

It's amazing what two little pieces of plastic & technology can do for such a tiny person. 

The First Week

During the lead up to hearing aids I kept reminding myself that it would be a completely new experience for O. He would be experiencing things that - to him - never existed before.

It was easy to accept that. But it wasn't easy to live that. 

The first week with his hearing aids was HARD. 

My sweet happy baby would have, what we call in our house, a nuclear meltdown two to three times each day. He would scream and cry and fuss in ways he never had before. I know that it was a result of the over-stimulation from a very new and unique experience, but it was so very challenging to watch and handle. 

By around 5pm every day we would have to take the hearing aids out. I know the goal is for him to wear them every waking hour, but sometimes it's just not feasible. So out they would come. And then he would cuddle for about 20 minutes, then nap, and once he woke up we could put them back in to finish the day. 

That face. Those tears. Heartbreaking.

Wash. Rinse. Repeat. 

Hearing Aids Are In!

His reaction was to suddenly calm completely, and stare wide-eyed at everyone talking. He's definitely got a lot of new experiences coming!

Making Hearing Aids Cool

Once the initial shell shock wore off, and we started to get all of the logistics under control, I thought I'd look online for things to spice up hearing aids for kids. So, off the Etsy I went - and I was not disappointed! Here are some of the awesome accessories for kids to keep things fun!

Pilot Caps

These are not only cool, but super useful for very young kids. Lightweight caps that cover the ears, and tie under the chin, to keep them from taking them out. Since O isn't even 4 months old yet, it's not really easy to explain why he needs to keep them in. I definitely think we'll need to get a couple of them!

Coloured Tubes

Replacement coloured tubes! These tubes connect the device to the ear mold (the foam bit that sits in the ear). Inexpensive ways to brighten up the hearing aids, and are easy to swap out!

Tube Twists

Colourful twists that wrap around the tube, and come in multi-colour, sparkly, and bright colours! Again, easy to swap out to keep things fun, and even available in seasonal colours like black/orange for Halloween, and green/red for Christmas!

Hearing Aid Clips

These clips have bands to wrap around the hearing aids, and fun clips to attach to the back of the shirt. This way, they won't get lost on the playground!

The internet is going to be a dangerously tempting place...

And then there was a new audiologist!

What a difference a day makes. Or in this case a week.

I called the Audiology Department head on a Thursday, explained my concerns, and was wholly validated. We discussed my concerns, and also the fact she was leaving town for a conference and I should expect to hear back by mid-week. The following Tuesday I heard back from her confirming we had a new audiologist and who it would be.

There is a downside to O's new audiologist, but it is relatively minor. She only ever works Thursdays & Fridays. I can handle that.

I decided that, since she was just taking on our case, I would wait and call Monday morning if I hadn't heard anything. I didn't have to wait. She called me before 10am on Thursday. One week after my initial conversation with the department head.

The conversation with O's audiologist was great. Amazing even.

She confirmed our hearing aid order & color, expressed disappointment over the fact she wouldn't be able to see us the next day and set an appointment for the following Thursday to get O's hearing aids in.

The delay was completely out of her hands - the ear molds hadn't been cured yet, and wouldn't be arriving until Monday. She had just called the company to confirm.

But wait, there's more!

She went over payment (because $$$$), reminded me to bring in certain paperwork, asked if she would be able to forward our information to an organization that routinely helps kids with hearing aids, and let me know what to expect.

She also told me that she wants us to have a 'team meeting' shortly after O gets fitted, if not that morning, with APSEA & our SLP as well. Amazing.

Needless to say I am so, so relieved.

And although the switch to her meant a delay of two days from the original hearing aid appointment, I couldn't be happier with the decision.

Enough is Enough

They say first impressions are everything. I should have went with my gut.

Well, what comes before that? I mean really, because before I had ever even met O's audiologist I didn't really care for them. 

Now, that may be a little harsh to say, but it's true. You see, they called me on a particularly busy morning. Every morning is busy when you have a two month old, especially so when you're also working half days, but I digress..  

My phone rang with the audiologist I had never yet met calling to reschedule an appointment that had been cancelled on me at the last minute (and I do mean last minute when I had been up for hours sleep depriving a baby for said appointment..)

The audiologist was implying that my child was an inconvenience and made me feel bad that they would need to cancel other clients to "fit us in" when in reality it was their fault my previous appointment was cancelled. And also knowing full well that babies (and young children) receive priority as per the departments mandate. 

Let's be real honest here for a minute... you cancelled on me, and are now making me feel bad that it inconveniences you and possibly some old man, since I know other children can't and won't be bumped? I don't give a flying efffff.

How anyone can say that seeing this cute little guy is an inconvenience is beyond me.

It took three more appointments and two more phone calls where I was made to feel like an inconvenience before I finally got up the guts and courage to become annoying and call the department head to request a new audiologist.

It was a decision I didn't come to lightly. At first I wanted to wait until after we had the hearing aids, and were on to routine appointments, but then it became clear that regardless of any potential delay it had to be done.

On a Thursday I called and spoke with the department head. By the following Tuesday we had a new audiologist.

Scary Buying Decisions

Since O's diagnosis, we've had a lot of questions. What caused it? Could it get worse? Can it be fixed? What therapies will be needed? How can we best help? Fortunately, our rep from APSEA has been incredible in helping to answer a lot of these, and more, to help us feel like it's not completely overwhelming.

Once coming to terms with all of the basics, however, the biggest question is - what device will he need? The answer from APSEA was "your audiologist knows all about the current devices and will help you pick the one he'll need." So, we asked our audiologist.

"Well, there's option A at $550 per ear, or option B at $1,200 per ear. It has a few more features."

That's about it. So, I look up the devices on the manufacturer's website to compare the two. As far as I can tell, the features added in B wouldn't really apply, as they are controlled manually on the fly by the wearer to make things "a bit clearer" in very specific situations. Not really something an infant/toddler is going to do. So, we ask if we understand that correctly.

"You're right, he won't need those extras. Actually, he won't need the extras in option A either, we turn them off for children. Here's option C, it's $400 per ear, and will have everything you need. Except that A comes with a free gift if you want that."

Well, if they're functionally identical for children, of course we want option C. And no need to pay an extra $300 total for a free gift. So, we order, and let our APSEA rep know of our decision. And this is where it gets interesting.

She asks us if we feel confident in our decision. Having never bought hearing aids, and the amount of uncertainty we got from our audiologist, of course we answered that we weren't entirely confident. Thankfully, she offered to get us a second opinion from an audiologist she often works with.

The next morning we get the second opinion - option C is absolutely not acceptable for our little guy. While it would be functional, the extra features in option A are, in fact, heavily used in infants and toddlers. So, yes, they will cost $300 extra in total, but will also save us large amounts of frustration that could likely lead us to buying them anyway 6 or 12 months down the road.

At this point, we both feel completely let down by the audiologist we've worked with so far. While his testing and diagnosis has been extremely thorough, it has become clear that he has very little experience with children and parents. We are in a vulnerable position, and need guidance from the professionals.

All I have to say at this point is - I am incredibly grateful for our rep at APSEA for asking the simple questions like "do you feel confident in your decision", and for being willing to fight for us until we do.

The cost of better hearing.

I'm clearly in the wrong profession.

The audiologist gives me some price points.. $700, $1000, $1500.. per ear. PER EAR. How many ears does my kid have again?

Yikes.

Then he breaks it down. The $700 model, with the APSEA discount, would actually be $522. PER EAR.

And then ear moulds. $46 each. FORTY SIX. PER EAR. And while he's growing they'll be replaced every few months.

I'm clearly in the wrong profession. Who knew little pieces of plastic could cost so much. I should go in to making those for a living.

The audiologist calls me later. There's another option, less bells and whistles (which are useless and wouldn't be used anyways). This one is $382 per ear. We'll take it.

Decisions. Decisions.

The audiologist shows me this and tells me to pick a color. 

Since the one thing I was certain of is that we wanted Phonak brand I'm okay with my choices. 

My requirements beyond the brand  are straight forward: something durable. These are going to be used by a baby. It will be wet. It will be dropped. It will be well used. It will be... abused.

Bells and whistles? Not needed.

Model? No clue. 

But I like to ask questions, so I start asking about prices. And that's when he finally gives me some details and model choices.  Since John isn't with me I say I will call later and let him know.

We settle on the Phonak Bolero M13 Q 30. There's not as many bells and whistles. Features that wouldn't be used anyways. Still, they're $382 each. Sadly, none of the colours the audiologist showed me are in this basic model. boo. 

Ear Impressions.

First ear impressions were done today. And I was flying solo.

The process is like this: they stick a super small piece of foam on a string into the ear canal. It's basically like an ear tampon. Anyway, they stick that into the ear, push it in using a special tool, check that it's in far enough and the squeeze in the impression goo. Once that's in it has to set for about seven minutes or so - meanwhile keeping baby's hand out of it - and then it can be removed.

Since I knew that the audiologist I'm not a fan of wanted to try for some frequencies again today I kept O hungry and sleep deprived. Since he was pretty chill when we got there I decided to save the bottle and let him try. I tucked O's arms into the moby wrap I was wearing him in and snuggled him close while the audiologist started.

Annnnd then a major meltdown happened, because who likes having stuff shoved into their ear?

Luckily my hungry little one settled right down for his bottle and the first round of goo inserted.

Then we waited. And the audiologist complained that he didn't think it was in far enough. And we waited some more. And he complained some more about thinking he would need to redo it. And his assistant told him to think happy thoughts. And we waited some more. And the finally it came out and... It was good!

Time for ear number two. I had saved some of the bottle so as soon as the meltdown started I gave him the bottle and he settled. Tampon inserted. Goo inserted. 

Sleeping while the goo sets.

Wait. Complain. Wait. Remove.

And he wasn't happy with it. Insert another tampon. Try to settle the baby. Adjust the tampon. Insert the goo. Wait. Wait. Remove. This time it was good.

Thankfully.

We then go to repeat the Tymps test. Right ear was good, left ear showed some possible fluid.

Since at this point O was still sleeping the audiologist brought us to a third room and again started to try testing a few frequencies he wanted to "be sure of".

All of the electrode things were attached.  The ear pieces inserted.

But my sweet boy had other plans. About 20 minutes in he woke up with a big smile, and that was it.

Our SLP came in to chat at this point and that was it.

The takeaway from this appointment: always bring a moby wrap.

Normal.

I just want so badly for my son to be normal.

But that's such an arbitrary word. What is normal?

This hearing loss, and its challenges, and its triumphs will be normal for O. And by extension normal for us. He won't know any other reality because this will be his reality. He's too young to remember a life before, before hearing aids and audiologists, before speech language therapy and regular hearing tests. This will be normal. It will become normal. For him. For us.

And I will try to bring that normal to the people we meet. To the strangers we encounter. To our families. To our friends.

Angry. Upset. Frustrated. Hurt.

Angry. Upset. Frustrated. Hurt.

These are all feelings that I'm feeling right now. Are they fair to the people I'm feeling them towards? Not at all. But I feel them none the less.

I'm angry at the people who get pregnant by accident, and have a perfectly healthy child.

I'm frustrated by the people who neglect themselves and their bodies while pregnant, and have a perfectly healthy child.

I'm upset that I did my best to do all of the right things, the wise choices, the best I could possibly do... and it wasn't good enough. Somewhere along the way something happened. A missing puzzle piece, and that hurts.

It hurts that I spend my nights wondering. Thinking. Blaming. Did that glass of wine I had when I was about two weeks pregnant cause O's hearing loss? Did I eat too much fish? Not enough fish? Did I take my prenatal vitamins every day? Did I have enough folic acid? Did the fact my water broke first and I was in labour for 22 hours cause this? Was it his brief stay in the NICU? Is it because I couldn't breastfeed? on, and on, and on.

There are so many what if's, maybe's, should have's.

And it makes me angry. Angry that we may never know where this blip came from.

I love my son, more than words can say. I don't love him any less because of this. It is in no way his fault. But I think maybe, if truth be told, I love myself and my body a little less right now. And that makes me angry too.

Scared.

You can put many other labels on what I'm feeling if you'd like. Worry. Anxiousness. Concern. It all boils down to fear.

I would be lying if I said I wasn't scared.

Scared of what the future holds for O. Scared about how his peers will treat him. Scared about how adults who don't know him will respond. Scared about the possibility that family will treat him differently. Scared that I will treat him differently. Scared about the challenges he will face. Scared because I can't fix this for him. Scared that people will treat me differently. Scared that people will think it was something I did, something my husband did.

How can I not worry about what the future holds for my sweet little boy.

Shell Shock.

The audiologist just gave us the news that no parent wants to hear: our child has moderate-severe hearing loss in both ears.

The next few minutes, or were they hours, pass in a blur of information.

He will need hearing aids. Is an excellent candidate for hearing aids. Likely won't have 'deaf speech' if we get treatment started as soon as possible. Will need hours of speech therapy. Someone from a foundation will be calling. We will need a speech language pathologist. It could worsen. It might not worsen. We will be referred to an ENT [ear nose throat specialist]. The audiologists do the fittings for hearing aids.

I am in shell shock.

I know deep down inside of me that this is happening. But part of me is in denial. Another part of me is thankful that this is the only issue. I know that he is here with us. He is happy. He appears to be otherwise healthy. We are lucky. We can do this.

But still I am in shell shock. Denial.

The cute little outfit I just had to show our SLP

The one good thing I remember from the time following his diagnosis is the speech language pathologist we had already worked with. Whom I had passed in the hall minutes before, quickly stopping to show her how big O had gotten and his cute little skeleton outfit, and had given the thumbs down to when she asked how the testing was going because I still couldn't speak it. She came in the room, and took our case.

Stole it might be a better word.

I'm pretty sure the audiologist I'm not a fan of was planning to have us work with a different SLP. But she came in and said, in no uncertain terms, she was going to be working with O.

I might still have been shell shocked at that point. But next time I see her I will be letter her know how grateful I am for that.

As I had spent the morning venting on twitter about the lack of bedside manner from the audiologist I took a quick minute to post an update. There was an outpouring of support, of DM's, of kind words. They helped alleviate the shell shock.

Little by little I started to come around. We can do this and we will do this because we must do this. We will do everything and anything we can to see to it O has every available opportunity. That he knows how loved he is, and how awesome he is, and how normal he is.

A Diagnosis - part 2

I was thrilled when the audiologist called me later that same day to say she could get us in within two weeks.

We would have to sleep deprive O in order to make sure he would sleep through the test, but she assured me that we would have whatever time needed to get him to sleep once we got there.

The morning of the appointment came, I had a cranky baby in my arms, and my phone rang. It was the receptionist for the audiology dept. calling to cancel as one of the audiologists were out sick. I would hear back, she said, with a new appointment.

About a week later that finally happened. A new audiologist I hadn't dealt with called to schedule a time. He seemed flustered and short, deciding that he would bring us back without a second audiologist in a week's time.

Again I sleep deprived O and got ready for the appointment. Since he is now also solely bottle fed I made sure he was hungry and tired by the time we left. When arrived we went to the waiting room. When this new audiologist came to get us he decided to again run a tympanometry. No real surprise but O's ear had flip flopped again - one was showing decent movement, the other was not.

We then went in to the room where he was to perform the test. O was restless and hungry, but this audiologist didn't seem to care. He went about everything else, so finally I just took out the bottle and started to feed O.

The testing took the better part of two hours, during which time O made a valiant effort to stay asleep in my arms. Have you ever held a baby for two hours trying to be as still as possible? That shit sucks.

But I digress. After two hours we were no better off than we had been. Since he wasn't very open or talkative with us before or during we had no idea what was really happening. It turns out the audiologist ran a more specific version of the ABR instead of the bone vibration test we had been told would be performed. He was more or less confident in the results (which didn't look very good) but he wanted us to come back, again, to do the bone vibration test.

The very next week I again sleep deprived my baby. Again he ran a tympanometry test and this time there was decent movement in both ears. The second audiologist was a bit better, but barely, when it came to expressing what was happening during the test. I volun-told my husband that it was his turn to hold O during the test.

Sleep deprived and deceptively happy - that only lasted a minute

Nearly three hours later we had the results: O has moderate-severe hearing loss in both ears.

A Diagnosis - part 1

When you're about to leave the hospital, after just having your sweet baby they do a simple screening to check for possible hearing problems. They stick these little headphones in your child's ear and bounce a small sound-wave in. The test is checking for the echo. If an echo is picked up, your baby passes. If not, they are referred, which means further testing is needed.

O was born during a particularly busy period for the maternity ward. The day I went in I was alone in Labour & Delivery. But by the time I had given birth there had been four more babies born. Three more followed shortly after.

My sweet squishy boy shortly after birth

It should be no surprise then that our nurse was run completely off of her feet. And visibly pregnant.  When she came to do the first attempt we mentioned our concern over O being slightly congested. When he referred she brushed it off, as she said three other babies that morning had referred, and decided she would try again in a little while.

She came back four or so hours later, and tried again. Again he referred. "It's no big deal" she said, "babies quite often refer due to fluid from being in the womb, and he's being quite squrimy. They'll bring you back in a month to try again."

That was fine, we finally got our discharge, and we left.

I won't go in to full details on the whirlwind that was our first few weeks at home, but suffice to say it entailed lots of missing sleep, lots of time trying to get O to nurse, two ER trips [one for me as my legs ballooned and one for O because my little squirmer tore his umbilical cord], several trips to the breastfeeding clinic, a  visit to our doctor, and appointments with a speech language pathologist because O was having issues with his latch.

It was during a follow up visit with the SLP around the one month mark that I mentioned we had never heard back with an appointment for the hearing test. She decided since we were there already and it was sort of quiet to quickly grab the main assistant in the audiology dept.

Not more than five minutes later she came to run the test. Again O was fairly squirmy and kept referring. The assistant decided to bring us back again in a week to do an ABR [Auditory Brainstem Response]. On our way out she had an audiologist quickly run a tympanometry to check for any fluid in his ears. This is a simple test, again with headphone looking things inserted into the ear to push air in checking for proper eardrum movement. One was showing acceptable movement, one was not.

The next week we were back again, with a sleepy cranky baby.

On our way in for the ABR they decided they wanted to run another tympanometry to check for any fluid in his ears. This time the opposite ear had less than ideal movement. It came as no surprise, when forty-five minutes later the results from the ABR were again referred.

An audiologist came in and talked to us about it. She seemed fairly positive and so I remained positive as well. She told us they would like to do a bone vibration test, essentially bypassing O's  middle ear to check for hearing loss. This test, she said, requires two audiologists so may be trickier to book. They would do their best to get us in as soon as possible.