Family have all been fine with the news of his deafness.
They all seemed to deal with it in there own little ways. For instance, after my call to my mum she spent the night researching childhood deafness, found us this superb charity NDCS and sent the forms off for us to attend their newly identified weekend. My mum and sister also enrolled onto a basic sign language course - bless them!
My mother in law on the other hand, just cried all the time, found it beneficial to talk to her sister and partner about her feelings. Even to this day, she doesn't like him attending deaf groups, or the word 'disability', because she doesn't see him like that. But all the same, she adores him, just doesn't seem to wholeheartedly accept the deafness, use of aids, assistance from SALT etc.. Usually says, "he's only mild, he doesn't need to go there, or see her" ...she's just protective I guess
We get the questions:
"So what can he hear?"... All the time, even a couple of months ago, I got asked that question. Usually I'm just happy to talk about it non stop, but other times.. Especially with people who are aware of Luckys deafness from the start.. I just want to scream "he wears aids to hear everything! Just talk and play with him like any other child!!!" how many times, do they have to ask the same question!
I found friends reactions slightly different, you may have experienced the same thing?
We are texting / emailing / whatsapp etc, and I bring up about Lucky wearing aids or his deafness for the first time. All of a sudden the conversion goes dead.. Nothing.
I found this hard initially, because I just didn't know what they were thinking!!
Ugh.. It's just happened with me posting a picture on Facebook of lucky signing, and I got a message from a very good friend, asking whether he had speech or language delay as to why, I needed to sign with him. I explained, then - Silence! Ugh... She's posted a status so I know she's on Facebook. Why not just reply to me..!
What do they think I'm thinking or doing??! What do THEY think..
Friday, 9 March 2012
Thursday, 8 March 2012
Glue Ear & Grommets Operation For A Deaf Child
Lucky was fitted with aids in the August and this coincided with him also starting nursery.
He seemed to pick up every bug going!
His nose was constantly streaming, he was forever poorly.
Up until this point we could communicate with him without his aids; whose early mornings before I had woken up enough to reach for his aids, I'd be able to speak to him. In the bath we were able to talk to him, with him responding.
However by October I realised he stopped hearing me in the mornings.
"good morning Lucky" ignored, he wouldn't even turn
"give mummy a kiss" nothing, no acknowledgment
I raised my voice "Lucky" "LUCKY" "LUUCKKKY!!!!" nothing!
My heart stopped, his hearing must have got worse!!
I would quickly scramble for his aids, so he could hear me.
...what's happened to him??
..will he end up with a profound hearing lost??
I spoke to my ToD at deaf group and she said its likely to be glue ear.
I called to the hearing assessment unit and asked for another test ASAP
Three gruelling week wait, the ARB test confirmed he had glue ear but his nerves was still responding to a mild-moderate level *phew* it's not getting worse.. It's just temporary, I hope.
He was tested in December and the glue ear was still there so we went for grommets.
He was nil by mouth from midnight but as usual hospital operations were running late, so we wasn't seen till 11am
I took him round to theatre and they used a sedative via a mask. I was told to lay him on the bed, and 'reassured' by the two nurses to not worry he will fight and get upset but he wont remember a thing about this.. Yea, right but I will!
They held arms and legs down whilst I cover his face with this mask.. It was horrible, I thought it would be a lot quicker than that.. Seemed to feel like I was there forever (more than likely only a minute or two long).
They said to look at his pupils dilating, this showed it was working and he began to stop resisting.. Then his body went limp!
I was ushered out and remember looking back on poor boy :(
I hate the vulnerability, all the testing, I hate the fact he has to go through this when other babies don't have to!
We was told at the hearing assessment unit that the operation was only a 10min procedure.
When booking in the nurse said it will 30-40mins
Over an hour later I finally get called that he's come around.
Slightly annoyed she didn't come to get me before he came round, like she suggested she would do.
He was in a right state. He seemed out of it, sobbing his heart out. Crying for a male nurse who had clearly been there to comfort him on waking. He was clutching hold of him for dear life.
Blood oozing from his ears, I was reassured that it was normal and bilateral grommets were fitted.
I took him round to the ward to have something to eat and drink.
Whilst snuggled on my lap, I asked him "Lucky touch your head" and he did. I snuggled him closer and elated that he could hear me again without his aids..
He seemed to pick up every bug going!
His nose was constantly streaming, he was forever poorly.
Up until this point we could communicate with him without his aids; whose early mornings before I had woken up enough to reach for his aids, I'd be able to speak to him. In the bath we were able to talk to him, with him responding.
However by October I realised he stopped hearing me in the mornings.
"good morning Lucky" ignored, he wouldn't even turn
"give mummy a kiss" nothing, no acknowledgment
I raised my voice "Lucky" "LUCKY" "LUUCKKKY!!!!" nothing!
My heart stopped, his hearing must have got worse!!
I would quickly scramble for his aids, so he could hear me.
...what's happened to him??
..will he end up with a profound hearing lost??
I spoke to my ToD at deaf group and she said its likely to be glue ear.
I called to the hearing assessment unit and asked for another test ASAP
Three gruelling week wait, the ARB test confirmed he had glue ear but his nerves was still responding to a mild-moderate level *phew* it's not getting worse.. It's just temporary, I hope.
He was tested in December and the glue ear was still there so we went for grommets.
He was nil by mouth from midnight but as usual hospital operations were running late, so we wasn't seen till 11am
I took him round to theatre and they used a sedative via a mask. I was told to lay him on the bed, and 'reassured' by the two nurses to not worry he will fight and get upset but he wont remember a thing about this.. Yea, right but I will!
They held arms and legs down whilst I cover his face with this mask.. It was horrible, I thought it would be a lot quicker than that.. Seemed to feel like I was there forever (more than likely only a minute or two long).
They said to look at his pupils dilating, this showed it was working and he began to stop resisting.. Then his body went limp!
I was ushered out and remember looking back on poor boy :(
I hate the vulnerability, all the testing, I hate the fact he has to go through this when other babies don't have to!
We was told at the hearing assessment unit that the operation was only a 10min procedure.
When booking in the nurse said it will 30-40mins
Over an hour later I finally get called that he's come around.
Slightly annoyed she didn't come to get me before he came round, like she suggested she would do.
He was in a right state. He seemed out of it, sobbing his heart out. Crying for a male nurse who had clearly been there to comfort him on waking. He was clutching hold of him for dear life.
Blood oozing from his ears, I was reassured that it was normal and bilateral grommets were fitted.
I took him round to the ward to have something to eat and drink.
Whilst snuggled on my lap, I asked him "Lucky touch your head" and he did. I snuggled him closer and elated that he could hear me again without his aids..
Sunday, 4 March 2012
Newborn Screening for Baby Deafness - Finding Out My Son Is Deaf
Lucky is my first baby, so the time in hospital was a bit of a blur!
I have a blood clotting disorder, so I went to the Consultants at 39+4wks to discuss how it would affect my labour.
Dan didn't wait with me for the appointment as the hospital are notorious for lengthy appointments and Dan isnt the most patient man I know! So he dropped me off and went back home.
The consultant discussed the blood clotting and gave me a prescription for some blood thinning injections and said that I'd need an appointment to review my disorder in a couple of months time.
And that was that! Until he glanced at my blood pressure results and notices I was showing ++ protein in my urine.
He decided to measure me and do an internal examination. I measured 34wks, which was significantly small. So I went for an immediate scan to confirm this. The scan showed there was very little fluid around the baby and there was particles in the fluid that was left..
I was immediately marched over to the labour suite and frantically texted Dan to grab my half packed bag!
I was rigged up to the monitors to check Luckys heart rate and within 30mins it had dipped significantly. Within moments my clothing was being ripped off me and I was signing for a c section!
Thankfully, whilst they were preparing me for threatre Luckys heart rate went back to normal. 5hrs later I delivered him. A few moments later he needed resuscitating - all was well in the end.
The following morning we had the midwife come round the ward and showed us how to bathe him - cue crying! Afterwards the doctor did his physical checks and all was well. Early afternoon he had his first hearing test - not responding.
- Must have had water in his ears from the bath that morning
- Fluid in his ears from the delivery
"Someone will retest him in the morning"
As promised another lady comes around to repeat the tests. Once again she can't detect any response using the headphones, do uses the arb. I can tell this testing is going on for a lot longer than expected or what's usual!! She tells me that there are a few other babies on the ward that need retesting and it's completely normal. But couldn't give two hoots about anyone else! So she continues, detecting some sounds (high frequency). I can't take much more of this, I'm tired from the breastfeeding ALL night, overwhelmed, annoyed Dan hasn't arrived, baby blues..I disappear to the toilet and just cry! I realise that I have to return to the lady, and look in the mirror to see a blood-shot-tear-stained eyes, as much as I try to clear the reddening, I can't! I return, I know she can tell I was crying, so I try to not make eye contact, busy myself with my hospital bag and clearing up. We don't talk. She just stands there with this monitor repeating these tests, over and over and over again.
I just want her to leave him ALONE!!
Just stop touching him, fiddling with the sensors..
Thankfully she finished.
Says she'll return with some information and a date for the retest.
She does.. It's next week.
Finally alone, I close the curtain, pick Lucky out of the crib and feed him..
I never for one second did I think he was deaf, just felt vulnerable and emotional that my son didn't pass this test.
Later that evening I pick up the wad of leaflets and booklets she gave me.
"four babies are born deaf every day"
No way can my son be deaf with those statistics! I shoved the papers away in my bag and forgot about them.
It took 2 months of testing. Felt like we was there every week! Keep asking whether they are picking up on any sounds, which the answer was yes! So he's not deaf, right? He can hear! Kept hearing about "glue ear" "congestion" "fluid in his ear" "mildly deaf" so there was hope??
10th January nearly 2mths old, we are at yet another test. This time we got told to wait in reception... They finally have enough information tell us about all these tests they have been doing!!
Sat down, another man whom I've never meet before enters, all very smiley and cheerful! So he explains the last 2mths and they have a conclusion!
"....feel Lucky would benefit from some amplification. So he can hear you"...
WHAT??!! My son can't hear me speak...
He waffles on, about hearing aids and how great they look, and we can have coloured moulds - football teams - ....
What's he drowning on about?? I don't care about coloured moulds, football teams..
I just cradle my baby and break down in tears. I just want him to SHUT UP! I don't want to hear him talk anymore.
I get handed some tissue, and hear him whitter on about social services, teachers, speech and language therapist, and needing my signature. I scribble something at the bottom of some sheet he's thrust in front of me.
I just want to get out of this room.. It's closing in on me and I feel sick. I just need to leave this room, this department, this hospital!
The car journey home was a silent one. Me nor Dan spoke. He dropped us off and had to leave for work.
I cried that night more than I ever had in my life. I just couldn't understand what was happening.. I thought they said he could hear, I thought they said it was congestion, the bath water...
I called my mum. She always has the answer! Still cuddling Lucky I composed myself enough to say "hi mum.. Been told Lucky needs hearing aids..." *cue crying* from me this time!
After that call, I never cried or got upset about Luckys hearing again
That was my grieving.. Done and dusted, I needed to move on. I needed to be strong and fight for my baby.
I have a blood clotting disorder, so I went to the Consultants at 39+4wks to discuss how it would affect my labour.
Dan didn't wait with me for the appointment as the hospital are notorious for lengthy appointments and Dan isnt the most patient man I know! So he dropped me off and went back home.
The consultant discussed the blood clotting and gave me a prescription for some blood thinning injections and said that I'd need an appointment to review my disorder in a couple of months time.
And that was that! Until he glanced at my blood pressure results and notices I was showing ++ protein in my urine.
He decided to measure me and do an internal examination. I measured 34wks, which was significantly small. So I went for an immediate scan to confirm this. The scan showed there was very little fluid around the baby and there was particles in the fluid that was left..
I was immediately marched over to the labour suite and frantically texted Dan to grab my half packed bag!
I was rigged up to the monitors to check Luckys heart rate and within 30mins it had dipped significantly. Within moments my clothing was being ripped off me and I was signing for a c section!
Thankfully, whilst they were preparing me for threatre Luckys heart rate went back to normal. 5hrs later I delivered him. A few moments later he needed resuscitating - all was well in the end.
The following morning we had the midwife come round the ward and showed us how to bathe him - cue crying! Afterwards the doctor did his physical checks and all was well. Early afternoon he had his first hearing test - not responding.
- Must have had water in his ears from the bath that morning
- Fluid in his ears from the delivery
"Someone will retest him in the morning"
As promised another lady comes around to repeat the tests. Once again she can't detect any response using the headphones, do uses the arb. I can tell this testing is going on for a lot longer than expected or what's usual!! She tells me that there are a few other babies on the ward that need retesting and it's completely normal. But couldn't give two hoots about anyone else! So she continues, detecting some sounds (high frequency). I can't take much more of this, I'm tired from the breastfeeding ALL night, overwhelmed, annoyed Dan hasn't arrived, baby blues..I disappear to the toilet and just cry! I realise that I have to return to the lady, and look in the mirror to see a blood-shot-tear-stained eyes, as much as I try to clear the reddening, I can't! I return, I know she can tell I was crying, so I try to not make eye contact, busy myself with my hospital bag and clearing up. We don't talk. She just stands there with this monitor repeating these tests, over and over and over again.
I just want her to leave him ALONE!!
Just stop touching him, fiddling with the sensors..
Thankfully she finished.
Says she'll return with some information and a date for the retest.
She does.. It's next week.
Finally alone, I close the curtain, pick Lucky out of the crib and feed him..
I never for one second did I think he was deaf, just felt vulnerable and emotional that my son didn't pass this test.
Later that evening I pick up the wad of leaflets and booklets she gave me.
"four babies are born deaf every day"
No way can my son be deaf with those statistics! I shoved the papers away in my bag and forgot about them.
It took 2 months of testing. Felt like we was there every week! Keep asking whether they are picking up on any sounds, which the answer was yes! So he's not deaf, right? He can hear! Kept hearing about "glue ear" "congestion" "fluid in his ear" "mildly deaf" so there was hope??
10th January nearly 2mths old, we are at yet another test. This time we got told to wait in reception... They finally have enough information tell us about all these tests they have been doing!!
Sat down, another man whom I've never meet before enters, all very smiley and cheerful! So he explains the last 2mths and they have a conclusion!
"....feel Lucky would benefit from some amplification. So he can hear you"...
WHAT??!! My son can't hear me speak...
He waffles on, about hearing aids and how great they look, and we can have coloured moulds - football teams - ....
What's he drowning on about?? I don't care about coloured moulds, football teams..
I just cradle my baby and break down in tears. I just want him to SHUT UP! I don't want to hear him talk anymore.
I get handed some tissue, and hear him whitter on about social services, teachers, speech and language therapist, and needing my signature. I scribble something at the bottom of some sheet he's thrust in front of me.
I just want to get out of this room.. It's closing in on me and I feel sick. I just need to leave this room, this department, this hospital!
The car journey home was a silent one. Me nor Dan spoke. He dropped us off and had to leave for work.
I cried that night more than I ever had in my life. I just couldn't understand what was happening.. I thought they said he could hear, I thought they said it was congestion, the bath water...
I called my mum. She always has the answer! Still cuddling Lucky I composed myself enough to say "hi mum.. Been told Lucky needs hearing aids..." *cue crying* from me this time!
After that call, I never cried or got upset about Luckys hearing again
That was my grieving.. Done and dusted, I needed to move on. I needed to be strong and fight for my baby.
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