Tuesday, May 13, 2008

Our Journey Begins

I started creating this blog after learning so much from reading blogs from other families with a hearing impaired child. I have learned so much from people I don't even know, yet feel so close to them all! I've never done this before, but I believe it will be good in my healing, good to keep family and friends updated on our son's journey, but more than anything, I hope this helps ease another family's worries who may go through the same thing we are. Now, Aiden's journey to hearing begins.

March 17th, 2008 - Aiden's Birthday! -I was induced at 9:30 a.m. and Aiden was born before lunch! The labor and delivery went great! We couldn't believe it when they told us our baby was 8 lbs, 20 in.! He had an Apgar score of 9 out of 10! We had a perfect little baby boy and he was absolutely beautiful!!

That day in the nursery, they came in and did a hearing test - I didn't even know this was required in Texas for newborns! As they performed the test, I saw looks of concern on their faces, "It's probably just fluid, we'll come back and retest tomorrow." Which they did ... same results, same answer, "Go home and enjoy your baby, give it a couple weeks for the fluid to clear up, then come back and retest." So we did just that - we took our newest bundle home and just enjoyed him. We worried a bit, talked about it here and there, but just knew when we brought him back, everything would be okay. How could it not?! We don't have any hearing loss in our family ... Ryan & Kailyn hear just fine (when they want to anyway!) But when we brought him back for the third test, he failed again. This time I cried and worry set in. They set us up an appt. with an audiologist and said "they'll do a better test, it may be just fluid!" Of course it was just fluid! This was the only option as far as I was concerned!

April 15th - First Audiology Appt. - I was wrong ... there was another option God had for Aiden, and that was deafness. On this day, my precious little boy was diagnosed with permanent profound hearing loss in both ears (meaning, if he was next to a plane on the runway getting ready to take off, he couldn't hear it). That day in the audiologist's office is still a blur and I get tears in my eyes just thinking about it. I had a good pregancy, a good delivery, everything was so right and all I could think of was "what did I do wrong?!" All I could think was they weren't right - how could they tell he was permanently deaf in both ears with just that one little test?!? They didn't even look IN his ears! Everytime I held my baby thereafter, I felt as though my perfect world with him was shattered.

I didn't tell many people at first, saying it made it real. One of the first people I did tell though was my dear friend Jenny (who is also the speech therapist where I work) . She set me up with a world of resources. She called everyday to share something new. She let me know, EVERYDAY, that everything was going to be okay. So I took this time to research and learn as much as I could. I emailed our audiologist and asked a lot of questions (who emailed back answers I DIDN'T want to hear!) The first week was a very hard one! I cried a lot ... everytime I held Aiden I felt a loss for him. I finally reached out to a lot of friends and family for prayers, love, and support and it was the best thing I could have done! They sent encouraging words, gave huge hugs, sent names & numbers of people who have been through similar situations. It was then that I started feeling more at peace and started having more good days then bad and coming to the realization that even with Aiden's hearing loss, everything is going to be just fine. (and still 4 weeks later Jenny is still finding me great resources, even if it is the lady working behind the Target register wearing an implant! : )What an advocate she is for Aiden! She is amazing!)

May 7th - ENT Appt./May 8th - 2nd Audiology Appt. - Here is part of an email I sent to friends/family that gives a good overview of these two appts. Oh what I've learned in the last few weeks! I feel like I could teach a class!!!

We had our appointment with the ENT on Wed. and then a follow-up with the audiologist yesterday. We really like Dr. Bauer, he was compassionate, yet straight forward and great at explaining all this as well as listening/answering questions. He did tell us that the ABR tests (the one that showed Aiden's hearing loss) are very accurate, and confirmed that Aiden is deaf in both ears. He also explained that Aiden's type of hearing loss (bilateral sensorineural profound hearing loss), is the type we want to him to have, if he is to have it. They believe that Aiden's loss has to do with the cochlear hairs being deformed (which transmit sound to the auditory nerve which then transmits sound on to the brain). They can fix this with a cochlear implant which takes the place of these "hairs". We won't know 100% if he is a candidate though until his MRI, which Dr. Bauer will do at six months (because of sedation). The MRI will show how his cochlea is formed as well as show if Aiden has the auditory nerve in both ears. If the auditory nerve is missing, he will not be a candidate for implants and will not hear (they say this is rare).

We confirmed his hearing loss yesterday with another ABR test and an OAE test (which showed again, that the loss is coming from the cochlea and makes him a good candidate for implants). They also fit Aiden for hearing aids, which will help his auditory nerve get used to sound vibrations (like working a muscle) as well as get him used to wearing something on his ears. They also set up a speech therapy referral, which we will start in the next couple of weeks. So all in all, since Aiden does have permanent hearing loss, these were positive results. If he is a candidate, Dr. Bauer will implant our baby's first cochlear implant around 12 months and he will start hearing soon after!

Ultimately we wanted to hear that Aiden's loss was due to fluid and they could fix it. We didn't hear that, and somehow knew we were not going to. We have been coming to terms with it all and know we are so lucky to have this precious little guy in our life - he is an amazing child!! How lucky are we - God gave him to US!

Please continue to pray for Aiden and that he is a candidate for implants and that we find the wisdom to make the best decisions for our baby and are his best teachers! I know Aiden will ultimately teach me so much more than I will ever teach him! I have so much faith and hope and just know everything is going to work out for our newest miracle!

So here we go ... opening a new chapter in our life, not only with the arrival of Aiden, but the arrival of an unknown. I know in my heart that everything will be okay, no matter what. God has given us a beautiful little boy who will be amazing and who will not be held back - as far as we're concerned, his world is wide open and he will achieve all that he wants without limitations! I will stop at nothing to always do what is best for him, just as I do for Ryan and Kailyn! Step by step, day by day, life is a journey, and this is Aiden's.

(Here is my bundle screaming loud enough to wake the dead (he doesn't like his hat!) and peacefully sleeping, which he doesn't do much of! Isn't he so cute!?!?!)

1 comment:

Val said...

Way too cute!! Love him! and by the way, you're about to learn more in the next few years than you ever thought possible. Despite being hearing myself, my kids (both deaf/cochlear implants) taught me how to listen.