Preemies
knottieca2041addcbdc538
member
Options
hearing test failed - update
knottieca2041addcbdc538
member
in Preemies
Hey! so when ,y newborn failed his newborn screening and then later failed his recheck at 2 weeks, I must have read every message board on the internet. I was so scared and nervous and planning our life with a deaf child. Of course having a hearing impaired child is not the worst thing, and having a healthy baby is all that matters, but I was really afraid. I didn't really find a lot of updates, and I swore once I knew more I would post something. And before I get yelled at for not posting on one of those strings, I tried and it wouldn't let me reply 9the Bump has so many rules lol). So some advice- don't' be like me and google everything...it will drive you crazy and it's something that I am really working on since this has happened.
Just like everyone we were told it was likely fluid so to retest in two weeks. During those two weeks I was like a hawk- looking for any sign he could hear. A freight train could have crashed through my living room and this kid would not flinch. After he failed the 2 week retest, we were referred to audiology. Luckily, we were able to get a quick appointment at Boston Children's Hospital. The appointment was a month away. So again I was watching and hoping for any sign of hearing. One time my husband smashed an entire bottle of wine, and I thought I saw him jump, but I wasn't sure if I saw it or was just so hopeful I imagined it. I had a few instances like this- at a wedding when everyone cheered and he woke up, but husband would accidently slam the bedroom door etc. FINALLY the test came---- talk about stress. So it's called the ABR test and they told me it takes at least 2 hours. The baby has to sleep for the entire time. They tell you not to feed the baby or let him sleep for "several" hours before. What??? all I do is try to get this kid to sleep and now I have to keep him awake. Needless to say, it was the worst morning every- and he was on FIRE. Once we got there they bring you into a little dark room with a Glider and I was able to feed him then, and he fell right asleep. Before that though, they did this little test on his ears. It blows a puff of air into them to see if the ear drum is reacting. If the ear drum is reacting then it will show on the computer and jump all over the place. Our lines were just flat, showing the ear drum was not reacting. Again, I thought this surely meant he was deaf.
Once my son was asleep, they put little sensors on his head and little tubes in his ears. The test itself is pretty uneventful....literally. You just sit there and hold your baby and they are in another room running the tests. Thankfully he slept the entire time. I could sometimes here faint little beeping, and it seemed like sometimes the sounds seemed to bother him. The test took about an hour and 45 minutes. We learned that he was showing minor hearing deficiencies in one ear and normal to minor in the other. He could hear us when we speak - which was such an amazing thing to learn, because even though I'd convinced myself he was deaf, I still talked to him all day long. And most importantly it was Conductive hearing loss vs. sensory hearing lost- which means that something is blocking sounds- and very likely treatable. WOOO HOO! The thing is, the audiologist can tell you what he hears and what type of hearing loss it is- but they can't tell you what is causing the problem. That is ENT's job.
Also, they tested him for CMV - which is a really scary virus that I had never heard of. Thankfully he tested negative. I'm still not sure why they tested him because that would usually be sensory hearing - but I am glad they were overly cautious. It was very scary waiting for the results. Googling this and seeing the devastating affects this has on families really put things into perspective for me and seeing those hero parents coping with the daily struggles, I decided I was going to shut up and be thankful for what I have been given.
From here we went to ENT and learned that it is in fact fluid in his ears. It looks like one has cleared up and the other still has some. If it doesn't clear by November he will probably have to get tubes. But it seemed that literally the day after the audiologist appointment he could hear a feather hit the ground. I swear he was messing with him. We still aren't out of the woods, and want to make sure everything is cleared up by 6 months so it doesn't affect his language development.
I just wanted to write this because I saw so many posts from worried moms and never really saw any updates. If anyone is up at 2 am and comes across this - I hope it helps. It's so stressful and I just wanted to find a good update or something reassuring.
Just like everyone we were told it was likely fluid so to retest in two weeks. During those two weeks I was like a hawk- looking for any sign he could hear. A freight train could have crashed through my living room and this kid would not flinch. After he failed the 2 week retest, we were referred to audiology. Luckily, we were able to get a quick appointment at Boston Children's Hospital. The appointment was a month away. So again I was watching and hoping for any sign of hearing. One time my husband smashed an entire bottle of wine, and I thought I saw him jump, but I wasn't sure if I saw it or was just so hopeful I imagined it. I had a few instances like this- at a wedding when everyone cheered and he woke up, but husband would accidently slam the bedroom door etc. FINALLY the test came---- talk about stress. So it's called the ABR test and they told me it takes at least 2 hours. The baby has to sleep for the entire time. They tell you not to feed the baby or let him sleep for "several" hours before. What??? all I do is try to get this kid to sleep and now I have to keep him awake. Needless to say, it was the worst morning every- and he was on FIRE. Once we got there they bring you into a little dark room with a Glider and I was able to feed him then, and he fell right asleep. Before that though, they did this little test on his ears. It blows a puff of air into them to see if the ear drum is reacting. If the ear drum is reacting then it will show on the computer and jump all over the place. Our lines were just flat, showing the ear drum was not reacting. Again, I thought this surely meant he was deaf.
Once my son was asleep, they put little sensors on his head and little tubes in his ears. The test itself is pretty uneventful....literally. You just sit there and hold your baby and they are in another room running the tests. Thankfully he slept the entire time. I could sometimes here faint little beeping, and it seemed like sometimes the sounds seemed to bother him. The test took about an hour and 45 minutes. We learned that he was showing minor hearing deficiencies in one ear and normal to minor in the other. He could hear us when we speak - which was such an amazing thing to learn, because even though I'd convinced myself he was deaf, I still talked to him all day long. And most importantly it was Conductive hearing loss vs. sensory hearing lost- which means that something is blocking sounds- and very likely treatable. WOOO HOO! The thing is, the audiologist can tell you what he hears and what type of hearing loss it is- but they can't tell you what is causing the problem. That is ENT's job.
Also, they tested him for CMV - which is a really scary virus that I had never heard of. Thankfully he tested negative. I'm still not sure why they tested him because that would usually be sensory hearing - but I am glad they were overly cautious. It was very scary waiting for the results. Googling this and seeing the devastating affects this has on families really put things into perspective for me and seeing those hero parents coping with the daily struggles, I decided I was going to shut up and be thankful for what I have been given.
From here we went to ENT and learned that it is in fact fluid in his ears. It looks like one has cleared up and the other still has some. If it doesn't clear by November he will probably have to get tubes. But it seemed that literally the day after the audiologist appointment he could hear a feather hit the ground. I swear he was messing with him. We still aren't out of the woods, and want to make sure everything is cleared up by 6 months so it doesn't affect his language development.
I just wanted to write this because I saw so many posts from worried moms and never really saw any updates. If anyone is up at 2 am and comes across this - I hope it helps. It's so stressful and I just wanted to find a good update or something reassuring.