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Caleb’s Story

Caleb was born 12 weeks premature due to severe pre-eclampsia. Caleb spent 51 days in St John's Hospital NICU, and suffered from Grade III and IV brain bleeds, had two blood transfusions and battled jaundiced for a great length of time. However, his lungs were well developed for only weighing 2lbs 2oz at birth, and he was only on the ventilator for his first 24 hours. Caleb was giving the Newborn Hearing Screen and failed it twice. I will never forget how we were told this. We arrived one evening for our regular visit, and the nurse on duty, who wasn't familiar to us, said "You know about the hearing screen, right?" To me that meant she was asking us if we knew about the test in general, so we said "yes". Her response was casual, "yeah, he flunked it twice". We were silenced. What? Please repeat that? I told her that we were NOT aware that he had received the test. She handed us a pamphlet and told us that we would need to have a test, she couldn't remember the name of it, but this brochure would explain it. Our family has no known history of hearing loss. We were just told that our baby is deaf, and handed a pamphlet. I asked to speak to someone about this and we quickly heard from an audiologist. She explained that the test is pretty generic, but if a baby fails, he is referred for the ABR, and she explained what that test is. He would be required to have this one month post his due date, which would be in October. It was only early August.

At this test, he had to be asleep, so he was given a bottle prior. He stayed asleep for most of it, and the audiologist, Ginger Derrick at SIU, was able to get all of the left ear and most of the right ear completed before he woke up. The look on her face during the test brought tears to my eyes as I held Caleb and watched him sleep with the probes stuck all over his head. She was going to give us bad news. And she did. Her diagnosis was that he had profound hearing loss in both ears. We would still try hearing aids, and he was to be fitted with these right away. These tiny little things were a headache to try to get in and keep in, and the high pitched ringing from the feedback was annoying, to say the least. He would quickly outgrow the molds about every two months and we had to return to get new ones made. We observed no responses at home. The ones we thought we observed were mere coincidences. His vision is so good, thankfully, that he could detect so much peripherally, he didn't miss us when we were off to the side banging pots and pans, like I think all parents going through this try. We made it through the holidays, and eventually quit fighting with the hearing aids. He was referred for another ABR, this time it would be sedated, and if there were no significant changes, we would need to talk about what our next step could be. I had already started researching cochlear implants and was pretty sure this was the route we would take. My husband Cory put it simply "if you have trouble with your eyesight, don't you get glasses?" Well Caleb has trouble with his hearing, so we will get whatever he needs to 'fix it'. SIU had new equipment coming that would test at a higher frequency, so his next ABR wasn't scheduled until 4/05. He would be 10 months old by then. It was a long wait, but after the test, we were told that he did have one response in his right ear. However, this was at about 115dcb, the highest the machine went. We were immediately told that he is a candidate for the CI, and if we were interested, we could get the process started. We were also told that the ENT at SIU was now doing CI's, so that was an option. From what I knew, she had performed this delicate surgery once...on an adult. We weren't prepared for Caleb to be a guinea pig, although we are confident in this physician's abilities. We instead chose to go to Children's in St Louis.

We met with the team there starting in June, and after more tests, Caleb was scheduled for surgery in late November of this year. It seemed so far away, but we were told that there was a good chance it would get moved up to earlier. We received a call within a couple of weeks that they could do it at the end of October, if we wanted to. Want to? Are you kidding? Of course! 

On 10/27, Caleb received his CI. He was 16 months old. Dr. Randall Clary performed the surgery and was so cooperative with this nervous mom. I was allowed to accompany Caleb into the OR and be there until he was completely under anesthesia. The procedure from that point until finish took about three and half hours, and we received telephone updates twice during the surgery to let us know it was going well. Dr Clary came out to talk to us when it was over and said that it was a success - thus far. Caleb would be wheeled into recovery and we could see him soon. In ten minutes we were called back to see him. His temperature had risen quite a bit so they had him stripped trying to cool him. I wish I would have thought to tell them that he is a mini-furnace, and they could do without all of the warming blankets and space heaters in the OR! After he cooled down some, we went to his room. So many family members traveled to be there this day. It was a rough night, but the next day he was on his way back to his smiling self. Finally around 11am we were sent on our way back to Springfield. He did so well the whole way home, only crying a bit here and there, looking so uncomfortable with his head wrapped up. Five minutes away from home, the anesthesia hit him and he started vomiting profusely. We were worried and Cory was ready to head straight to the ER, but then it stopped. We went on home, and when we got inside and put Caleb down on the living room floor, he started to crawl, albeit pretty unsteady, to play with his toys that he missed so much. By that night he was smiling, and by the next morning, you would never know the kid just went through surgery! Three weeks later we returned, on Caleb's 17mo birthday, for the initially stimulation. His reactions were pretty subtle, and he mostly would just turn towards me, cowering somewhat, when it was getting uncomfortable. The programs were set pretty low to start, and we returned the next day for more of the same. That first day at home, we were busy with the loud voices and noises, but saw nothing. The next day, his reactions were more obvious, even crying a few times. I never thought I'd be so happy to see my son cry! This meant he could hear! That next week at home, the reactions were still very subtle, barely noticeable, but after returning for more adjustments a week later, the reactions were becoming more obvious. He'd smile when the CI volume was increased (and on occasion cry), he'd turn his head when we'd intentionally drop his blocks onto the wood floor, and blink at other loud noises. We are on our way! This is the point we are at now, and we will return in January '06 for further increases in the programs.

We are considering getting the other ear implanted, and continue to do research on this possibility for him. At this time, he is receiving Speech Therapy twice a week and sees a Developmental Therapist-Hearing Specialist twice a month, both through the Early Intervention program. We continue to learn to sign and sign with him, and he is slowly learning signs, too. So far, he has mastered Milk, More, Eat, and more recently has learned All Done and I am pretty sure Mommy! It has been a long journey, and will continue to be one, but what a ride!

Hope you enjoyed the read.
Cari, Cory and Caleb Hoedebecke

"Life might not be the party we hoped for, but
while we're here, we might as well dance"



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