Wednesday, April 23, 2008

Down to 6 days...

So, we are down to 6 days. Brianna is starting to get worried about the surgery. She is mainly concerned with the IV. She doesn't like needles. She keeps asking me what she will hear afterwards. I tell her that she won't hear anything anymore, but she still asks. I wonder if she really understands that. She asks if she will hear herself talking. She wants to know if she will hear me, or her teacher. I just don't know how else to explain it to her.
Now that we are almost there, I am scared. I don't know if I should admit that or not, I don't want to upset anyone else. All the "what-ifs" are going through my mind. And of course they aren't the good what-ifs. Will this work? Will she even wake up? Will her face be paralyzed? What am I doing to her? Will she be disfigured? Will she resent me for this decision? I can barely talk about the surgery without thinking about these things. I don't really know why I am feeling these things now. I have been so excited for Brianna. Now, the excitement is gone, and it's just fear for her. I just don't know what to do with all these emotions right now.
On another note, Brianna's school called today. I guess some of the staff there wanted to do something for her and our family. So they are holding a dress down day in honor of Brianna. All the money they will raise for it will buy a grocery store gift card. That will be a huge help. It's amazing how much all this is costing us. I am so grateful for their caring and generosity. It's just amazing that people that you don't even know, can care about what you are going through.
I guess it's times like these when you really see that people care. Even strangers. I wonder if Brianna knows how much people love her and care about her. I can't wait to tell her how much I love her and have her really hear me. It's been so long since she has really heard anything. I really hope that day comes for her. (And for me). What I wouldn't give to just let her hear. I would give anything of myself to make her able to hear again.

20 comments:

Abbie said...

Hi Michelle! It is okay to admit you are scared. I was 27 when I got my implant and my mom didn't handle it well. She didn't admit that until months later that she didn't want me to have it done but she is glad that I did now. Let me see if I can answer some of your questions because you seem to have asked a lot of the same questions I was wondering.

1. CI's do work with a lot of work. There has to be dedication to AVT in order for it to work.

2. They hook up a facial nerve monitor to your daughter to monitor just how close the surgeon is to it. It sounds off if he gets too close therefore minimizing the risk of any facial paralysis.

3. It might be difficult in the beginning and she might not want to wear it but the more she does, the more things will same normal. It took about six months for everything normalize for me.

This time next week she will be up and running around! Hang in there Michelle!

Val said...

Hi, I'm Val, my son was implanted at age three and a half and my daughter received one implant last year and the other one the year before that and she's four and a half now. I know it's scarey but the surgery really isn't that bad, before I had my c-sections I was more worried about the I.V. too. Yesterday as I talked to my daughter on the front porch w/her back facing the road...she turned around because she HEARD the quiet car going by...you'll be amazed daily, trust me!

Bill and Shelly said...

I found your blog while looking for other cochlear implant children. Our daughter just had her 2nd implant surgery on Monday. She had her 1st one done at 2 in Jan 2005, since then she has made amazing gains and will be going to K this coming fall in a totally oral classroom. We have a blog of our own if you want to contact us. krullfamily5@blogspot.com

Hetha said...

Hi, I'm Heather, mother to Ethan. He is 2.5 years old and has bilateral cochlear implants. He has 2 surgeries, one at age 13 months and the other at age 25 months. He recovered from both procedures quickly and easily and hears amazingly well now. Best wishes to you and your adorable daughter!

K.L. said...

Being scared is only sensible. But you are doing the right thing. She will adapt to hearing very quickly if you take it slow, and keep the levels comfortable for her.

Children usually do way better with surgery than adults. They can rub a topical pain killer on the skin before they insert the needle, if you ask ahead of time.

She may even be able to wear her hearing aids after a couple of days, until the hook up.

Deep breaths, and a nice cup of hot chocolate. For both of you. It will do wonders.

Tales from the CI Gal said...

Hi Michelle,
I'm Valerie and I have bilateral implants. I had surgery on July 18, 2007. I am one of the few that had them both done the same time. Most comments are right on target. I will add that the wrap she will come home in is heavy. Write down any information, don't try to remember everything. Ask how long she has to wear the dressing wrap. My hubby said three weeks.....it was less than 3 days.

I will check back and keep us up-to-date.
valerie

Amy said...

Hi. My name is Amy. My husband blogs a lot about our 16 month olds bilaterial implants. I do have a blog, but he seems to do a better job keeping up with her on the net. http://markmoore.terapad.com
I wanted to let you know our daughter was implant two months ago and activated one month ago, and she is doing great. She is SO vocal now. She is not saying words yet because she is so young, but boy does she like to hear herself make noise! It is the best sound in the world. I will keep up with your blog and defiently be remember all of you next week as you go through the surgery. It is the BEST thing in the world you could ever do for your little one. I am so glad we made the decision to do both sides to begin with. Please let me know if you have any questions.

Landon's Mom said...

Just wanted to say good luck with the surgery - we'll be praying for you and Brianna. The surgery is definitely harder on the parents than the kids. By that night he was playing peek-a-boo like nothing had happened to him. Our youngest has been activated with bilateral Freedoms for just over 5 months. We have a blog for him if you would like to check it out that has pictures from his surgery and also the video from his activation - they should be under the October link. Please feel free to contact if you have any questions or just want to talk.
Jen
www.buzzsjourney.blogspot.com

Nicky said...

Hi Michelle, I'm Nicky mum to Tom who has bilateral implants. We are British ...but don't let that put you off!! I know exactly what you mean about being scared, Tom had his first implant surgery 2 months after contracting meningitis so to be honest that one went by in a complete haze of stress and hospital stays. The second one however was very different, I spent the night before going through what could go wrong. Nothing went wrong and Tom loves his implants and I am sure it will be the same for your lovely daughter. We also had to raise funds for the surgery and aftercare but it was/is so worth it. My husband has just put a video of Tom's second year with CIs on his blog (I have a blog too but it's a bit lacking in input - Tom keeps me busy!!) so check out www.mysontom.com
Nickyxx

MameYokum said...

Hi Michelle,

Like Abbie said, I did not handle her CI surgery well!! Even though she was a tad older than Brianna, I was just as frightened and nervous as you are now. All the pros and cons and things you don't really understand stares you in your face. I used this time to figure out what was to be done if it didn't work. After that was done, I started to feel easier that I still could help her. Of course all the nerves and hives I got were moot!! You are a Mum and we are like that and it is normal. As far as the IV, Abbie hates needles also, A LOT!!!! When she was young, very young, I explained to her that she will feel little stick and it will help her feel better. She calmed down for me.

Sincerely, Abbies Mum, Fran

Elizabeth said...

Hi, Michelle and Brianna,

I am a contributing blogger on www.cochlearimplantonline.com, and about a month ago, I wrote a post about what it was like for me when I had the chance to actually observe a cochlear implant surgery inside the OR. The post also addresses some myths and facts about how the surgery is conducted, and there is a link to a captioned video of a live CI surgery.

Most importantly, please know that fear is totally normal and healthy. This is a big decision, and you'd be a little crazy NOT to worry about it. All the same, try to focus on the end result, which will be the beginning of a wonderful hearing journey for you and your daughter. You'll be in my prayers.

Happy Hearing!

EAB

David said...

Hi Brianna's Mom. I am 2 weeks post CI surgery and one week away from activation. I am very excited, and I can tell you that Brianna will get more excited as her activation day nears. I was not afraid about surgery. Abbie doused water on all my fears, and explained every step so there were no surprises. I actualy had very little pain and went home about an hour out of pre-op. Just try to enjoy the ride if you can. Brianna's world will be open so wide in about 5 weeks. "Nothing but net" with the CI's turned on. I have been reading so much about them, so much positive stuff I can't tell you how giddy I am. You will have no regrets. Brianna will one day give you the mother of the world award for helping her get this done.
Your family will be in my prayers and thoughts fo rthe next week. Please keep us posted.
If you have any questions at all, I am not an expert, nor am I activated, but please do not hesitate to email me at poirierdave@rogers.com
Warmly,
David

Drew's Mom said...

Hi Michelle,

My son Drew received bilateral implants last June - hard to believe it's been nearly a year already. My husband and I worked so hard, going through all of the research, evaluations, testing just to get to a surgery date, and then when it was facing us we were scared to death! We knew it was the right thing for Drew and for our family, but it didn't make our fears go away.

We have a blog on Drew's journey. If you would like to talk or email me, please feel free to do so. We'll be thinking about you and Brianna as you go through surgery.

Drew's Mom

Naomi said...

Hey Michelle, my son was implanted at age 2, now almost 16. His implant just opened so many doors in his life.

I was terrified about handing "my baby" over for surgery...well we were all exhaused from lack of sleep and after one nights sleep, he was careering around the joint like nothing had happened! I think you will find the surgery harder for you than for Brianna.

All the best, we will be thinking of you...

debbie said...

Hi Michelle,

The time is so near for the surgery. I hope we get in early to see Bubbles on Snday. I can't wait to talk to her. It's really hard to tell her how much we love her and want the best for her. The surgery will open so any opportunities for her. Her personal safety will be improved as will her whole life journey. See you soon. Remember to ask the doctor to rub the topical cream on her before the needle stick. A good idea is to write down some notes. See you soon.

dad said...

Hi Michelle,

Just wanted you to know that you are making the right decision for Brianna's future. You're not the only one who's nervous. Brianna is a tough little girl and she will be just fine. See ya Sunday.

love dad

Jodi Cutler Del Dottore said...

HI Michelle,
Abbie led me to your blog, which is so touching and reminds me a lot of what I went through pre-surgery. Ours happened fairly quickly so I didn't have as much time to second-guess as you seem to have. Stay strong and unwavering, it's normal to be scared. You have made the decision to go forward, trust yourself and your judgement and most importantly keep the faith. Your daughter seems like a wonderful, strong little girl and your Dad...his letter made me cry. It is so important to know that our families support us. YOU are a very fortunate woman and very loved, which lets me know that you WILL get through this. Keep blogging, it helps get a lot of those fears out. Hugs from Italy!!! Jodi

Jim said...

Hi

I am Jim who don't have cochlear implant but wear hearing-aids. I know who have cochlear implants and many of them are successful. I am happy that we live in a time when medical technologies are improving.

Being a parent is NOT easy and I know its hard. I have the strongest respect for parents of deaf children. I will be thinking of your family.

Jim

leahlefler said...

I can only begin to imagine the stress in the few remaining days before surgery! We're in hearing aid territory (moderate loss as of the last ABR), but your journey will help other parents one day soon. Pretty soon the surgery will be done and you'll be on the countdown to activation day. Sending some *hugs* from Western New York!

Li-Li's Mom said...

Hi Michelle!

Oh, I'm so sorry to be posting so late, but was away last week and didn't have a chance to answer Abbie's call for support until now ... and today is the big day!!

Our daughter Li-Li received her cochlear implant on the right side just this past fall, at the age of 18 months (we had hoped they would do both at once, but sadly, our hospital doesn't except in special cases).

What a day that was: we went in with the same fear and concerns, especially since our curmudgeonly but oh-so-brilliant surgeon was strong on all the what-can-go-wrong and weak on shoulder-patting, and the morning of surgery seemed to be filled with a never-ending stream of doctors (her surgeon, his attending, the anesthesiologists, among others) who each checked to be certain I understood the medical risks and to verify that I understood we were there. My favorite part was when our doctor came in and with a magic marker, signed the right ear -- just to be certain everyone was planning to do the same operation on the same ear.

The worst part for me wasn't the anxiety during surgery, but the night after surgery: we remained in the hospital, which is a bit scary in itself, but very safe, and my daughter had a bit of a rough night -- as you can imagine, it can be quite uncomfortable and yes, that IV is an awful thing, but if you can be there throughout the night to hold her hand when she wakes, that's the most wonderful healing there is.

I was nearly paralyzed with fear (although I tried not to let on). But everything you do in life is a risk, every time you walk out your door and enter a car or cross the street, every time your child takes a bite of something new. I remember a brilliant and wacky Australian film called Ballroom Dancing that has a great theme: "A life lived in fear is a life half lived!" Your fear is completely understandable, but you are very brave to not let it hold you back.

Our little one was laughing and up and about the very next day, racing up and down the hospital hallways.

It's such a personal decision for each family, but in our case, I have no regrets other than not doing it sooner, and we delight in every little word that comes from her her mouth, every response to sound. More importantly, she delights in those moments, and at 2 years old, she signs for her CI processor when it's off -- and even places her own coil on her head -- and smiles with delight every time it's turned on. We thought that would be a struggle, given that she regularly tossed her hearing aids, but have had no wrestling with the processor!

We have what are called "CI moments" all day long, every day. Each one on its own is worth this very tough day and night you are going through. Hearing Li-Li roar back at the monsters while watching Monsters, Inc on a long car trip. Watching Li-Li make the sign for music and begin "conducting" with her arms when I turned on music (behind her back) during dinner. Hearing a little voice call out "Pop-Pop, up" to her grandpa, ducking when she follows up a priest's sing-song incantation with with a very loud "Blah, blah, blah, blah" in the his exact tone and pitch during a large family event, and watching an entire section of the church burst into laughter. Hearing that bell-like voice demand "more cheese please" in the aisle at Whole Foods or "tiger!" upon seeing a girl with an orange striped shirt. Activation, momentous as it is, is nothing compared to those every day moments.

I wish you a very speedy recovery and much bravery!

As Leah said,now you have the wonderful anticipation of counting down to activation: the fun begins tomorrow!