Friday, October 29, 2010

Post-Op

Jack had his CI surgery on Monday; it was successful with zero problems! What a relief. We checked into the hospital at 5:30 a.m. and he went into anesthesia around 7 a.m. They began actually operating at 8, and were done by 9:45, which was a little faster than we were expecting. We got to go back to the recovery room to see our little man, thinking he would be awake, but he was fast asleep, knocked out by all the medicine. The nurse asked if we wanted to hold him or keep him in bed, and I said "hold him!" Little did I know I'd be holding him for the next hour and a half, arm cramping, while he snored loudly. This kid showed NO signs of waking up anytime soon. So we opted to let him lay in bed so we could sneak off to eat some lunch. Jon and I ate cheeseburgers, relaxing some, afterwards returning to our boy who was still asleep. We wanted to return home the same day so we could rest at home instead of a hospital, so the nurses said it was time to wake him up and get him to eat a popsicle. He was so adorable and groggy, with this head band wrapped around his head. He looked like a ninja or the Karate Kid. He gladly sucked on the popsicle and kept it down. So we were released and left the hospital around 2 p.m. We had definitely been there long enough!

Jack slept about 4 hours on the couch when we got home, for which I was very grateful. I slept on the floor next to him and enjoyed a lazy afternoon. He never cried once, but did have a glazed-over, mean look in his eye attesting to his discomfort. He needed to keep the headband on, which held the gauze in place over his ear, for the next 24 hours, so we decided to have him sleep in our bed. I knew that thing would never survive a night alone with Jack. He had already tried to rip it off once. What a restless night! We have a king-size bed, but you wouldn't believe it sleeping with Jack. He started off next to Jon and ended up next to me, with me having a total of 10 inches of space before I fell to the floor. And he was so restless, moving and shifting and sighing for hours. I eventually moved to the couch, leaving Jon to fend for himself. Jack slept peacefully in the early morning hours, at which point I was so grateful it was just about time to get up and take off that headband!

So we took off the headband, and the incision looked pretty good. Truthfully I was expecting much more swelling and redness, but he looked like normal Jack, just with an incision by his ear. Tuesday he was still tired, and laid in our bed all morning (which I kind of enjoyed!) and he napped in our bed too. By the afternoon he was more energetic and played with toys, but took rest breaks to cuddle Mommy (enjoyed that too). And by Wednesday he was his normal Jack self; you would never guess he had surgery 2 days prior. I took a picture of "ninja" Jack on my cell phone, but not our camera, so I'll have to figure out how to get it on the computer.

In a little less than 3 weeks, Jack will see his audiologist and get "turned on," meaning he'll get his processor and have it adjusted. It will be another few weeks before they turn him on fully- where he hears everything; this is so all the sound won't overwhelm him. We are excited to get the equipment and see the difference in Jack. Thanks for all your support and prayers; they mean so much and we're very grateful. In the meantime, check back for Halloween pictures!

Friday, October 22, 2010

It's time to share

I have been terrible lately with blogging, and I am determined to catch up and re-commit myself. The main reason I haven't updated is because I wasn't ready to share. Over the past several months we have been worried over Jack's speech development, because he wasn't talking. He would babble for several days in-a-row, then quit for several weeks, never progressing past that point. We finally had a hearing test done about 2 months ago, and the results were shocking. Jack has a severe to profound hearing loss, which basically means he's deaf. It was really hard to hear such a diagnosis and I was in denial about it for days afterward, refusing to believe it could be that bad. I mean, how could we have not known? His newborn hearing screen was normal and he babbled as a baby, and he is very convincing at following directions and doing what you tell him. It turns out, he's super smart and figures out what you want thru other cues.

I wanted to post an entry about this for weeks now, but couldn't make myself sit down and do it. I guess I wasn't ready for the rest of the world to know yet. If you know me, you know I have a tendency to down-play things so I can remain more optimistic about it. I'm not the type who calls all her friends and cries about it. When Jack was born, he stayed in the NICU for 1 month and 1 day, and nearly died. I never told any one about the seriousness of the situation until after he came home, when it was all clear and no worries. I think that's something I need to change; it's just not healthy to deal with it all on your own. Anyways, the doctors suspect that his hearing loss is a result of the aggressive antibiotics received during the NICU stay. It's frustrating to think about that, but it's easier when I consider he wouldn't be alive if not for those medicines and treatment.

So what's the plan for Jack? He has been in hearing aids for 7 weeks now, and is scheduled for a cochlear implant surgery on Monday, the 25th. I am thrilled that we have this option available to us; with it, Jack will be able to hear within the classified "normal" range, and I am told that he will even be able to hear whispering. With his hearing aids, Jack is in a mild to moderate hearing loss range; the difference in him the past 2 months has truly been amazing. He knows my voice now and looks for me when I talk. You cannot imagine how much you take hearing for granted, until your child cannot hear. It's a miracle to me and I feel true joy when Jack responds to my voice. With just 2 months of hearing Jack is learning that sounds are important and have meaning. He is imitating everything we do, and tries to talk like we do. He knows that specific sounds are appropriate for the toys he plays with; for example, cars go "beep, beep" and airplanes go "ahhhh" (according to his speech therapist). He says "mama" for "more," and "ba-ba" for "bye-bye." He is thriving with the limited hearing he has now. That is why I am so excited to see him once he has full access to sound, with his cochlear implant. He is having his left ear done first, and then, within a few months, we will decide if we will implant the right ear.

I feel as if I were being prepared for this years ago. I grew up with a dad who was very hard-of-hearing, who eventually got a cochlear implant. Additionally, I took ASL (sign language) classes for 2 years in college. For a normal hearing girl, I have a fair amount of knowledge about the deaf community and sign. I remember learning all about deaf culture in college, and specifically about this controversial procedure with a cochlear implant. The deaf see it as a negative, as if you were taking one of their own deaf children away from their community. Sign language is a valid option, and if it were 20 years ago, I would have zero problem with Jack signing. Our family would learn to sign and communicate in that way. But the fact is, it's not 20 years ago and cochlear implants are very, very good. The implant inside the cochlea is designed with extra "space" so no further surgeries are needed to update the device; you update the external processor (what's worn behind the ear) and that's it. Why wouldn't I choose this option for my son? The fact is that I want him to live as normal a life as possible. I don't want him to struggle in school or to feel like an outsider. How often do you see a person signing, and you go and strike up a conversation with them? You don't. You don't know how. That person is perfectly capable and social, but you don't know how to communicate with each other, without feeling awkward. With this implant, Jack will never know this dilemna. He can be mainstreamed in school, and talk with his hearing friends. I am so grateful for this technology, and feel so blessed.

We have excellent medical people, including his audiologist and speech therapist to guide us through this process. We have a family who loves Jack more than the world, and gives us continual support. We know this journey will be long and at times, difficult, but I know that everything will be okay and that most importantly, Jack will be okay. I thank Heavenly Father that Jack will never know the difference between natural hearing and electronic hearing. For him, it will all be natural and the sounds lovely. He can grow up in primary and sing during their sacrament programs. These are all things I look forward to. He is truly so smart, and has such a happy, joyful attitude, that I know the sky is the limit for him.