The latest on the greatest Little Man!

All Right!!!! There is nothing that could ever express my relief and joy today. Shiloh had his cochlear implant surgery Monday on his right ear and he did phenomenally!!

Shiloh was born profoundly deaf in both ears. After a lot of research and discussions we decided to give Shiloh the opportunity to speak and hear and chose for Shiloh to be implanted with a Cochlear Implant. Here is how a cochlear implant works and basically what it looks like. the piece on the top left is the part that gets implanted in his head. The remote control will allow us to change the programs without taking it off his ear. The piece in the middle is what will go behind his ear, and the piece on the bottom right is the magnetic piece that will go on his head. We chose the piece behind his ear to be similar to his skin tone and then the other piece to be similar to his hair color.



We found out about 8 months old that both his cochleas had Mondini Malformation. Typically, the cochlea has 2.5 turns, Shiloh's only has 1.5 turns. This presents a problem with the Cochlear Implant - as it's success can depend on the number of electrodes on the strand that the surgeon can insert into the cochlea. Shiloh's right cochlea was better formed than his left cochlea, so it was a better choice to implant. We went through nearly 2 months of waiting for a CI (cochlear implant) company - Med El to determine whether they could 'customize' a strand that would better suit Shiloh's cochlea. In the end they could not. We decided upon the Cochlear Nucleus 5 system. (see the link to the right for more information). This implant actually has a slimmer profile which was a great bonus (less drilling into the skull to make the implant sit more flush).

I can not even go into all the roller coasters we rode over the past 13 months. Mostly because right now I am so happy with Shiloh and so hopeful that I can't even think of those rides right now.

Back to the surgery. We got to the hospital at about 830am. We answered the same questions about 10 times to 10 different nurses, happily. The anesthisiologist came in to explain what she would be doing, then Dr. Bauer (Shiloh's ENT, the surgeon) came in and answered last minute questions, and put us at some sort of ease.




Shiloh was given some Tylenol and some anti anxiety medicine. He quickly went from hungry and fussy



to just a chill little boy!




At about 2 months old I noticed Shiloh had this little 'bump' on the right side of his head. We checked with his pediatrician and Dr. Bauer - they both were not extremely worried about it. My only concern was that it was right in the spot where the processor would go in his head. When Dr. Bauer came into to talk with us before the surgery we asked what his plan was in the event it did pos a positioning problem. he said he would just remove it. 20 minutes after they took Shiloh back Dr. Bauer called us from the OR to let us know he would have to remove the nodule which ended up being a scalp lesion. So instead of 1 incision he has 2 (no big deal). Shiloh went back to the Operating Room about 11am, Dr. Bauer's team did such a great job calling us every 30 minutes to an hour giving us an update. It was nearly 4pm when the nurses told us he was finished and he's doing fine...absolute relief.....



Dr. Bauer and Shiloh's audiologist - Lisa, came in to talk with us for sometime. They gave us the good and the bad. The bads were not so bad and could not bring us down from our high. They informed us that they were able to insert all 22 electrodes (good) but they were only able to get 16 out of 22 electrode responses (good/bad) and that on several of the 16 they were getting the responses at the very maximum level (bad). None of this was extremely bad. Within 3 months of having the implant activated Shiloh just may start responding to those other 6 electrodes and those electrodes that he is only responding at maximum level he may give better responses once he's used to it. Of course they did the testing while he was under. And it was only testing, could turn out differently once he's activated and gets used to it. Also the fact that he was responding at maximum level to some electrodes meant that instead of wearing the behind the ear unit he would have to wear a body pack - seriously the least of our worries. But at first we will try to wear the behind the ear. Dr. Bauer explained that typically for a child to achieve speech (which means being able to hear) they must get 12 electrodes, so we are already ahead of the curve with 16!!!!! We will have a long roade ahead of us but we are super excited about the possibilities.

After about 45 mintues - hour of Dr. Bauer and Lisa the nurses said Shiloh was nearly ready to come in. Dr. Bauer and Lisa headed out and Michael and I waited nervously for our baby. And then it happened, from inside his hospital room I heard a very faint cry and my heart told me it was my son. I rushed out of the room with Michael right behind me. And around the corner came my son in a nurses arms. He looked pitifully helpless and I just wanted to rip him out of their arms to protect him. But they insisted I sit down to hold him. They laid him in my arms and situated all the tubes attached to him. He held on to my shirt and I felt all the stress and pain start to fall away. He was back with me, safe and good.



He looked at me and cried and held on a minute longer and then Michael peeked his head in front of Shiloh's face and Shiloh clearly wanted his daddy. Michael scooped him into his arms pushing the nurses aside. (he never really cared for what people told him to do). Shiloh melted into Michael's arms and was definitely happy and content.



The next couple hours were a little rough - just to see your child working through the confusion is difficult. Clearly he wasn't in pain, as he was still drugged heavily. But he definitely didn't understand everything. Shiloh stayed connected to his Daddy while he was awake. I got a few moments over the next 24 hours (mostly while Shiloh was sleeping). Shiloh started to show his personality again when he woke up at about 1am and was ready to play. Michael went and broke into the 'activity room' and took some toys for his son to play with. :) :) :)



Shiloh had 1 cracker (that he ended up throwing up)while in the hospital. He drank tons of apple juice and was happy with that. By the next morning he was really coming back to life - other than being quite groggy. He loved his hospital bracelet and was not happy to get it taken off!



I took Shiloh for a walk to the lobby to see the fish tanks. While in the lobby, Dr. Bauer was walking by and checked him out. He was proud of Shiloh - and even admired his own handy work (which we were super happy with!) He said after the xray (which would be used to document the location of the implant) we could go home!!!!!! And that we did! Home home home!!!!!



By the second afternoon home he was trying to play every second he had awake...but funny enough would randomly fall asleep (middle of playing).



It also wasn't until this afternoon that he ate anything else since Sunday evening. And honestly at that point it didn't bother us that it was a turtle cookie (courtesy of our great friends Kristen & Billy). The cutest little bouquet of cookies!






The incisions are perfect and tiny. His hair will grow back to cover them - but before it does we are definitely getting a mohawk! The top incision on the left is where the scalp lesion was removed. Then you can see the incision behind his ear where the implant work took place. Where the scalp lesion incision is - is just about where the external sound processor will go (the magnetic piece).




It will be another week for the incisions to heal, and then a week after that before we go to see his audiologist (Lisa) to get the external pieces and turn them on (or activate them). She will start giving him access to sound at that point. He will usually wear a hearing aid in his left ear, but for the next couple of months he will not be wearing the hearing aid in order to get him to depend more on that cochlear implant. We will have auditory verbal therapy every Friday at 9:30am. These therapy sessions will mostly be to teach us the tools we need to work with him through the week. His therapist will also use this time to assess Shiloh's progress.

We are so excited right now and so happy and so thankful. The outpour of love and support from friends and family. There is no way we could have made it through the week without all our friends checking in on us and giving us their love. Nor could we have made it without Aunt Bri Bri, Brendan, Drewie, my father and Dororthy keeping Mikayla so happy and entertained while we were with Shiloh. How lucky lucky lucky we are. I love my family, my children, my husband, my life.