Man! The highs are highs!!!!!
Friday, February 6, 2009But today Shiloh was definitely responding to these tests, so he id definitely hearing something with the ha's in!!!!!!!
Our audiologist had me sit in a booth holding Shiloh on my knees (facing outward). On the left and right side about 2-3 feet away were large speakers and video screens. In front of him was a teddy bear in a dark box that would light up to get his attention forward at times. The first few times her voice came through the speaker he didn't really show any response. And right before the test she checked his ears for fluid and he does have fluid on his left ear. So we didn't expect a response from that ear.
Then there was one time where she came over the speaker and talked and he looked in that direction. But we weren't sure if it was a response or if he was just turning his head. Well, when he looked she played a video clip of finding nemo - this gave him the message that if you hear a sound and you look in that direction you will get this 'reward'. And when he'd look in a direction and there was no video he learned there was no reason to look so he'd focus on the teddy bear in front (can we say Pavlov?). So the first time he looked he smiled at the video but we still weren't sure if he heard her. Then nearly almost every time after that if she spoke into the right speaker he would immediately look. He never really responded to the left speaker (because of that fluid in his ears).
BUT WHAT MAKES IT SO GREAT THAT HE IS RESPONDING FROM HIS RIGHT EAR .... is that his right ear is the ear that had absolutely NO response when he was un-aided. The left ear had some responses at a very severe hearing loss level. So for the WORSE ear to respond to 70 dcb, which is just above speaking voice - IS AMAZING!!!!!! Even though there is no guarantee that he is hearing everything she said, he is hearing some sound. And that's what we want, just knowledge that he's not completely isolated, that in some way he hears us walking by him when he's in his swing, or playing on his belly. Just something is wonderful.
I can not tell you the pride I felt when he continued to turn his head. It's so far from being a 'hearing' moment, because there's no way to tell what he heard. But seriously, just something is beautiful.
That little man is still so incredibly perfect. AND ON A FUN BABY NOTE, little guy has 2 freakin teeth!!!!
What happened next?
Wednesday, February 4, 2009It took, scratch that, it takes a lot to remember - he's okay, it's all right. There are so many more worse things that could be going on. It's okay, it's really okay. I won't tell you that I am at peace with any of this. I'm not, and I have days where I still run through every question in my head...including how and why. But each time I realize there are no answers to them. But I still ask myself.
It's a hard pill to swallow. As a parent, as a mother, you never accept that something that affects your child negatively is not in some way your fault. Most the pain I feel is over the pain he will feel. The stress and struggles he will have on top of everything else. It breaks my heart now writing this. But through the pain I realize I also have a job to do. I have to do that much more to give him every opportunity possible.
Over the past 4 months Michael and I have become more and more educated about hearing loss, speech therapy, hearing aids, cochlear implants. So many things that never even crossed our minds before. 1 month into his diagnosis we have been able to get hearing aids on him, we are exploring therapy options and needs, we have called, written, talked to every single organization, doctor or person we needed to. Each day that passes we become more and more at ease. Not at peace, but more at ease.
His hearing aids are overwhelming in the amount of information about them. There are so many therapy options out there for his speech. And no one is able to tell us - "This is what is best". Everyone has their own agenda, their own opinion and motivations. We're not experts in this field, but somehow we have to make decisions over what will impact him for the rest of his life. This isn't just which formula he should have.
Before his hearing aids, he would respond to NO sound whatsoever. There was never confusion over - did he hear that? He didn't hear ANYTHING. Now with his hearing aids....we just don't know. There are times we think he's responding, but then there are times we are all but yelling in his ear and he doesn't even blink. Somehow we feel more comforted with the hearing aids in because we feel like at least on some level he hears some sort of sound that let's him know he's not alone.
We go this Friday for another 'test' with the hearing aids on to determine what exactly is he hearing - if anything. Then we decide on therapy. If we already know he's really not getting any sound with the aids we start to discuss cochlear implants. We are pretty sure we will go that route. This is a hearing world. But there are so many variable to him being able to get cochlear implants. Maybe by the time he'd even be eligible to get them something else is available or not. Oh man, who knows.
Everything is up in the air one day, and then the next I feel like we have things figured out and then the next moment it's all in the air again. The only thing that I know is that when someone asks me about him...my first response is - he's perfect. And he is, he is perfectly perfect. He's so precious and happy and wonderful and smiley and lovey and just perfect.
Bilateral Sensorineural Hearing Loss
Tuesday, February 3, 2009Sensorineural hearing loss occurs when there is damage to the inner ear (cochlea) or to the nerve pathways from the inner ear (retrocochlear pathway of the acoustic nerve) to the brain.
Sensorineural hearing loss not only involves a reduction in sound level, or ability to hear faint sounds, but also affects speech understanding or ability to hear clearly.
Sensorineural hearing loss cannot be corrected medically or surgically. It is a permanent loss.
D-Day December 30, 2008
Shiloh has hearing loss in both ears that is not temporary.
Severe to Profound in his left ear and Profound in his right ear.
Shiloh is deaf.
Getting to D-Day (Diagnosis Day)
We were re-scheduled yet again...and this time we kept him up for hours upon hours! But, again he woke up halfway through. They were able to test one ear - and this is the first near confirmation we received that it was in fact NOT just fluid in his ears due to a C-Section. The audiologist actually did a tempanogram - which basically checks for pressure on the ear drum which would indicate fluid on his ears. No pressure, no fluid, yes hearing loss! It makes my heart drop to my stomach remembering that day. But not confirmation on severity...so we were rescheduled one last time.
November 2008 was a blur and yet went by in slow motion. First, we had the final confirmation ABR at the hospital completed. The audiologist at the hospital said he had moderate to moderately-severe hearing loss in both ears. She made a lot of bold statements, most of which at the time were hurtful and I was sure were not accurate. I was not confident in her assessment and I quickly scheduled an ENT appointment that would re-test the ABR.
We made it to the first ENT appointment, both knowing what the truth was, but neither of us would fully admit it to the other. At that appointment, Shiloh's ENT discussed the process we would go through and possible outcomes, and indicated a re-test would need to be done before proceeding much further. Of course time was not on our side and we had to 'schedule' that test later...right after Thanksgiving. But we didn't make it to that ABR, Shiloh was in the CHOA-Scottish Rite for the week of Thanksgiving. He had RSV which later turned in to Pneumonia. His hearing loss was minimal during that week. I still can't describe him during that week without tearing up. I'll just say - you would never think that they actually make hospital gowns, IV's and breathing machines for little tiny babies, but they do. Michael and I, and then Mikayla after two days, spent that week clinging to his little hands while he fought to breathe. Five days in the hospital, we finally got to take him home, breathing on his own and eating about ONE OUNCE of food a day...but home and on his way to healthy lungs - again!
But because of the hospital visit and the audiologist we had to push back the ABR re-test. They had already discussed the use of hearing aids by this point, and possibly Cochlear Implants. But we couldn't get anything done without the re-test. And after 2 unsuccessful attempts, we finally finished his left ear re-test on December 23rd and then had to schedule his right ear re-test December 30th.
Birth Day - September 26, 2008
Shiloh Shane Stover
Born Friday, September 26, 2008, 7:36 AM
7 lbs 3 oz and 19.5 inches
Moments after he was born we were asking what were we ever going to do with such a tiny baby!!!!! (Mikayla was a whopping 10lbs and 21 inches long)! Michael held him for a few minutes, I got to see him and he was whisked away. It wasn't until I had been wheeled to a recovery room with no husband and no baby that I was told he had to go to the 'transition nursery'. Apparently, Shiloh was so excited about seeing us that he was breathing twice as fast as babies were supposed to. Normal breaths per minute for infants is around 50 - 70 bpm. Shiloh was taking 140 breaths per minute.
My doctor explained this was common with C-Section babies (a phrase we would hear too many times in 4 days). She said because he didn't get the 'push' through the birth canal his lungs didn't absorb that fluid that was causing the rapid breathing. She said he would probably be in transition 2 - 4 hours and then come back to us. After 8 hours they transferred him to NICU, instead of back to our room. It wasn't for nearly 18 hours that I got to actually see him, touch him, hold him, feed him. After 36 long hours in NICU he got his breathing under control and was brought to our room. The breathing problem would present NO long term problems! Yay!
But while in NICU they determined he had a heart murmur - "common in newborns, especially c-section babies". After much drama a cardiologist came in to discuss this 'heart murmur" with us. Come to find out this common c-section heart murmur was actually Atrial Septal Defect (ASD). A whole present in the heart in everyone, was 7mm instead of 3mm. And of course this ASD is (say it with me) "common in c-section babies". But good news is in a majority of children this problem corrects itself. If it doesn't it is a quick easy catheterization at 5 years old to close it up. Of course if he requires the catheterization he will not be able to participate in high air pressure changes. So no, Shiloh can not be a fighter pilot. But I would also have a great excuse why he can not go sky diving!!!! We'll go back for a follow up at 1 year old.
Through that 'drama' I mentioned earlier we also had a brain scan to confirm the ventromegaly that presented itself at 19 weeks in utero was cleared as we were told at 27 weeks. It in fact was, his brain looked perfect - and if I remember correctly the doctor must have passed on from the neurosurgeon something like "This has to be the most intelligent brain I've ever seen, in fact I can imagine only parents of a child with a brain like this could have a higher IQ" - if memory serves me, of course!
And then there were two smaller issues that were thrown in our face by some dramatic nurse practitioners. The first being that his hands were positional...you know when babies are in utero, it's snug in there - sometimes when they are born their hands stay in the position they were in while in utero. Not a big deal, we stretch his hands and they are perfectly fine. The other thing was his little tongue needed to be snipped underneath because the little flap that holds the tongue in the mouth was too short on him. That was snipped at almost 2 months. He was quite fussy for a couple days, but no problems there.
This was all while in the hospital right after his birth...and then there was the thing that we were least worried about - and mostly because (come on I know you know what I'm going to say) "IT'S COMMON WITH C-SECTION BABIES"....Shiloh failed two newborn hearing screenings. Everyone just kept telling us it was because he was a c-section baby and he still had fluid in his ears. We were told we should come back within 2 weeks to have his ear re-tested by the hospital audiology department.
And then a day earlier than we were supposed to...Michael packed us up and rushed us home! We retreated into our house with our new family of four. Happy, content, less worried and relieved to get away from the hospital.
Stressful, but beautiful! Through it all Shiloh was a gorgeous happy baby for us and we were beyond excited for Mikayla to have her "blueberry".
And So We Begin....
But one day he is going to be ALL boy...and I expect this will be more suitable...
