Telling people our son was deaf

Evening All,

This along with a lot of the others has been a hard one. I have written and rewritten it so many times in my head. Not wanting any one to be offended by what I might say. Something like this is a personal journey and everyone feels differently about comments and situations. 

We decided only to tell immediate family that Eli was having hearing tests in the beginning because we didn't have any answers and knew people would have questions. We had loads and it took a while to understand the answers to a lot of these questions for us. 

So when you tell people your son is deaf you don't really know what you want them to say. If someone was telling me that, I don't know what would be the right thing to say to them. But saying something can make a difference. Letting that person know you're there for a chat if they need it and really meaning it is the best comment I think. For us there's no other deafness in the family so it was a shock to us and everyone else. We have had to help educate people along the way as well as educate ourselves. Luckily I love a good Google.

Most people tried to be supportive but I have lost some friends since because I needed a support network and they weren't there. Be it because they didn't know what to say to me, wasn't fussed or had other things going on I don't know. At the time I'm not going to lie it hurt and I felt really alone at times. I will do a post on my anxiety since Eli. Now I don't have resentment and sometimes friendships end. Thats part of life even if it does hurt. 

I think the comment that always frustrated me the most then and still now is "it could be worse". Now I understand that it comes from a good place in there mind but honestly that's not helpful at all. Deafness isn't the end of Eli's life but for new parents navigating this new world it is scary because it is so unknown. I guess it could be worse in lots of ways but honestly not having hearing in a hearing world is still a struggle in this day and age. There is still so much unknown and the fact is Eli's life will always be a little harder then Mason's. Right now we don't know how much harder but as a mum with anxiety you don't and can't just think about the right now. This comment doesn't seem to bother Luke like it does me. In the beginning I actually felt really angry if someone said that to me. It's not a competition and shouldn't matter how big or small a disability or difference is.  

Like I say though most people were polite and sent there well wishes. We had some lovely stories of people that knew someone else who had hearing aids. We had a few people who questioned if Eli would grow out of it. A question we had asked ourselves in the beginning. This is why we needed to know the information ourselves beforehand. 

We announced on social media because it is the easiest way to get to everyone. It's how we have announced anything major since social media became so big. We had a build a bear with hearing aids on to match Eli. I love a good photo session with the boys so any excuse and I will take it. They will have a lot of embarrassing pictures for there 18th birthday. Looking at the picture now makes me smile because the hearing aids are upside down on the bear. This was how little we knew. But it was a big milestone for Eli and I love to celebrate and share the boys milestones. 

How did people react when you told them? What did you want people to say? 

As always thank you for reading 

Jane 

XxX

First Hearing Aids

Let's jump into this.

I remember that day and we were excited but nervous to go to the audiology centre. My sister in law took the three of us there.

From my understanding, (I am rubbish at the correct terminology) there are 3 hearing aids available on the NHS. Eli was supposed to have the first level on his first pair but they decided that they wouldn't be strong enough so went for the middle level. In reality no hearing aid was really going to be enough for Eli's hearing levels but it's a process and you have to go through it. We picked out metallic blue as Eli's colour of choice. They honestly were adorable.

We had been told not to expect any reactions but you see so many beautiful videos online of children having amazing reactions that you can't not have this at the back of your mind.

When we got there Eli was asleep. He was a small 7 week old baby. They hooked his hearing aids up to the computer and set his levels. Because Eli has different levels on each side each hearing aid is set accordingly.

They then showed us how to put them in and take them out. I remember how gentle I was in the beginning I was so scared to break them. They showed us how to clean them, how to remove the batteries and test the batteries. Explained that we had to test them every day to make sure they were working and to listen for a whistle sound because that would mean Eli's moulds were to small. They gave us a little bag to fit everything in. I used to carry this bag around with us in the early days as well and lots of leaflets. This was a lot of information before anything had happened.

Then came the switch on. Eli was still Asleep in my arms.  They put the hearing aids in Eli's ears and closed the battery compartment. We heard them come on and Eli stayed asleep. They made some noise to make sure nothing was uncomfortable and Eli stayed asleep.

This felt really strange. We knew he wouldn't react. We were told he wouldn't react. We had prepared ourselves for no reaction. But still when your actually in the moment and there's no reactions. It opens a lot of questions for us and with every stage so far no actual answers. I struggle with uncertainty like this. This in itself did create a lot of anxiety for me.

Eli was booked in for another hearing test about 4 weeks later. The centre was moving to a new facility and they needed to settle in there. To be honest it was nice to enjoy our baby without tests and to get used to handling the hearing aids.

As always thank you for reading.

Jane
XxX

The second hearing test

Hi There,

So this is the next set of tests for Eli's hearing journey. We went to our local health centre and the same nice lady was there. She redone the same New born hearing test and again these didn't show any results. This was now our fourth failed New born hearing test.

The next test was an AABR test. Eli had 3 small sensors placed on his head and they play small clicking noises. We took Mason with us and I remember Luke holding Eli and I was holding Mase and bribing him to be quiet with a treat afterwards. The tests showed the same that there was no response. It was explained that we will be sent to our local hospital to have further testing with the audiologist department. We could still go and have these more detailed tests and they could show that Eli's hearing is perfectly fine. However, at this point I was adamant that Eli was deaf. Luke was still being optimistic.

The next appointment came through really quickly. We we're seen the following week. Our in laws watched Mase for us and we went to hospital. One thing Luke always has done and continues to do is cause an argument on the way to any appointment. He is always an arse and it's his way of dealing with the stress he is feeling.

This appointment took 2 hours. It was in a soundproof room in the peak of summer. We were all sweating it was so hot. We had to get Eli to sleep so he could stay as still as possible and we had to stay as quiet as possible as to not interfere with the results. I swear we were actually scared to breathe to loudly. There was nothing to look at apart from one small poster with the alphabet on that I think I had read it at least a hundred times.

We came away again from this appointment with no answers but an appointment the following week. We had three in total each being 2 hours. They tested all levels of his hearing. If I am honest even now 18 months in there is so much that I'm unsure of with the terminology.

The results showed that Eli has severe/profound hearing loss in his right ear and moderate/severe in his left ear and would need hearing aids fitted. That was all the hospital could tell us at the time and we had to meet a consultant to tell us more and talk hearing aids.

We went to pick Eli's hearing aids the following week and he had his first moulds taken. We picked these beautiful metallic blue hearing aids and he looked adorable in them.

Then we were told about the tests that Eli would need to have to find the reason he was deaf in case it comes with any other Medical conditions. We have always said we don't care about the reasons but did want to know if there was a chance that Eli would have any other Medical conditions from the beginning. He had to have a ECG test, MRI test, eye test. There was speak of blood tests to check for connexin 26 and other genetic conditions. I didn't want Eli to have any unnecessary invasive tests at this stage.

I remember I hadn't cried at this point. I was shocked and spent a lot of my time on Google searching for other stories and other parents that I could speak to who have been and are going through the same as us. There's a Facebook page called unofficial NDCS that's really helpful and the NDCS website is brilliant. I have met some fantastic mums and dads on Instagram as well.

The first time I remember crying Mason was having a nap and Eli was sitting on my knees. I was singing to him badly like I had done from the beginning and still continue to do. Then all of a sudden like a massive wave it hit me that Eli has never heard me tell him I love him. He had never heard me talking to him and reassuring him that everything was going to be ok. I sat looking at my beautiful baby boy and just cried. I felt so out of my depth. There was so much I didn't and still don't know.

As always I have rambled on. I have tried to be as detailed as possible because when Eli had all of this I would of loved more blog posts to read and reassure me.

I will talk about his first pair of hearing aids next time.

As always thank you for reading.

Jane
Xx

First failed hearing test

Good Afternoon,

I thought I would share the start of Eli's hearing journey. Everyone's journey and feelings are different and there's no right way to feel.

Eli had his new born hearing test in the hospital. He was about 18 hours old. I was alone in the hospital and a lady with a trolley and smiley face approached us asking to do Eli's new born hearing test. I smiled and got Eli comfortable.

She inserted what looked like a small headphone into his right ear and pressed a button on her machine. We both sat in silence waiting for the machine to do it's thing. She pulled it out and tried the left side. Again we sat in silence. At this point I thought it was all fine. She took the earbud out and said maybe they needed the size down because it wasn't showing anything on the machine. The lovely lady tried that and the same thing didn't at any responses. She then changed the batteries on her machine but the same thing. She explained that Eli was a little early (born at 37+2) that it could be that. She would come back later on in the day to try again. She then went to the other new born on our wing. I listened on to see if it was a faulty machine. This little baby passed the test first time in each ear.

I remember texting my husband to explain what had happened and him asking what it means. I didn't know what it meant at that time. It worried me a little but I was still in a newborn bubble and didn't want to think to much into it. No one in our family was deaf. So we thought it must just be a small glitch and all will be fine.

When my husband arrived he had a lot of questions but I didn't know the answers. I remember Luke being adamant that Eli had jumped to a noise but actually his crib had been knocked at the same time.

The lady came round later on and tried one last time at the hospital. Again Eli failed this hearing test. We were told to wait until he was 40 weeks gestation and they would test again, just in case he had fluid in his ears from birth.

Those 3 weeks felt like forever and I spent a lot of time on Google. There wasn't any answers at this point. Howeved, from my Google results most of the stories were of people failing the new born hearing test but passing at the next round. For me I knew in my heart that Eli was deaf. I don't actually know what that meant and how many tests and appointments were to follow. Luke was being more optimistic (or in denial) and thought everything would be ok.

This has been a long post and I only have more to write for the next stage. I think I'll break them down in to sections. The next post will be on our next step.

As always thank you for reading.

Jane