Sunday, September 28, 2014

Background on Beckett's Hearing and 2 months update :)

Some things in life are just out of your control, and frankly it sucks. Beckett failed the newborn screening time twice at the hospital in his left ear. We then waited two weeks in hopes that it was just fluid and would drain out. But at the hospital he failed again. So they referred us to an audiologist to get deeper testing. The first time we went was just a disaster. We waited for 45 minutes (I guess all of their appointments ran long that day) so by the time we were seen Beckett was awake and in order to get the most accurate testing they should be asleep. So we tried to do the 3 different tests before I finally said I need to feed him this isn't working and I want to give him the best chance of passing. So after I fed him the audiologist came back in and tried to do another test but by then he was pretty frank and said that the receptionists screwed up scheduling appointments for pretty much the entire day and didn't schedule extra time for any newborn screenings. So we went back the next week and they did the testing again.

We were really hoping it was just fluid but something in my gut was telling me it wasn't. Maybe it was the Spirit prepping me for bad news so I was more prepared.  During the testing they determined that Beckett has moderate-severe sensorineural hearing loss in his left ear and it is permanent. The root of the problem stems from the inner ear in which there is a problem with the cochlea.  Beckett has issues with high pitches, so sounds like voices are very hard for him to hear out of his left ear. The first thing I thought was 'but his right ear works greats great so isn't that enough'. But that's not how your ears and brain work independently and together. If there is an issue in one it effects how you learn to transmit sounds into words- so speech is impaired, learning development is effected, and there are other issues as well. So it's not something that you should ever leave untreated, especially in infants. The earlier you address the issue the better. So we are at a good advantage since we are addressing it so early that hopefully there won't be any delays.

So since this hearing loss is permanent really the only treatment right now is a hearing aid for his left ear. The hraring aid needs to be worn 24/7 for the rest of his life except for when he is swimming or sleeping.He may be a candidate for a cochlear implant in the future but that will have to wait until he is older and we're not ever sure if we would want it. When people hear the word implant they immediately thing of something unseen. Cochlear implants are anything but. It's virtually a hearing aid with a wire that contacts to the outside of your skull (so on top of your head.where it's very noticeable). It's actually much larger than a hearing aid. We would definitely get it if he was deaf but his hearing in his right ear is good and the left one can use a hearing aid. We went to the ENT (ear nose throat doc.) And he agreed with the audiologist. He does want to do a cat scan or an MRI in December when Beckett is a little older to see the extent of what is wrong in his inner ear.

When they told me I was kind of numb at first and then just sad. You never want to hear that there is something wrong with your kid or something that could possible be a challenge in his life.  I fear the day that some kid makes fun of him for having it or when he feels embarrassed by it. He may have our permission to punch that kid in the stomach, or hopefully he'll do the opposite and befriend that kid and embrace the fact that he had an aid and use it to his advantage. It's up to him though. I don't want him to think that's it's something to be ashamed of because he may look a little different than other kids. I want him to feel like 'sure my left ear is a little off so I wear this to help me hear and I can do anything that anyone else can-heck there are things that I can do better!'

I also want him to know that he is blessed, very blessed to be able to use a hearing aid. If it was any worse he would be deaf in his left ear and there would be no point in one. And frankly if the worst thing in your life is a hearing aid you are truly blessed and have a wonderful life.  Beckett is going to have to go about some things a little different than other kids but I want him to know that it doesn't make him worth any less than them. God doesn't give you anything you can't handle.  He will have to wear a hearing aid the rest of his life. We won't know if it's progressive (meaning his hearing will get worse) or if he will start to loose hearing in his right ear until he is older.

I was kind of in denial about him having to wear a hearing aid for the rest of his life and if this would effect his development and self esteem. It didn't really hit me until the ENT confirmed that it was sensorineural and permanent and for some reason I just burst into tears in his office. He was my last hope that this was something that could be fixed.

I feel a bunch of weird emotions. Like I'm sad for Beckett that he'll have this struggle but at the same time I feel bad for feeling sad because there are people with children who have life these life threatening diseases. Like I said if his biggest struggle is hearing aids and everything that comes along with them then he is living a great life. That being said I've come to realize that it's okay to feel upset about this it doesn't make me a bad or ungrateful person. When we first found out everyone we told would immediately say it could be a lot worse at least he's not deaf. I know that it's coming from a good place, but honestly when you get bad news and need to talk to someone that isn't the right choice of words- we know it could be a lot worse, we just want someone to validate the emotion that we are feeling and tell us that it's okay to feel that and it will get better.

We are constantly getting asked on a daily basis what he is wearing in his ear haha.  At first it annoyed me, but now I am used to it.  When little kids ask what it is I always start of with something like you know how Batman has all these cool gadgets to help him fight bad guys, well Beckett has this really cool one that helps him hear so well it's like a superpower.  They think it's pretty darn cool! I even had one little boy ask to borrow it haha.  It's also funny when elderly people ask about it because they are just blown away to see a hearing aid on an infant (especially when they wear one themselves).  Just today the elderly women I was sitting next to in relief society asked what it was and I told her a hearing aid.  She just smiled really big and said something along the lines of I thought it was! And then showed me hers haha. Developmentally so far Beckett is doing awesome and seriously he is as sweet as pie. This kid is like my little miracle because he is just what we needed in our family. He brings so much peace and happiness.

He loves being in the baby carrier and I love wearing it. We can see a bond developing between him and Brynlee which is really cute. Sometimes when he's fussy and I can't pick him up right away Brynlee will run to him and tell him it's okay, kiss and hug him and he'll actually calm down. These two love each other already. She'll even tuck him in with her blanket "reesi" sometimes. Which anyone who has ever met her blanket knows that's a big deal and true love.

At two months old is he 14 1/2 lbs and 23 1/2 inches.  He is a big and healthy boy! He nursers about every 2-4 hours during the day so it's pretty easy to go out and do stuff with him and Brynlee.  He is an awesome sleeper at night.  Most nights he'll sleep through completely and wake up at 7am to eat, but sometimes he does add a little midnight feeding in there.

I absolutely LOVE breastfeeding.  Not just because of the financial benefits (which are awesome) and the nutritional, but because I just feel this beautiful closeness with him (I felt the same closeness when I fed Brynlee a bottle too, it might just be the act of feeding haha).  He'll randomly stop eating, and give me the biggest smile and little grunt/giggle and then keep on eating.  I just love him soooooo much!

Brynlee is such a amazing big sister! She is so sweet with him and always comes up to him and says "pretty baby" and loves kissing him.  She also loves holding him now!  He is pretty much half her size so it's a little funny looking.  B's speech has just be flourishing and improving so much.  She carries on these funny little conversations with me and she actually tries to negotiate with me about watching movies or taking a nap.  She is still her same old social butterfly who just loves everyone.