Sunday, 26 January 2014

The Day We Would Rather Forget..


On Tuesday 21st of January 2014 we heard something no parent ever wants to hear about their child, we found out that our perfect little boy is deaf.
This came as a huge shock to us both as Harry is a very alert and inquisitive baby and rather advanced for his age.
We had noticed he wasn't ever particularly bothered by loud noise around him especially when he was sleeping but we put this down to a lot of babies being quite content with noise.

Harry failed his newborn hearing screening that is given by the health visitor twice - we were told not to be concerned and that it's very common for new baby's to fail as their ears aren't always clear of mucus. We were reffered to the hospital where another screening was carried out which also came back with no clear response.. Again we were told this is quite common and we would just need to see an Audiologist to have a more intensive test.
We waited a whole month for our appointment and during this time Harry started smiling, cooing and making some lovely little noises just like any other baby! He also got into an amazing routine of managing to settle himself at bed time in his own room! We had no need for concern.

The day came for the Audiology appointment and upon stepping into the sound proof room we immediately realised that this test was very intensive and the situation may be more serious that we had previously thought. We had to make sure Harry was completely asleep so his brain activity was minimal to allow them to monitor sound waves. This in itself was a task as Harry is so used too napping in his cot in a dark room, not in a hot and stuffy hospital!
Once asleep the audiologist attached various leads to Harry's head (I HATED this) and tiny plugs into his ears. 
The test lasted around an hour and a half and we spent the entire time nervously watching a lot of numbers and squiggly lines on a screen, not having a clue what we were looking at.

The conversation that followed was a blur, I didn't take in anything at all after the word "deaf", I think I pretty much sat and nodded a thousand times.
We don't yet know Harry's full diagnosis or what his level of hearing will be because he is still so young but it is almost certain that he will need to wear hearing aids for the rest of his life.
The current tests shows that he cannot hear at all and hasn't ever been able to. I think this is the thing that upsets us both the most, the fact he has never heard his mummy and daddy's voice. He didn't hear me talking away to him in my tummy, he didn't hear me sing all my silly "go to sleep Harry" or "give us a burp Harry" songs, and he didn't hear his Ewan the Dream Sheep which we thought was soothing him to sleep.

We spent the next couple of days non stop crying everytime we looked at our smiling little dude and I found it incredibly hard to leave him by himself.  I suddenly started thinking he was lonely, scared and in pain even though he was the exact same baby that we brought home from the hospital. I have to keep reminding myself that he doesn't know any different, he's never heard before so couldn't possibly feel scared and the doctor reassured me that he isn't in any pain.

It's really important that we remain positive and try not to let little H pick up on any bad vibes from us. Babies really do feel it when something's not right so if I'm going to be sad about it I have been trying to do it in my own time. It's also so important that we continue to talk to Harry and hold him close so he can feel it heartbeats and the vibration of our voices. I have used our Baby Bjorn carrier SO much in the last few days to keep H close to my chest, which has been incredible. He absolutely loves being so snug and I can get on with things knowing he is safe and warm next to my skin.

We are so grateful for the newborn hearing screening program as everyday counts for a hearing impaired baby, the earlier it is diagnosed the better chance they have of being able to hear and develop normal language and speech. In the past parents wouldn't find out their child was deaf until 2 or 3 years old which is often too late as their speech and communication skills have already been highly affected.

In a few short weeks we hope to give Harry the gift of hearing with the help of hearing aids. We don't know yet if these will work but the audiologist seemed positive that they will be able to give him some sort of sound. I say a silent prayer every single night for my little boy and we will do whatever it takes to give him the very best chance in life.
I honestly would give that little lad my own ears if I could.

I just want to say thank you to those of you reading this who have sent us messages of support already. We were incredibly touched by the sheer amount of love there is out there for our Harry and we couldn't be more grateful to each and every one of you! We will of course keep you updated with his progress and hope to have more and more good news to post about, please keep your fingers and toes crossed for us!
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23 comments

  1. Thinking of you at this difficult time. You sound very strong and positive which I am sure will help you all though this. Wishing Harry all the best on the medical front.....he obviously has an amazing family who will be there for him even step of the way. X

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  3. Your description of this period in your lives is heart breaking yet also heart warming, you come across as the loving, doting parent your son needs to begin his journey through life. A loss of a sense gives height to other senses so whilst he may not hear your love, he will see, touch and sense your live and devotion and this is what matters xx

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  4. Oh this brought a tear to my eye. I cant imagine how much of a toller coaster this has been for you but remember that despite him having hearing problems he will still grow up to be happy healthy and sucessful. My boyfriends cousin is fully deaf and she is wonderful, got a first class degree in astrology, went on and did her pgce and now teaches kids and nothing holds her back! She even taught hearing kids and although it was alot tougher she loved how well they responded to her despite this. She can lip read wonderfully and the whole family can sign now. She has been a blessing to their family just like harry will be to yours. You have a tough road ahead but it will be wonderful in the end! X

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  5. Oh Hun I can't imagine what this would be like! Fingers crossed for you, but like you said he doesn't know any different so he wot be upset or any different! Xx

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  6. I can only imagine what you and your family are going through right now. I'm so sorry!! Sending you positive thoughts and hugs!!

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  7. I am a new mum and must say your blog has brought tears to my eyes. Everything you are doing for your Son is wonderful and I wish u every success in the journey you will take with Harry now xx

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  8. I am a new mum and must say your blog has brought tears to my eyes. Everything you are doing for your Son is wonderful and I wish u every success in the journey you will take with Harry now xx

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  9. I am a new mum and must say your blog has brought tears to my eyes. Everything you are doing for your Son is wonderful and I wish u every success in the journey you will take with Harry now xx

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  10. I am a new mum and must say your blog has brought tears to my eyes. Everything you are doing for your Son is wonderful and I wish u every success in the journey you will take with Harry now xx

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  11. Sending all of you lots of love and prayers especially gorgeous baby Harry whose pics I drool over on Instagram!! He is absolutely adorable and is lucky to have such amazing parents! Staying strong and positive is definitely the best way through this! Plus he is SO aware!! It definitely does make up for his lack of hearing as you said in your video :) xxx

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  12. Hi hope you guys got my messgae via Sarah. I didn't want to text you as I knew that you'd be going through it. Sorry to hear the news but I as I said to Sarah, with implants and hearing aids, there's a strong possibility that Harry can get to hear in the near future.
    Love Simon x

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  13. Dearest Lucy, Scott and lovely little Harry,
    I was so surprised to hear this news about your darling boy. Thank goodness there are so many more things that can be done for little ones with limited hearing these days and I'm sure the future will be positive, especially with such wonderful parents and family support around. He is a beautiful boy - no doubt because of his gorgeous parents and you can be so proud of yourselves for being such doting parents. Good luck to you all with the tasks ahead, but be assured that I'm sure that Harry will have a bright and wonderful future no matter what lies ahead xxx

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  14. My heart really goes out to you, Harry and your family. It must be so hard for you right now. It's not the same, but my brother has severe special needs and I know how hard it was for my parents to deal with when they thought they had a perfect little boy then realised things were going to be a lot more difficult. It's my due date tomorrow and after everything I have gone through with my brother I am so terrified about finding something like this out. I am so pleased they have discovered it so early and that there is a lot they can do. I really hope you get all the support you need for yourselves and your beautiful baby boy and I wish you all the good luck in the world. xx

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  15. This post was very moving for me (I am just over 6 months preg) and you got me thinking about all the times I talk to my daughter in my tummy and wonder if she can hear me. Just being aware of this is making me so thankful that I can feel her kicking inside of me and that she can feel my hand when I rest it on my tummy.

    I am glad that Harry is happy and healthy and that you are such a lovely mum for worrying about him the way that you do. I know this is an unexpected twist for you, but that's what parenting is all about, right? Parenting a deaf child will undoubtedly be a struggle at times, but you will all come out stronger from this experience. You will do the best you can for Harry and he will do the best he can for you. You will both be teaching each other a whole lot and will get to have a special experience and bond that other parents and children will never have. You will find different ways of communicating and connecting and I'm sure your little family will thrive from the experience. Best of luck, and warm wishes sent your way.
    -Danielle

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  16. Bless you and your gorgeous boy - this is a bump in the road, but you know what? It's a part of him, and he's even more precious for it. He's still perfect, and nothing will hold him back now you are empowered with this information. Deafness is no barrier to a fantastic life - my husband's cousin plays in the deaf rugby England team! Many amazing things lie ahead for you all, I'm sure. You seem like a wonderful Mummy - keep smiling :) x

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  17. Dear Lucy,
    Praying for you and little Harry. May you be blessed with strength during this time and Harry with lots of blessings. Love, mm

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  18. Oh Lucie, I am so sorry to hear this news. This post made me cry but in an uplifting way because even you are going through what no parent wants to hear, you sound very determined and hopefully for your gorgeous boy. You seem like an incredible Mummy. Good luck over the next few months. x x

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  19. Oh Lucie, this must have really hit you hard. Its something you don't ever really think about, amid all the things you worry about when you're having a baby - I have to admit, hearing never even entered my mind!!

    But the things they can do these days are pretty incredible, its not like it used to be when being deaf meant you would stand out and not be able to live life to the fullest. The technology now is astounding.

    And even though he may not have heard you in the womb in the traditional sense or heard you singing, he'd have picked up on the vibrations and enjoyed that just as much.

    *hugs*

    He is so beautiful!!

    Hayley
    Sparkles & Stretchmarks
    xxx

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  20. Aww, this post is so heartbreaking <3 Much respect for you both xx He will be a mini master of lip reading. He will be able to still enjoy most things we do, as he'll pick up the vibrations etc. My brothers deaf in one ear, it slowed him down a little but he's managed to get through life. Don't think he's not perfect because he IS! His other senses will be heightened but maybe as he grows things MAY change especially with technology becoming even better as each day goes by! My 2 year olds been quite slow and lazy with his speech but I'm still proud of him as you will be with Harry x A lot of us parents take so much for granted with our children & it's only when you read something like this that it hits you. You've got a beautiful little boy who will make you even more proud than anyone else.

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  21. hello, i found you by google for pregnancy bloggers. love your blog and i'm profoundly deaf, from birth. i am 25 years old. your son is so gorgeous and he will be fine when he growing up.

    I used totally hate to wearing hearing aids when i was little, but give it time until i was a teenager and start to wear it everyday and i couldn't live without it. i finally know who's the voices if i was in my room, i could hear my mum's voice, of course i couldn't understand what she said. i has to have lipreading to understanding people. i have lots of deaf friends, we all use British Sign Language to communicate each other. I also have a job with hearing people, we communicate just fine.

    You can look up the internet for baby sign language to communicate Harry, for sample: drink, eat, mummy, daddy etc.

    i'm expecting a baby in July 2014 with my deaf boyfriend aswell. our baby might be deaf or hearing, as long its healthy and we will love our baby so much.

    Hearing aids does work. I could hear the noises but i couldn't guess it where its come from. as child, they didnt ask whats the noise coming from. But when i was a teenage, i asked my mum, family, hearing friends whats that sound or where is coming from.. then next time, i just knew the sounds and know what is it.

    You two will be amazing parent to Harry.

    Good luck, and don't worry too much.. let harry to enjoying his childhood until when he's getting older enough to able to know the sounds and communicate. i have some deaf friends who doesn't signed, only talking.. most of my friends feeling comfortable to signing and communicate with deaf people who can understanding their comforts about deaf.

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  22. I was going through some pregnancy blogs & came across yours.
    Praying for Baby H & his loving+caring parents.
    <3

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  23. Teary as I read this. Be strong and I know deep down inside that you know he will be fine. You're already in great hands, have the news early and being his Mum who is going to make sure he gets the best care, love and attention throughout his life.

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