Activation Day

Dear Abel,

I used to write to you monthly. In my letters, you were my baby- an extension of my own soul. I loved and cherished your first year of life. Your birthday came and went and typically that's where I would stop writing so often. Your story of your babyhood just didn't feel quite done yet, though. I knew I wanted to write you again. When we found out your were deaf, I felt so scared that I wouldn't be able to provide for you what you needed. My sign language was/is limited and although we've been learning together, I knew you needed more. I yearned for you to understand us one day, to be able to talk to your brothers, and enjoy the simple pleasures of music. I was so glad to find out you were a candidate for cochlear implant surgery. That excitement diminished as I learned more about the procedure. It was intimidating. I started second guessing our decision even after your surgery. I can't tell you how many times since you were implanted a few weeks ago that I thought to myself that I wish we'd never done the surgery to begin with. You were perfect as you were anyway.
Activation Day rolled around and I was so excited. I wanted so badly for this to be a happy day for you, but you were under the weather with an ear infection and I ended up crying a lot that day. I hate to see any of my babies in pain. Still, you pressed on as you always do. You're such a tough kid already! You've been through a lot in your short time here and you have taught me that I can be strong, too. We activated one side and your reaction was much like we expected:

Bless your sweet little heart. It turns out that hearing for the first time is frightening! But you know what? You're enjoying it now. I see you getting super still, focusing intently on making sense of your new found hearing and I'm so happy we decided to do it. It feels like I can teach you now. Another door has opened for you. You and I will always have our bond that allows us to communicate without words or signs, but now when your family talks to you, you can listen. I have faith that you will speak, too. Your appetite for learning inspires me, too. You've given me so much in your 21 months!

I love you so much. Happy Hearing Birthday to you!

This is when we activated the other side. No tears!

The Bionic Boy- post surgery notes from Mama

I keep thinking this will all get easier to deal with. I look at how far we've come as a family in the past year and think it must. Less than a year ago, we started accepting the fact that our dear Abel wasn't progressing like a typical babe. Later, we found out he was deaf. Meanwhile, we were struggling with the financial issues that come with buying a house, paying for graduate school, and planning for a new baby to join the family. Pile on top of that, the stress of carrying another human, birthing him, and nurturing him while running the other two kids to doctor appointments, therapies, and "school" and I was feeling so stretched. Did I mention I tried my hand at starting a business, too? It was all too much. I just felt like eventually this season of our lives would slow down and get easier. I wasn't consciously creating a timetable for this, but I must've because somewhere in the back of my mind, I thought life won't be as scary once Abel has his surgery. I knew it would be a long road with many hours of speech therapy and driving to audiology appointments. But I also thought that the scary part would be over. He is out of surgery. He did well. Finally.

But you know what? The terrifying part has just begun. I didn't prepare myself for what life would be like post surgery partly because the people I spoke with and read about their experiences with the surgery said recovery was normal. I guess Abel's recovery has been fairly normal, too but he has had some other symptoms that are concerning. So what has it been like?
The ride home from the hospital that evening was rough. We were all so tired from a long day and had a three hour drive ahead of us. Abel was super groggy and nauseous (yes, he threw up on me) and so so pitiful. Even under anesthesia, he had quite a 'tude. He threw his paci and juice cup no less than 50 times on the way home. He was not happy and had a hard time sleeping in the car.
Post Surgery Day 1

We roused him around nine that morning and started trying to get him to eat and drink since he hadn't in so long. He tolerated a drink but was in no condition to eat. We could hardly get him to move honestly. He laid on the couch all day and it seemed as if his spirit was just completely broken. We changed his diaper, gave him meds, and moved him when he needed it (all things he would usually protest but was too tired to care). He fell in and out of sleep all day. We turned on cartoons and he camped out on the couch. His eyes floated toward the t.v. but he wouldn't lift his head to look at it. It started to alarm me. I wanted to get him moving and create some normalcy (b/c he has never spent more than 20 minutes straight in front of a t.v.) so we loaded our two youngest boys in the stroller so we could go for a walk. Still, I noticed his head was flopping around like a newborn. It was as if he couldn't control it. I thought maybe it was due to his large dressing so we decided to take it off an hour or two early. When we took it off, it didn't improve his head issue but we were pleased at how the incisions looked.
Day 2
He was up crying through the night so I think he had some pain. We brought some medicine in his room that morning and began the process of cleaning his head and ears. Applying creams. That sort of thing. He was not happy, but we were feeling hopeful because when we scooped him from his crib, he was standing up! That was a complete turn around from the day before. When we finally got him cleaned and ready for the day, we took him to the kitchen where he ate his first good meal in days. Afterward, we put him on the couch again because we noticed that his balance was still very much off. It broke my heart to see him want to move and play, but then get defeated when he couldn't because he was stumbling and falling so much. I even texted my mom and sister expressing my fears that we had done the wrong thing. I started to question everything. I took to facebook and asked for prayer because I truly believe in the power of prayer. By the end of the day, he was getting around so much better. I could tell he was still in pain, but there were smiles that day and he played and toddled like one and a half year olds should. That night, his temp spiked and we were worried again.

Day 3
J had to go back to work but I was thankful that he woke Abel up and helped me get him ready by taking care of his wounds, administering medicine, etc. I'll be honest- he has done most of the work. I get so upset trying to hold an angry, sad and in-pain toddler down to get these things accomplished and J has been so thorough in taking care of our boy. I'm lucky to have him. I expected the day to be so hard, but it wasn't. Kinley went off to Mother's Day Out and Merit slept much of the day so I could focus my attention on Abel. He did well. I noticed early on that he was leaning in on his right side and that worried me, but it slowly went away as the day wore on. His ears sticking out/swelling seemed to look better as well. He started walking more normally throughout the day and we have hope that he will continue to improve.

This has been emotionally taxing on me. I wish I could take his place. I wish I could take his pain. If only I could be deaf instead. But I also know that he is now a part of the bionic community...and what a great one it is. We are so grateful for this miracle procedure and we're hoping it proves to be one for us. More than anything, though we want Abel to be his happy, feisty self again. God is The Great Healer and I know He has him in His hands. Thank you all so much for caring about this journey and for joining us in praying for this sweet child. THANKS SO MUCH!

The Big Day

If you're reading this on Friday, there's a good chance that Abel is in surgery at this very moment. Surgery that will open up his head and eventually, hopefully give him the ability to hear. Please pray. It's Wednesday night as I write this and I'm a nervous wreck. In an effort to focus my head, I thought I'd answer some questions I've gotten recently about the procedure.

How long is it going to take?
We are told it should take between 4-6 hours to implant both sides. That does not count time spent in pre-op appointments and recovery.

After the surgery, will he just be able to hear?
No. Actually, he will still be deaf. After surgery, he will need time to heal. Two to three weeks after the procedure is activation day.

Is it all inside the head or ear? Can you see it?
The inside portion will obviously not be visible, but in order to make the cochlear implants work, processors will attach via magnet on the sides of his head and rest behind his ears. When the processors are taken off, he will not have access to sound. He'll still be deaf. Processors typically aren't worn around water or at bed time.

What do you think his first word will be?
You know, I don't even let myself think of this. You might think that once he is turned on that he can start talking within weeks, but it's not that easy. His brain has to be taught what these noises mean. I can't even explain it, but I do know that I'm going to have to be realistic about this process or I'll go crazy. I'm trying to take it one day at a time.

Are you going to record it?
As I mentioned, he'll be activated weeks later. That means, they'll begin the process of turning on his sound. These are all the cute videos you see on youtube and facebook of the kiddos hearing for the first time. While these are all adorable (and often make me cry happy tears), they also aren't typical. It's much more common to have a crying reaction or no reaction at all. Think about it...it's probably alarming to suddenly have a new sense. To hear for the first time when you're less than two years old? It must be frightening. Still, we will totally record this awesome moment in our lives. It will be magical, no matter how he reacts.

I'm keeping the faith.

Jeremiah 29:11 says, "For I know the plans I have for you (Abel!) says the Lord. Plans to prosper you and not to harm you. Plans to give you hope and a future."

Surgery Up In the Air

Can I just talk honestly for a moment? Abe's surgery is coming up- at least I think it is. For months and months we've had this plan set in place, we've made hotel arrangements, babysitters, and scheduled off work. The plan was to implant Abel sequentially- meaning that he needs both sides implanted (bilateral), but we were planning on breaking up the procedure into two different surgeries spaced three months apart. We chose to do this because of a scary statistic we'd heard regarding balance issues when the surgery was done with both ears. We felt confident in our decision. Now, just days before his first surgery, we are having second thoughts. We've since done much research and asked around for professional and parental opinions and we've almost changed our minds. We want it done at the same time now. There are a whole host of pros and cons that I won't get into. Anyway, because I need that plan set in place- because I was counting on it- I feel unnerved now. More so than I already was. Yesterday, J called the surgeon to tell him we had changed our minds and talk to him about rescheduling or keeping the same date and implanting both that day. Just typing that out feels like fifty pounds of weight on my shoulders as it will likely change all the appointments we have set in place over the next few months. The Army taught me that I can't plan. I mean, I can, but I should have loose expectations of those plans coming to fruition. I don't know why I thought that when we parted ways with the Army that I would have more control. Anyway, I'm so nervous. Nervous that his surgery will be pushed back even further. Nervous what the surgeon, case worker, and audiologist all think about our decision (or indecision). Nervous that something will go wrong. Nervous that I'll never be able to speak to my second born and have him hear and understand me. Parents of kids with cochlear implants keep telling me- "Just wait! You will be amazed." I hope so. Right now, all I know is that Abel cries and screams at everything. He can't tell us what he wants so he just cries out of frustration. His signing is decreasing as we are trying to focus on listening and I feel as if I'm a huge disservice to him all around. I have so much guilt. The other parents I know who have a child with hearing loss do not have two other babes that need a lot of attention. They are working at home with their child in addition to the years of therapy that this sort of procedure will require. I don't know how to balance trying to help Abel "listen" and eventually speak when there are two other very loud little people thrown into the mix. It has been my thought since day one- I wish I could help him. I feel like I can't.

Exciting News from Vanderbilt

I promised my facebook people that I would write tonight about all the good news we got with A's doctors. That was before I drove three hours home with a fussy toddler. Now, I'm yearning for a hot bath and my bed. Ever faithful, I'll tell you all the good news without rambling too much...

The first bit of surprising news is that his hearing aids are actually aiding him. That was unexpected with his level of deafness. He is severe to profound in both ears without the amplification, but with the hearing aids on he is hearing at the level of moderate to severe. This means that if we are yelling in his good ear, he probably hears it as a whisper and only parts of the word. For example, if we yelled "ice cream" in his good ear, he would hear "Iii eee". Obviously this is not enough for speech development, but it is getting him used to experiencing sound. I was amazed at the difference at his testing with his hearing aids on! The audiologist was, too.

Little man was sedated again for an MRI/CT scan. He did so well. What a trooper I have! After the sedation, we carted him around to all appointments with little in his tummy and no nap. I expected it to be absolutely awful (and it was at moments) but for the most part, he soldiered on. I was nervous about the MRI/CT for obvious reasons, but today calmed my fears-

Dad to the rescue during a particular fussy appointment

We met with the surgeon who will perform the implantation. He told us:

1. Baby A is a candidate for bilateral (meaning both ears/sides) cochlear implants.
2. He also believes it unnecessary to seek genetic testing for a cause. He told us that from the information he has from birth history, infancy, and the recent tests that there's no reason to suspect any other underlying problems. In other words, some people are just deaf and there's no other reason for it. That made my mama heart happy. In the back of my mind, I was worried about a syndrome or something that we just hadn't discovered yet so it set my mind at ease a little. In addition, I was worried about Baby M.
3. The surgeon also wants to do the surgery ASAP. We do not have a surgery date yet, but they are working with our insurance for approval. He said the earliest he could get us in is likely August, but definitely before Christmas. It will depend on how fast we can hear back from the insurance company.
4. Lastly, he told us it was up to us if we wanted to implant both at the same time. I always thought, "Why wouldn't anyone want to do it all at once?" I assumed it was an infection worry or longer times under anesthesia. I was way off base, there. The doc said that there was a 10% chance that he could lose his balance and never regain it if both ears are done at the same time (If only one is done and balance is lost, the other side compensates and often balance is restored). That number seemed so high to us. It scared us enough to ask to have the surgeries done separately. It's not completely ideal, but he will have his left ear (bad ear) done first and then the right ear will follow within six months. It makes me a nervous wreck to know that he'll be having surgery twice, but that's what we've decided is best for him. For those of you who do not know, he will get his implant but won't be activated until 3-4 weeks later.

It's going to be a long road for him. We're excited for him, though. The speech therapist and audiologist are confident that he will excel with the implants. We were in the appointment for speech analysis and I was amazed at his ability to repeat and mimic. He does attend to sound when he hears it with the hearing aids and he is doing so well with sign language, too.

Picking out his processor colors

I'm proud of my boy and am so incredibly grateful for all your prayers for him over the last five months. Please don't stop. God is working a miracle in this sweet kid and I'm happy to be his mama and witness it first hand.