He's not "Deaf"....He wears a BAHA...or two

To clear up my post "Davin is born......", I stated in that post that the doctors said he was "deaf, and would never hear", well that was NOT true!!!  In the first few weeks of his life and after much research, hearing tests and "home testing" I found out that he can hear!!! 

We took him to Children's Hospital to have an ABR (hearing test) done when he a few weeks old and found that he was responsive, which meant most likely he had inner ears (which we were originally told in the NICU that he didn't, from looking at his CT scan).  He was then fitted for a BAHA Soft band, bone conduction hearing aid.  This hearing aid would allow sound to get from his environment to the inner ear through bone conduction, totally bypassing the outer and middle ear!!! YAY!!! 

He got his first BAHA when he was about 7 weeks old, my baby was hearing me clearly for the first time, it was awesome!!  I was very depressed before this, thinking that my baby wasn't hearing his mommy sing and talk to him.  I would hold him on my chest, and press my lips to his head and hum, hoping that he could somehow hear my humming, or at least feel it. 

~First time wearing his hearing aid~
I love the look on his face, like "what it all this noise" haha 

We later found out, when he got older, that he COULD hear without his hearing aid on, he doesn't hear great, but still good news!!  So he WAS hearing me when I would sing to him, and definitely hearing my humming, through bone conduction. 

I swear, sometimes it seems as if he can hear us clear as day without his "He's" (that's what he calls his hearing aids) on.  I know that's not the case, he basically hears as if you were to go under water and listen, or plug your ears, that's sort of how he can hear with out them on.  A little different though because we have ear canals he has bone and cartilage.  Anyway, that's just an "example".  Normal hearing range is 10-20 decibels, Davin's hearing is at 60-65 decibels.  With his hearing aids on he is close to the normal hearing range :-)  It doesn't sound like you and I hear, but at least he can hear, right?!?!

He wears a headband on his head with, now, two hearing aids attached to it.  We have a lot of people stare, ask what is on his head, make guesses at what it is.  I don't mind when people ask us about him, but to the people that make their assumptions, NO its not a "thermometer", or a "gps tracking system", or "part of a costume", he doesn't "Look silly", he doesn't "Look like Shrek".   He is an amazing little boy, who happens to wear a headband, with two bone conductive hearing aids attached to it, on his head.

DAVIN....Apple

FYI, Davin is pronounced with the short "A" sound, as in "Apple".....it's not "DAVE-IN"....just sayin' ;-)

If I would've known that we would be having so many doctors appointments I may have rethought his name...."DAVE-IN, the doctor is ready to see you"..........Me: "You mean DAVIN?"

Nah, I like his name...  :-)

Microtia and Aural Atresia....What is that??

That's what we wanted to know, but nobody really had any answers for us!!!  We took Davin to a highly recommended ENT when he was about 2 weeks old, he confirmed that Davin's condition was what we had thought, and had already started to research....Microtia and Aural Atresia.   I appreciate what he told us next, "There's really nothing I can do for Davin other than refer you to the specialists when the time comes, if you need me to". 

Sooooo what did I do??  I continued to research, research, research, here is an overview of what Microtia/Atresia is.....thank you internet, If it weren't for the internet I would not have the knowledge that I do to be an advocate for Davin.  Not only did I learn all about what Davin had but I also found out where the best of the best doctors are to do his surgeries.  (There will be more about this in future blog posts)  (information below sited from Wikipedia.org) 

Microtia~ Means "little ear"

Microtia is a congenital deformity where the outer ear is very small and underdeveloped or absent. It can be unilateral (one side only) or bilateral (affecting both sides). It occurs in 1 out of about 8,000-10,000 births. In unilateral microtia, the right ear is most typically affected.  About 10% of children affected by microtia have it affecting both ears.  Davin is affected in both ears, so he has bilateral microtia, therefore, he is in that 10%.

There are 4 Grades of Mictotia~

Grade I: A slightly small ear with identifiable structures and a small but present external ear canal

Grade II: A partial ear with a closed off or stenotic (narrowing) external ear canal producing a conductive hearing loss

Grade III: Absence of the external ear with a small peanut vestige structure and an absence of the external ear canal and ear drum

Grade IV: Absence of the total ear or anotia

Both Davin's ears are Grade III

Grade III microtia is most common, and can be corrected by surgery. Typically, testing is first done to determine if the inner ear is intact and hearing is normal. If hearing is normal, the next step (if a canal is not visible externally) will be to determine if a canal exists, by CT scan.  The age when outer ear surgery can be attempted depends upon the technique chosen. The earliest is age 3 for Medpor and 6 for Rib Cartilage Grafts. However, many surgeons recommend waiting until a later age, such as 8-10 when the ear is closer to adult size.

Davin will be getting Medpor

Medpor is the reconstruction of the ear using a polyethylene plastic implant.  This is a 1-2 stage surgery that can start at age 3 and can be done as an outpatient without hospitalization. Using the porous framework which allows the patient's tissue to grow into the material and the patient's own tissue flap, a new ear is constructed in a single surgery. A small second surgery is performed in 3-6 months if needed for minor adjustments. This surgery should only be performed by experts in the techniques involved.

************
Aural Atresia~ The absence of the ear canal and ear drum

With aural atresia, there is a high incidence of malformation of the external ear and middle ear also, but the inner ear and auditory nerve are frequently normal.  Aural atresia most commonly effects just one ear (unilateral), but can occur both ears (bilateral).  Davin is affected in both ears so he has bilateral aural atresia.  He will be having surgeries, called Atresia Repair (also referred to as canalplasty), to create ear canals.

 ~Davin and his right "little ear"...don't mess with him, he's one tuff cookie~

Picture courtesy of Keepsake Portrait Studios www.keepsakeportraitstudio.net

References:

Wikipedia

Davin is born....unconscious.....without ears??

March 1, 2008~ 2:05 a.m. (WARNING LONG and a somewhat graphic pic)

After pushing for about 4 hours and a VERY traumatic delivery my bundle of joy, Davin Thomas, was born into this world......only he was unconscious, "loose and limp".  Davin was placed on the left side of my chest for about 5 seconds then swiftly taken away from me.  In that 5 seconds I noticed his left ear, it looked like it had been smooshed from being in the womb. 

They put him in the crib across the room and about 6-8 people were around the crib working on him, while I was being worked on myself.  After what seemed like forever we finally heard him cry, someone (a nurse I think) said, "listen he's crying".   We were so happy!! 

Soon our happiness turned to devastation, sadness, anger, pity, confusion, hatred, blamefulness....more emotions than I can even explain.  One of the pediatric nurses brought him over and told us that he didn't have ears, he was deaf and would never hear, and that he had a cleft palate (which we later found out that he didn't), then she proceeded to show us his little ears. 

They swiftly took him away from us again and took him to the NICU because of his breathing, and other problems.  At that moment our life felt empty, all Chris and I could do was hold each other and cry as hard as we ever had.  My mom was also in the room with us and I am so thankful that she was because I really needed my mommy then!!!  We all just cried......

Chris and my mom were able to go to the NICU to see Davin, my dad was on his way to the hospital too.  They would come back and tell me how cute and precious he was.  I had some issues myself from the delivery so I couldn't go to see him for a few hours.  The nurses wouldn't let me leave the room but I was determined to go and see him, I stood up (have no idea how) and fell right back down into the wheelchair, the nurse gave in and let Chris take me to see our son.  I finally got to really hold him, it was amazing!!! 

Looking at his little ears, running through my head was, what did I do wrong, what did I not do, what did I do......to make this happen to him, why, why, why?!?!?!  I blamed myself, and actually that feeling lasted for a long time.  Even to this day I still have my moments, but deep down I know that it was nothing I did, or didn't do. 

After a few hours of sleep, we went back to the NICU to see Davin.  We were there when the doctors were making their rounds and we noticed one doctor palpitating Davin's head, he ordered a CT Scan on his head and a kidney ultrasound.  Sometimes with ear deformities there may be something wrong with the kidneys.  I don't recall the doctor telling us that he was ordering the CT Scan but we knew about the kidney ultrasound.  We didn't think anything of the palpating of the head and continued holding and ogling over our new son. 

Meanwhile, no one ever told us what Davin's condition was, just that he was deaf.  We ended up finding everything out on our own, thanks to my uncle's girlfriend who searched the internet that Saturday morning and called my mom and told her the name of his birth defect.  It was called Microtia.....later to find out he had Aural Atresia too (normally comes along with the Microtia).  As soon as I had a "name" to the condition I haven't stopped researching since. 

In the NICU 2 1/2 hours old

About noon (ish) we had another storm of emotions rush through our room, some of the NICU doctors came in and said that they were calling in the head Neurosurgeon from Children's Hospital, Dr. Steven Ham, to do surgery on Davin.  The CT scan showed a skull fracture on the left side of his skull.  The skull fracture was caused by the traumatic delivery and the forceps that were used.  SO 12-13 hours after Davin was born he had surgery to lift his skull off of his brain.  The CT scan also showed that he had a hemorrhage on the right side of his brain.  Dr. Ham didn't do anything about the hemorrhage, he said that it should go away by itself.  Davin then had another CT scan on Sunday (the next day) to see how everything looked.  The right hemorrhage was smaller and they saw one on the left as well, it wasn't detected in the first scan because the skull was covering it.  I love Dr. Ham!!!

Davin's incision 2 day's after surgery :-(



Davin was discharged about a week later.  In the hospital we noticed that the left side of his face was droopy, you could really notice this when he would cry.  His left eye wouldn't open, everyone at the hospital said it was from the swelling from the surgery and it would get better when the swelling would go down.  We took Davin to a ped opthamologist when he was 10 days old and learned that he had third and seventh cranial nerve damage from the skull fracture.   We had to patch his good eye to strengthen his left eye.  If this would not work he would need surgery to correct it or else he would go blind.  It worked thankfully, the opthamologist was amazed at his recovery!!  

My maternity leave was anything but being at home blissful with my newborn.  It involved many doctors visits (specialists, ENT, Audiologist, Neurologist, Opthamologist, as well as meeting with the Early On program through the School District).  It really was an emotional roller coaster.   

Now fast forward two and a half years and we have a very happy, bright, joyful, loving, HEALTHY boy, with, might I ad, an amazing personality!!!!

~Davin~

Here we are....blogging

Well here I am starting to document our life for all to read lol!!!  I have been wanting to start a blog for awhile,  just wasn't sure if I would have enough time to keep up with it, but here we are, I am going to give it a try!!!  I will try my hardest to keep up with it but if I don't that's ok too. 

I mainly decided to do this to document our journey with Davin. I know our friends and family will like to keep track of what's going on with his progress.  I do update a lot on Facebook but will be more in depth in here.  I think that it will help me too with dealing with everything that we will be going through.  It's going to be a long and stressful couple of years to come.  We really do appreciate all of our friends and family's support through it all, you have no idea!!!

This Blog is titled "Davin's Adventure ~ From Little to BIG Hearing Ears", so it will be about that, but I will also be posting random things about our family too.  This really is a family adventure, it affects all of us!!  What we go though together as a family makes us stronger!!!

With Love,

Shannon