Jonica - Audiology 2 with complete Bone Conduction results

Thurs 21st October - today we revisited Mater Audiology to attempt to complete Jonica's hearing profile; while we got lots of testing done at the last appt, we didn't get a full set of results so today the plan was to fill in the gaps. Unfortunately, in the few days leading up to today, Jonica has developed a very snuffly nose and initial readings indicate that her middle ears are not completely clear, which affects her hearing.

Our audiologist began by repeating some of last time's tests, just to confirm that things hadn't changed - always a good thing to do considering Jarrah's history! These results were mildly worse than last time so we decided to check her tympanometry (movement of the eardrum) which would give us an idea of the state of her middle ears. One side had eardrum movement but negative pressure, indicating a blocked Eustachian tube (drains the middle ear down the back of the throat), and the other side had no eardrum movement. Great. No real point continuing with air conduction testing, then...

We decided we could fill in the Bone Conduction results, since bone conduction bypasses the middle ear. Again, we checked last time's results first and they matched, so that was also good news! More good news is that technology has improved since we were here with Kaelen and they are now able to do bone conduction testing at different frequencies, previously unavailable - here are Jonica's bone conduction results:

(All have a margin of error of +/-10dB)

Bone conduction Right:

500Hz = 40dB

1kHz = 30dB

2kHz = 50dB or worse

4kHz = 50dB or worse

Bone conduction Left:

500Hz = 40dB

1kHz = 30dB

2kHz = 50dB or worse

4kHz = 50dB or worse

Tympanometry: showed middle ear dysfunction on both sides today

TEOAE: emissions absent (see entry from Kaelen's confirmation hearing test 2008 for explanation)

So, some good news here - Jonica's hearing loss appears to be mild in the low frequencies, sloping down to moderate or worse in the high frequencies. Bone conduction only tests up to 50dB, hence the "or worse" clause - her true functioning levels will be indicated when we can finish the air conduction tests after her little ears clear. But, we can say "mild"! This is cause for celebration in our house, as both Jarrah & Kaelen's losses begin at "moderate" and get worse, so for Jonica's to begin at mild is great, it means she can actually hear quite a bit of what's going on in our house, quite a lot of what i say to her at close range, it means we are definitely out of implant territory, and that in general her hearing loss is not as severe as her brothers'.

*Sigh*, it's nice to get some good news! Another test will be scheduled in 2-4weeks' time to complete the air conduction results, and we hope by then her middle ears have cleared completely.

Next appt: Friday 29th October, Jonica's initial Australian Hearing consultation

Jonica - Audiology 1

Wednesday 13th October 2010 - today was Jonica's first audiology appointment, having been referred following the hearing screens in hospital after she was born. Mum came with me which was nice, and took some photos...i'll see if i can post some so you can see what goes on during these tests.

Jonica was a good girl and slept beautifully for the entire test, so we got lots of good information. We still have to go back to complete the testing, but we got a really good idea of what we're dealing with.

I went into today preparing for the worst. We knew that we had to go into a third pregnancy prepared to have another hearing impaired baby, worst-case a profoundly deaf child, and both Keith & I had noticed that Jonica really didn't respond or startle to much. I think we had each coughed or sneezed while holding her and she hadn't jumped at all, so I was beginning to wonder if she had much hearing at all. I was doing alright until about half-way along the bus trip into town - then the anxiety of the unknown began to set in. What if she was profoundly deaf and needed cochlear implants? How much was she really hearing now, if anything? Suddenly those possibilities stared me straight in the face, and i'm thankful for the prayers of my friends for strength in that time.

Our audiologist turned out to be the same one who diagnosed Jarrah's loss 3 years ago! It was nice to see her again, although not under ideal circumstances...Jonica was already sound asleep so we got straight into testing. We completed click tests (air conduction, via a little headphone) on both sides, bone conduction on both sides (which bypasses the middle ear structures and passes sound straight to the cochlear via the skull), began some Tone Burst testing on the left side (testing different frequencies, high & mid & low sounds) and tympanometry (movement of the eardrum & middle ear pressure). These results form part of the picture, the rest will be completed at a future appointment.

It appears that Jonica has a mild-moderate loss bilaterally (both ears), which is *way* better than i was expecting. I'll post her complete results once we have them, but initial indications seem to be a sloping mild-moderate loss, between 40-60db. This is actually not quite as severe as Jarrah & Kaelen, and in my mind a cause for celebration! It seems she has quite a lot of residual hearing so she *should* actually be hearing quite a bit of what's going on. Such a sense of relief in not having to consider surgery for implants; it actually put a smile on my face to know that it seems her road will hopefully not be as hard as her brothers'... The tympanometry test showed good movement of her eardrums & no apparent blockages either in her middle ear or Eustachian tube, so these seems to be fairly reliable results.

After 1.5hrs of clicks and sitting extremely still, we were done for the day. Results will be finalised at the next appointment, although given the bone conduction results gained today we will be referred to Australian Hearing immediately. And we'll need to go see our trusty ENT again as he needs to give the OK for Jonica to be fitted with hearing aids. We signed forms at Yeerongpilly yesterday to begin Jonica's enrolment in the early intervention programme as we didn't expect today's results to contradict the newborn screens - she'll begin her sessions in 2011.

Here we go again...another bunch of extra appointments, but hopefully nothing we haven't done before...

Next appt: Thurs 21st Oct, Jonica's Audiology follow-up

Welcome, Jonica Arwyn!

OK, i'm a bit late with this...i've been busy!

On Thursday 30th Sept 2010, at 9:37am after only 5hrs of labour, we welcomed Jonica Arwyn Harbottle into our family. She weighed 3.69kg (8pd 3oz), was 49cm long and cried nicely very soon after birth :-)

We were visited by the Paediatric cardiologist that same evening, who took Jonica off to do an echo/ultrasound to check her heart situation. His words upon their return were, "Well, there's good news and good news!" Apparently he was entirely happy with what he saw, so happy that he didn't feel any follow-up was necessary. Hooray! One less complication!

On Friday we were visited by Healthy Hearing for a hearing screen. I was very up-front about my expectations for the test, ie. that i didn't expect Jonica to pass, and i think that surprised the Healthy Hearing person a bit. She in fact didn't pass the screen (called "Refer", cos it doesn't guarantee a problem) so a repeat test was scheduled for Sunday morning prior to discharge.

Sunday morning rolled around and the hearing screen was repeated. Jonica again didn't pass the screen, so we've been referred to Audiology and are waiting for call to arrange an appointment for a more in-depth test. I'll post about that test separately...

In the meantime, Jonica is doing very well - surpassed her birthweight by 7 days old and sleeps like a champion, even with 2 noisy brothers running up and down the hallway outside her room :-)

Walking like the Queen...

Not my usual style, but what i need to do for now. Why? Well, if you're on facebook & have been following my status you'll probably have a pretty good idea, but for those who aren't/haven't...

My first 2 pregnancies were "textbook"; flawless, no complications, just a few isolated contractions towards the end of Kaelen's (ie. post-36wks), nothing unexpected or out of the ordinary. This one was shaping up the same until about 5 weeks ago...

Really it started 7 weeks ago. I remember having a few "just-a-moment-i'll-be-with-you-in-a-second" contractions near the end of Kaelen's pregnancy, usually while pushing a trolley in the shops loaded with goods & a 2-yr-old, but by that time i was 36+weeks anyway, so i figured it was par for the course. What i didn't expect was to have one of those, out of the blue, sitting in the car, at 26.5weeks! Or a whole bunch more 5mins apart at 28.5weeks while at a dinner function, or another 1.5hrs-worth 2mins apart at 29.5weeks while at another dinner function...

Fortunately I'd had a Dr's appt right at 29weeks, so i described what had been going on. "Irritable uterus", he says - you really wanted to know about my uterus, didn't you? - "just take it easy, lots of fluids, if they're not regular don't worry just lie down & take some panadol. If they're regular for a long period of time, you must go to hospital & get checked." OK. So what happens when i lie down to be monitored in hospital at 29.5wks & they've been going every 2mins for the last 1.5hrs? They stop, of course...*sigh*, back home we go, although of course they start up again before we even get in the car...

So, i adjust my definition of "taking it easy", and we keep going. Things are manageable for a week or two, i have a few bad days & a few bad nights but nothing for more than an hour or so. Then approaches my "do-or-die" week, the week i knew would be the biggest, busiest, most testing week between the onset of all this & my due date. Monday, ok. Tuesday, having a few regularly-ish during the day but not for more than an hour. Wednesday, probably the biggest day of the week so far, having a few while teaching but too busy to time them, shattered by 8pm. Thursday, just made it through the day, not such a good night, nearly 2.5hrs worth but then they went away. Friday they start around 8am, still having some through the day, thankfully Nana & Grandad come & take K swimming, another hour or two at night...starting to get a little ouchy too.

Saturday, election day, we decide to go to Garden City as a family, got a few small errands to do in preparation for tomorrow's Student Concert, kids can play on the playground...we decide to be out for 3hrs max because of my "condition". We manage this, but still need to go vote later in the day. 4:45 they begin, 10mins apart but much more ouchy than before. I get dinner going, kids have a bath, a bit after 5 we go vote, back home for dinner, i go lie down to ward off contractions (every 3-5mins, they seem to settle right away), put kids to bed, me back in bed cos they're back on again. 8:45pm still happening, and getting harder to manage...we decide it's time to go get seen to. I really hope they don't stop as soon as we get there again...i mean, it would be good if they did stop, but i'd rather the medico's be able to see what's going on for real than just hear about what has happened and not be able to check it out properly.

About 9:15pm we arrive at the hospital, they strap me up to the monitors and the contractions keep going - every 2 minutes for a bit, then every 5, every 3 then every 7...regular but irregular at the same time. Midwife calls the Dr who's on for that weekend (not my usual Dr), we decide a course of drugs to attempt to halt the contractions & 2 steroid injections (!) to mature the baby's lungs a bit faster, just in case we need to deliver. Thankfully, election-counting is on TV, which helps pass the hours. By 10:30pm it's decided that i'll be staying in overnight (and we're cancelling the next day's Student Concert!), contractions are less intense and seem to be easing so Keith makes a dash home to grab me some clothes etc., and a bit after 12am he makes his delivery and returns home to relieve Nana of boy-minding. By about 1am they think to take me up to a ward, by the time we get there and settle me in and i have a few more contractions, it's nearly 2am before sleep overtakes...

6am I'm awakened by the midwife on duty for more drugs and observations; drugs every 6hrs, ob's every 4hrs, and thus begins the cycle of the next few days. On-duty Dr comes to see me, wants to keep me in overnight again to make sure things really settle & have me see my usual Dr the next day. OK, 2 nights, i can do that. A few rounds of minor squeezes through the day, but nothing like the previous night. Should i keep teaching this week? I guess that depends on when i get to go home...

Monday morning, i've had a shocking night, rounds of contractions jsut close enough to keep me awake :-s My usual Dr comes by; orders a scan to check on the growth of the baby, if everything's totally fine today then maybe, just *maybe*, i'll be allowed home tonight...but not til at least 4 or 5pm. Scan at 11am, mostly good...but she seems to spend an awfully long time examining the baby's heart - what's going on? Examination finished, sonographer says, "I'd just like to get another sonographer & the Dr, one of the valves in the heart looks just a little small; i can try to convince myself that it's ok but it just doesn't measure quite right."

Heart problems...?

Dr & senior sonographer arrive, they umm and ahh and prod and poke, and eventually decide it's best for me to return that afternoon when the Paediatric Cardiologist is in, for another scan.

Heart problems...?

The heart is structurally fine, they say, just the left side is a tiny bit smaller than the right and there are a couple of things we'd like him to check.

Heart problems...just for a second i'm overwhelmed by the thought, "my baby has heart problems!", but they reassure me that it's nothing major, they just want the Paed. Cardio to check it. Any plans for the rest of the day? How about 3:30-4pm? I'm not going anywhere, i say - and it seems i won't be going home tonight either...

3:45pm another scan with senior sonographer & Paed. Cardio. They seem to have a bit of trouble tracing where things go in some cases, which bit joins on to which. Eventually they get it figured out, do all their measurements and then, once they've finished and i make a quick trip to the bathroom, they draw me a pretty picture of a normal heart vs. our baby's heart. I must say i'm impressed by the speed and accuracy of the drawings...they must have done that before!

3 points of interest, 2 should be irrelevant after birth as they are things which normally close over after birth but appear just a little unusual in our baby. The 3rd one is a narrowing of the aorta as it takes blood off to supply internal organs. This will need to be monitored after birth; in 50% of cases it is of no consequence, and in 50% of cases it requires corrective surgery. No way of knowing at this stage what it will do, only time will tell...

Heart problems...potential post-natal heart surgery. I know thousands of people have been through that and survived (one of my good friends included), you just don't imagine it visiting your house. Keith brings the kids in for a visit near dinner time & my parents arrive too - which is great, i get to explain everything to all of them and we are all happier having reviewed the reports. Nothing we can do right now, just wait... Monday night i send on the phone cancelling my students for the rest of the term.

Tuesday i spend waiting for my Dr to arrive to see if i can go home. Finally, 3:30pm, he comes...and yes i can go home, and although i'm not officially on bed-rest and not needing ongoing drugs, he says i "need to do there what you did here"...in other words, next to nothing! I arrive home feeling amazingly fragile...was i really this bad last week & just didn't notice? We get through dinner, get the kids into bed & by then i'm ready to lie down again - i've just been out of bed for the longest stretch of time in the last 3 days, about 3hrs!

So here i am, walking like the Queen, trying very hard to be a good girl and do as little as possible while taking care of 2 small kids. People have been so generous, offering lots of help with kids & housework & meals - special thanks must go to my heart-surgery-surviving friend for coming by early in the morning & hanging washing for us (and then bringing it in for us in the afternoon too!), and to my MOPS Mums & another new friend for the offer of meals - these things are all greatly appreciated while we just try to keep this baby inside for just a few more weeks.

And thanks be to God for my irritable uterus, without which we may never have known about our little one's heart situation, potentially until it was too late.

"Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness...Though He brings grief, He will show compassion, so great is His unfailing love. For He does not willingly bring affliction or grief to the children of men." Lamentations 3:22-23, 32-33

ENT for Jarrah - Tues 10th Aug

What a lovely day for a train trip...raining! Fortunately we didn't get too wet, the rain held off for the 3 hours or so that we were in and en route to & from the city...

We haven't seen our ENT for just over 12 months now, which in ways is a good thing...he's a nice guy but we only go to see him when things aren't going well, so it's nothing personal but we'd prefer to see him as infrequently as possible, and 12 months between visits is a record for us! :-)

After looking over test results, hearing what's been going on these last 6 weeks and checking J's ears & throat, ENT says it seems J's picked up an upper respiratory tract bug (of which there seem to be a plethora this year!) which has inflamed the lining of his ears/nose/throat, hence the juicy cough, fluid behind right eardrum & discharge from left ear. We've had one round of antibiotics from the GP which seemed to help a little but didn't really knock it all off, so we've got the big guns this time - a stronger, dual action antibiotic, drops for the ear AND an inhaler for the cough! Mate, if this doesn't get rid of this bug, almost nothing will!

For now ENT is happy for the grommet to stay put, despite it having been there for 2yrs - it's still fulfilling its function by preventing the left middle ear from becoming blocked, so let's let it continue to do that. We have J's next Aus Hearing checkup in November, so the plan is to leave things as they are for now and see if the right ear has drained by then...

We then enjoyed morning tea at McDonald's (pancakes!) before the train ride home. Both boys were very good despite being cooped up in a train for 35mins each way on a rainy day...they loved looking out the window to see the other tracks, and watching other trains go past. Kaelen is much more aware of the wider world now than he was 12 months ago of course, so was just absorbing everything wherever we went.

Two exciting (?) things from Mummy's point of view about today's appointment & prescriptions: because we've passed our Medicare Safety Net threshold the ENT appt only cost us $8 (less than my return train ticket!), and, because J has a concession card for his hearing, the antibiotics only cost us $5 (that's less than the McDonald's pancakes & juice)! Sadly, the eardrops are a private prescriptions (not on PBS) so the concession card doesn't cover/affect them...but one out of two ain't bad!

Next appt: J's Aus Hearing checkup - Wed 10th November

Aus Hearing checkup - 3rd Aug 2010

Today was Kaelen's re-scheduled Australian Hearing checkup - last time we were there (May 2010) his little ears were a bit blocked up and were affecting his test results. He needed 6-8wks for this clear but the soonest appointment we could get was 12wks...

Results were much better today; although his Eustachian tubes (the ones which connect the middle ear to the throat) are apparently still/again blocked, they don't seem to be affecting his hearing as his results were within margin of error of previous tests. This is a good thing! It means we don't have to see the ENT about his middle ears...

Jarrah, on the other hand, just has one middle ear issue after another. Even though today's appointment was not for him, the audio's checked his tympanometry anyway (movement of ear drum, volume of ear space & pressure behind ear drum). His left ear still has a grommet and has been discharging on and off for nearly 5 weeks, and i've noticed a deterioration in his listening lately...how much of that is behavioural due to being unwell and how much is simply "i can't hear you" is a bit hard to tell. Measurements indicate fluid built up behind the right eardrum again, and that the grommet is not open at the moment - hardly surprising considering what's coming out of there! Fortunately we're off to the ENT next week for J anyway, so it was good to have some fresh results to take with us. Now i guess the question is...what to do?

Next appt: Tues 10th Aug - ENT for J

Aus Hearing 7th July 2010

Quick visit today - only 30mins instead of the usual 2hrs!

Today was the appointment to redo J's earmoulds which were *hopelessly* made last time. I decided to get K's other one re-done too, as it has got worse in the last 4 weeks (had one re-done about 4wks ago). Hopefully they'll get the order right this time...

J's had quite a bit of discharge from his left ear lately, which means he hasn't been able to wear that hearing aid for nearly 10 days. The grommet is still there and his middle ear & eustachian tube appear clear according to the measurements taken as Aus Hearing, so that's a good thing. K's still a little blocked, but we have another 4wks before his next appt, so hopefully he'll clear in that time.

So now we wait for the moulds to come...

Next appt: Tues 3rd Aug - K @ Aus Hearing