Implants and Golden Nets

I can't believe that it has already been more than a month since Calvin's surgery! I have wanted to write about it but we've been so busy since we got home from Utah. I was crazy enough to start a new job the week after his surgery. I have no idea what I was thinking! I am back into commercial design at Babcock Design Group. I love my job, and the people I work with but holy smokes! I tried to hit the ground running and I think it hit me back twice as hard. I keep telling myself to just keep running and that someday I will get caught up, be on time, look like I know what I'm doing, have a clean house, get all the bills paid, be patient, be strong, have all the answers that my family thinks I should know, and finally feel like everything I do is enough for someone somewhere. Until then, I try cherish every minute of the madness I create.

On to Calvin's surgery. I honestly didn't know what to expect so I was surprised by some things, but overall relieved that it went so well.

Reading his favorite book, Brown Bear.

We left for Utah on Thursday, April 4th. Calvin was in a good mood and so happy the entire drive there. He's not usually a fussy baby, but he does have his frustration threshold ( like all kids) and confining him will certainly get him there a lot faster. Car seats, high chairs, strollers, they're all his enemies. But not then! He was happy and easygoing.  Aaron and Carli were a little anxious to see us leave, and Carli cried more than once as we were getting ready to go. It really is touching to see how much they love their baby brother. It does a lot to ease my fears that I have failed as a mom. At least they're capable of love, so I've done something right, right?

On the drive down I wasn't much of a travelling companion for Rob. I had my nose stuck on my phone. I couldn't help it for all of the sweet and touching messages, e-mails, texts and facebook posts we were getting. I would finally get all of them responded to, and 10 more would pop up. I wish I had better words for how this made me feel, but it really was very humbling. I don't think that Rob and I are extraordinary people. We try to do the best that we can with what we have, but on that Thursday, we received such an amazing outpouring of love and respect that it truly made a difference in the way we approached the surgery. I wasn't scared. I wasn't even nervous. I was excited.

Poor Rob had been so sick for a week before the surgery. I was afraid he wasn't going to be able to go. Although he got well enough to drive down with me, he was still so sick, and that lasted until he was able to hold Calvin after the operation. Sometimes I don't pay enough attention to his feelings and give him credit for what he's going through. I forget that I've had a bunch of kids before Calvin, and that I have experienced parental anxiety enough to have built up some tolerance for it. If not a tolerance, at least a familiarity with it. This is Rob's first child, and everything is new. Add to that a child with special needs, and it's bound to wreak havoc on any decent father's nerves.

We got into Salt Lake about an hour and a half before Calvin's Pre- Op appointment so I finally dragged Rob around Temple Square. I think the idea of the Temple is still a little overwhelming to him, but he seemed to appreciate the beauty of the space. It was such a gorgeous, sunny and warm day. The flowers and trees had started to bloom and I'm grateful that we were able to steal away a moment of peace and respite before we went on with the rest of our little journey.


Our pre- op appointment went really well. Calvin is kind of like a rock star everywhere we go. He's such a happy baby and he has this little vibe about him that people seem so drawn to.  He's kind of the remarkable patient for most of his physicians. His diagnosis is rare, and at one point an implant didn't even seem possible. I am grateful for the insight that one Audiologist shared with us that led us to Dr. Shelton and his team. Knowing what I know now, I understand why the process to get to this point was such a difficult one with so many ups and downs. Having the right Doctor who was willing to educate us and encourage us when things seemed difficult has made such a big difference.

Calvin and his first crush.. He even
signed "Flirt" and "you" to her! No joke! 

After the post op appointment we met my cousin at her house for dinner and let Calvin play with her adorable little boy Henry. I think they completely wore each other out and I am so glad he had such a fun time. I wish I had taken a picture of it! My cousin Amberlie and I were very close friends growing up, and I am so glad that we've been able to reconnect as adults. I had my first three kids a little early in life and I never imagined we would have little ones close to the same age. She's a wonderful mother though and I am glad to have her as a friend during my round 2 of parenting little ones.

Surgery Day! Check in at Primary Children's 

A little nervous now... 

 The next morning we drove to the hospital in pouring rain. We checked in at Primary Children's Hospital on time and were kind of rushed through the check in and pre- op part. I wasn't very happy about that. I was about to turn my baby over to have a major operation and I was being rushed through it like it was no big deal. Things slowed down though when we got to our meeting with the anesthesiologist. I have a genetic disorder that's pretty rare and dangerous for anesthesia. We had no idea if Calvin has it too, and didn't want to find out the hard way. So, while the anesthesiologist was on the phone trying to determine what blood work to do to find out if he too has the same deficiency, I got to watch him play. He was completely oblivious as to what was going on, and not even uneasy at that point. He was happy and laughing and for a few minutes I started to doubt what we were doing. He is communicating just fine with us. He signs like crazy and he's happy. He could care less that he hears or not. There wasn't anyone pressuring us into going through with the surgery. I really had to take a step back mentally and remind myself of why we had chosen this path. It wasn't to "fix" anything that was fundamentally wrong with Calvin. It wasn't because I saw him as less than whole, or unintelligent. It wasn't even because I was so vain or desperate that my life wouldn't be complete if he didn't hear my voice. Frankly, he has an advantage that no one else in my family does. I'm not always nice. I'm not always a good mom. I make mistakes and say things I regret. Calvin doesn't have to hear me at my worst and I am forever grateful that there is one person in this world who is immune- in at least some way - to how much I can fail those around me sometimes. Deafness isn't always a curse. There are a million and one beautiful sounds that I am sad that he can't hear. But there are just as many awful sounds that I am glad he has never had to process.

So content to try to figure it out. 

             I didn't want to upset Calvin though so I tried my hardest to internalize all that I was feeling. I was so confused and frustrated that I felt that way. We had spent almost a year making this decision and now I was unsure, and second guessing myself. I looked down at him playing and started to cry. Not because I was scared but because of how much I love my son. I don't know how or why it came to be that four of the most beautiful souls on earth were trusted to someone like me. It is something I will never understand. I remembered then that we made the choices we made for Calvin out of love. That's not anything I have to regret or feel sorry for.







All things considered we held it together pretty well until we handed him to the anesthesiologist. As soon as he took Calvin around the corner, Rob and I held onto each other. It was a rough moment. I don't mean to be overly dramatic, but that was a pivotal moment. I was handing my baby over to someone and asking them to very carefully and skillfully change something completely fundamental about him. Going through this last year and the surgery wasn't just a big event that happened in our lives that we can glaze over and skip the details. It was made up of hundreds of gut wrenching snippets of time. Some moved so slow it seemed like the earth stopped turning, some flew by so fast we didn't even have time  catch our breath before the warning they brought blew up in our faces. One moment to the next things are so completely different and never able to go back to the way they were. I know we aren't the only family who has endured this. I am all too aware of how small our problems are in the grand scheme of things. But when you're suddenly faced with a situation that reveals all your weaknesses and fears all at once, it leaves you feeling so vulnerable and alone.
        The surgery lasted two and a half hours. It was hard to let my mind settle, and I could tell that Rob was exhausted. Being sick for over a week had really taken a toll on him. We sat down in the surgical waiting room and he quickly fell asleep. He's been so strong for us this whole time. He has been my rock when I needed one. He's Calvin's best friend and an amazing Dad. My kids love him like he's been with them always and my heart hurt when I saw the lines on his face.
       Before I knew it, Dr. Shelton was suddenly sitting in front of us.He snuck in so quickly and quietly that it startled me when I realized he was looking at Rob and I with a very sympathetic, bemused look on his face. We must have looked pretty haggard by that point.  I woke Rob up and he turned on his hearing aids. I signaled Dr. Shelton to wait until I heard the familiar little chime that let me know his "ears" were working and he could hear now.
     We sat forward in our chairs and listened very intently to Him describe the surgery. It went fairly well for the most part. There were a few small complications but they were able to be compensated for. Before surgery, we had known that they anatomy of Calvin's cochlea was abnormal. As it happens, when Dr. Shelton opened an entry into his cochlea, spinal fluid gushed from the opening. A part of Calvin's ear that goes from his Cochlea to his brain had been enlarged. We knew this from the scans that had been done. What we didn't know is that it was filled with fluid. Dr. Shelton was able to close this off with some muscle and Calvin should do well. He has a slightly higher risk of contracting meningitis now, so we'll have to monitor fevers closely. Then Dr. Shelton explained to us that because of the deformity of his inner ear, he was only able to get 20 out of the 22 electrodes into his cochlea. This will still give him an adequate level of sound, and we were cautioned not to worry too much.
    In the final part of Dr. Shelton's conversation with us, he let us know that he had tested the implant in the operating room and that there was a good response from the nerve, indicating that he should be able to hear fairly well with it. I was so relieved. It was such a feeling of mixed emotions! This finally meant we were on the downhill side of our little journey and I felt like I had climbed Mount Everest. Then I remembered Calvin was still in the OR and that he was having his ear literally sewn back onto his head and I was instantly unsettled again.
     Thirty minutes later the recovery nurse called to let us know he was starting to wake up. I couldn't sprint down that hallway fast enough! I heard my poor little guy crying before I even went through the heavy double doors into the recovery suite. It was a little bit of a labyrinth to try to find which crib was his. There were a lot of little ones in that surgery suite that day though, and my heart went out to every one of them that I passed. I finally found his corner of the suite and had to brace myself when I saw him. He was in a lot of pain and completely out of it. He was frantic and screaming and it took a lot just to try to find a way to hold him.

 I have never intended to use this blog to bad mouth or criticize anyone, but I was a little frustrated with the recovery room nurse. As a parent, I expect all medical personnel who work in a very specialized part of health care to have at least a functional knowledge of what they are doing for their patients. However, when I was struggling to comfort him she looked at me and said, "well, he's probably hearing things he's never heard before and it's scaring him." I just stared at her like her head had fallen off. It completely dumbfounded me how she who was here to treat children that are recipients of cochlear implants was completely oblivious to how they even work. I took a deep breath and did my best to educate her. I informed her that it's not possible for him to hear with the implant alone, and that he will have to have the receiver and processor attached, programmed and turned on before he can have access to sound. It was an eye opening moment when I realized that the misconceptions society has about cochlear implants are so pervasive that not even a registered nurse is immune to them.

At any rate, the rest of the evening was somewhat rough on my little guy. It took a lot from both Rob and I to get him comfortable. He cried a lot and didn't want to be held, but didn't want to be left alone either. My parents who were in town for a reunion came in to see him, and he was ok with Grandma holding him, briefly. After that he went right back to me and tried to settle in again.

A little later that evening he was feeling well enough to play around a little and sign to Rob that he was hungry and " I love you." 

I LOVE this picture of them signing to each other. The little foot on his Daddy's Tummy is something he does almost every morning when he's laying in bed with us.

Hugs from Dad make it all better

Grandma tucking her little man into bed and checking on him

This is such a sad little picture. He looks so sad and angry at me. 

He forgave me though and we snuggled from 9 pm until 6 am

After we were finally able to get Calvin's pain and nausea managed a little better, he crashed, and so did I. It had been a long, long day and I was grateful for the sleep. He was able to sleep through the night and didn't wake up even one time. 

The next morning I would have thought it a miracle if I didn't see it myself, but aside from the incision, and swelling, you would never have known he had surgery the day before. I have been told from the beginning of this process that the recovery time was nothing at all, but I was very skeptical. I just didn't believe that it would be that easy for him to feel well so soon. To me, it's a testament to how strong this little man is. He has hit some pretty big bumps in his short little life, and at every turn he has handled it so much better than I have.

After we left the hospital we headed to my Aunt's house for a little R'N'R, and then further south to meet up with my Mom and Dad at my Aunt and Uncle's house in Mapleton. Before we met up with them though, I had to introduce Rob to one of my favorite childhood memories... Glade's Drive-In in Spanish Fork Utah. The food now isn't as good as I remember it being when I was a kid, but the building is still exactly the same as it was then, and not much different than when my mom worked there in High School... way back in 1969.

 While we were at my Aunt's house I was still in total disbelief that Calvin had gone through that kind of surgery just the day before. He played with Grandma and Grandpa, Aunt Glenda's Dogs, my cousin and her girls... we even went to feed her Sheep and Horses. He was maybe slightly more irritable towards the end of the day than usual, but that's it. I am amazed at how resilient he is and how happy of a little boy he is growing to be. Despite everything he has been through, he is still just genuinely happy. I wonder if someday he will ever know how much he inspired, uplifted and kept me moving

The next day we drove back to Idaho with a very tired, sweet baby boy.  It wasn't without worry and stress though. When the Doctor took the bandages off  the morning after Calvin's surgery his ear wasn't in the same place as it was before. Inspite of my surprise, I had hoped that after some swelling went down it would have looked better. I wanted to believe I was overreacting  so we hit the road and watched him closely. As the trip went on though, I wasn't noticing any improvement. I messaged a few of my friends who have children with implants and they said they did not have that experience. I finally made Rob pull over and I called the Surgeon's office. I got in contact with the resident on call and he said that it was actually very normal and that over time as the swelling reduced his ear would move back to it's normal location. Even though I was mentally reassured by our conversation, I was still sick to my stomach. We had handed over a physically perfect child and had caused this to be done to him. I cried so hard out of  fear that he would never look normal again. Worse yet, we still had 30 days to go until we would know how much he would be able to hear with his implant or know if what we had just done was worth what we were now going through.

 We had not been warned at all that something like this could happen. It was a question I had never even thought to ask. I know quite a few people with implants now, and had never noticed that their ears were misplaced so it wasn't something that even occurred to me. I have tried to stay on an even keel and positive note throughout everything Calvin has gone through, but I can honestly say I felt bitter, angry and more than anything... guilty and ashamed. I thought of all the deaf individuals who have fought against cochlear implants and I finally understood why. I felt like I had harmed my baby by trying to give him the best opportunity possible,  at the moment, he was worse off now than he was before. I was so angry with myself my stomach was sour and I was sick. I could hardly even think straight.

It's times like this that I am incredibly grateful for Rob. I don't know how he did it, but even though he had many of the same feelings, he very calmly talked me through this. Eventually I was able to relax enough for him to drive and we were on the road again. Through talking with him, I realized that we had already passed the point of no return. Whether his ear ever went back to the right place or not, we could not undo what had been done, so we had better learn to settle our hearts with the decision that we made. I have always said that I hope that at some point, later in life, Calvin will be ok with the decisions we made for him when he was too young to make them. I want what's best for my son and although what I feel in my heart is best for him might be totally contradictory to what someone else would say is best for him. However, I know my baby and I know myself. I know what we as a family are capable of accomplishing and enduring. And just like earlier in the OR waiting room, I had to remind myself that what we did, we did out of love.

 I do believe that Calvin could have a completely wonderful, rich and full life without ever hearing a sound. I do believe that I could "get over myself and rise to the occasion" and effectively parent and advocate for Calvin. But, I am not the only parent he has. He has a wonderful Father, who is also deaf. It may only have been recently that he has finally come to terms with his hearing loss, but he is still deaf. This wasn't the case of two hearing parents who were afraid of raising a deaf baby. This was a careful decision with so many ups and downs that I can't even count them anymore. Rob knows better than I what it is like to be excluded from conversations, or to be ignored, made fun of, or thought of as stupid only because he couldn't hear. He knows what it is like to work for years just to be able to say the word "deaf" instead of "death".  He had the right to want and to provide something better for his son, and I support him because I love them both more than I can ever express.

We both know that an implant isn't a golden net that's going to catch Calvin and keep him safe from anyone's ignorance or cruelty. As a mother, I wish more than anything I could weave such a thing that would keep all my children safe and innocent forever. Every time their heart breaks, so does mine. But keeping them safe forever isn't a realistic plan.  We all have to endure pain to grow and as far as growing pains go, this was  the most  we had ever endured.  I looked back at my sleeping little boy and as I stopped crying, a beautiful thought occurred to me. Calvin has a net that has already been woven for him. It's not made of gold, and it certainly isn't impenetrable, but it is still strong. It's made of love, and hope and courage, and maybe that's enough. Maybe that's enough to catch him when I'm not strong enough to. Maybe it's the foundation that we've made for him to stand on later. Maybe I've given him enough courage that he'll be able to be strong even when I'm afraid. And maybe, for right now, I can fold up that love, and hope and courage and lay my head on it like a pillow when my heart has hurt too much for too long and I just need a rest.