Wednesday, December 12, 2012

6 week update

It has been 6 weeks since Hattie has entered into the world of hearing.  This has been, and continues to be an amazing process!  Cochlear implants are a miracle from God using modern medicine.  Even on days that I am exhausted from talking and narrating the most mundane daily tasks to her, I must remember the gift of hearing that God has given our daughter.  

"I will praise you, O Lord, with all my heart; I will tell of all your wonders.  I will be glad and rejoice in you; I will sing praise to your name, O Most High." Psalm 9:1

Hattie has been making great progress.  At our last audiology appointment she was responding to sound as low as 25dB in the sound booth.  This is amazing, as her residual hearing was as loud as 105-110dB before surgery.  Most of us, with normal hearing, cannot even begin to imagine what a change like that would be like.  She has handled this new change really well.  The smile I get every morning when I put her implant on is priceless!

Another great improvement has been the ability for Hattie to recognize and differentiate sounds associated to different toys that we play with.  One of our daily therapy activities includes me asking her to pick out a different toy by asking for it by name and then making the sound associated with that toy.  For example, "Hattie, where is your car?  Beep beep."  I have been trying to catch some of this on camera, but once my phone comes out she is a lot more interested in that than what we are doing :)  I was able to get this video the other day, however.  Now, before you watch it, bear with me...I am going to be a bragging mom for a second.  In the video I asked Hattie to find her train.  I was waiting for her to pick out her train toy that was laying in front of us.  However, my little smarty pants turned around and picked out her train book that we read over and over and over.  I felt like that was such a smart thing to do because we do not focus on that book when playing with her therapy toys, and she remembered that her train, or "choo choo" was in that book.


And one more video just for fun.  Last Thursday we started playing the "how big is Hattie" game.  I took this video on Saturday!  



I will completely admit that I think my child is very smart, but what mom doesn't :)  However, my main reason in showing these videos is to give you an idea of what we work on and to see how fast their little baby brains absorb new information.  Hattie's progress is just another reason why it is so important to have the newborn hearing screenings when a baby is born and how important early intervention is.  We are so thankful and blessed to have been able to provide Hattie with the best care possible as early as possible. 

Sunday, November 4, 2012

Activation update

Wanted to give a quick update on Hattie, as we have had a lot of people asking how she is doing.  As I stated in the previous post, after activation of her processor, it can take a couple months before she is at a hearing level that is appropriate for her.  Our Audiologist programs her processors and then gives me extra "programs" to go through in between appointments.  This means that as I move her to the next program her processor is slowly being turned up.

Because Hattie was able to hear with her hearing aids (limitedly), she is already familiar with sound and this has not been such a shock to her.  Consequently, we have moved through her first 4 programs very quickly.  I was able to see our Audiologist later in the week and she gave us 4 more programs to work through.  Today we are on the last program again.

When I am turning Hattie's processor up, the main thing I want to watch for is that she is not becoming upset and crying.  As long as she is handling each program well and I feel like she is not progressing anymore then it is okay to move forward with the next program.



Hattie has been turning to loud sounds, primarily coming from a toy, but is not consistently turning to me or Kevin's voice yet.  At first I was feeling really discouraged because I was looking for instant gratification with her implant.  As I have learned through this whole journey, and am continuing to learn, I need to continue to have patience.

I have been keeping track, daily, with what program we are on and any changes Hattie is making.  An exciting change I noticed was that by Friday (3 days post activation), Hattie had begun to experiment with new sounds.  This is a very exciting development and great reassurance that the implant was the right choice for her.

Hattie has always been very vocal and enjoyed playing with the intonation of her voice.  But, even still, she mainly would only say different variations of "ahh" and "eee".  At 10 months old she should have been babbling for awhile, saying "ba", "da", "ga", "ma" etc.  Well, on Friday I noticed that she is starting to experiment with saying all those things!  I couldn't believe it, because I was feeling like she wasn't hearing anything yet and clearly she has been, even if it is still quiet to her.  This is also very exciting to think that if she is already making this kind of progress now, what will she be doing once her processor is turned up to an appropriate level for her!

I will continue to update everyone as we have updates.  We are very humbled and blessed that people have taken an interest in Hattie's story.  God promises to always be us and never leave our side and that has been very apparent through this whole journey!

"...Never will I leave you; never will I forsake you."  Hebrews 13:5

Tuesday, October 30, 2012

Hattie's Activation



We want to thank everyone for all your continued prayers for Hattie during surgery and after.  She has recovered really well and doesn't even seem to realize that she had surgery!  

Today was activation, as most of you know, and it went well.  She didn't have a "YouTube moment", but that's why those videos are on YouTube in the first place :)  



Holly, our Audiologist, putting the processor on Hattie



We had prepared ourselves for not much of a response, especially because she has been responding in her hearing aids.  Our Audiologists are very conservative in the beginning as the child is getting used to wearing and hearing from the implant.  Her implant is set very low and will gradually be turned up over the next couple of months.  

If we are honest, we were hoping for a big moment.  But the fact that she didn't have much of a reaction is reassuring that she has been hearing this whole time with her hearing aids; hopefully, we can turn up her implants a little faster because of this.  

We will continue to keep everyone updated on her progress.  Thank you again for all your love and support!






Friday, October 19, 2012

Surgery

It has been almost 2 weeks since Hattie's surgery.  Hard for me to believe!  The surgery went perfectly, our surgeon said that everything went exactly as he had planned.  Total time Hattie was away from us was about 3 hours; I could not get back to recovery fast enough!  When I went back, she was sitting up in her bed, although a little wobbly from anesthesia, playing with all the wires and cords that were hooked up to her.  The nurses couldn't believe how happy she was waking up from surgery :)



Hattie had a Princess Leia-esque head wrap on after surgery.  Our surgeon wanted her head wrap to stay on until Sunday (5 days from surgery).  By Friday morning, she had pulled it off :)  Her incision looked fine, so we didn't have to go back in to get it re-wrapped.  She has really done a great job with leaving her incision alone and has been a tough little lady during recovery.  She has been fussier about her teeth coming in than she has with the surgery!

Hattie is wearing her hearing aid in her left ear still, and will do so until we activate the implant on her right side.  Activation day, for the implant, is October 30th; we are so excited!

We want to thank everyone for all their prayers, support and meals brought to us during this time!  Kevin and I are so thankful for our supportive family and our friends- new and old.  We are so blessed to serve a Heavenly Father that promises to give us peace and tells us to go to Him with all our anxieties and fears.  "Cast all your cares on the Lord and He will sustain you; He will never let the righteous fall." Psalm 55:22

Little black eye after surgery.  Still happy girl :)



Monday, August 27, 2012

Approved!!

I am sorry it has been so long since I have updated our blog.  I really have no good excuse, so I won't try to come up with one :)  We have had a busy summer with moving (twice!) and getting settled into our new home.  We really like North Carolina and have tried to be intentional about exploring the area and seeing what our new city has to offer.  Every Saturday we hit up our local farmers market for fresh, organic produce and end our visit stopping by a gourmet donut stand to reward ourselves for our purchases ;)

We have had lots of visitors lately and still more to come.  We are so thankful to have a house that will accommodate guests and want to keep an open door policy to anyone that would like to visit.

Hattie and Aunt Tay

Kevin has been working a lot and is really enjoying his program.  We have made some great friends through his program already; it has been nice to connect with people down here.  Hattie and I have been getting into a routine with her daily therapy (done by me) and weekly visits from our Auditory Verbal Therapist.  We have also kept busy with doctor's appointments and audiology appointments; however, we do manage to squeeze in some fun too!

Recently we completed our checklist of appointments, if you will, to confirm that Hattie is a candidate for cochlear implants.  Our last hurdle has been insurance.  The FDA approves cochlear implant surgery at 12 months of age.  However, many surgeons are performing the surgery earlier because studies have shown the earlier a child is implanted the better the results and quicker they catch up with their hearing peers.  We are wanting to have surgery done on Hattie right after she turns 9 months old.  We have decided to have one implant placed at a time, with the second implant being placed 3-6 months after her first surgery.  Authorization for the first surgery was sent to our insurance company last week and we have been waiting for the results.  Every insurance company is different on their approach to this surgery and we have been prepared for a denial to be given.

Ever since Hattie was born, we have learned what it means to fully rely on God and trust His plan for her life.  I believe this is true for every parent, but especially those that find themselves faced with a child that has a disability.  We have stopped trying to make sense of her deafness, and instead trust that God has a plan for it in Hattie's future.  We have been blessed to see His hand already in so many decisions we have had to make on her behalf and in her developmental accomplishments thus far.  Our prayer, during this time, has been to give us peace with whatever decision insurance gives us and to put total trust in God.

Well, today I received an email stating that Hattie's surgery has been approved by insurance for the date we have been wanting!  We are ecstatic!  We have been waiting since she was 2 weeks old (when it was confirmed she was deaf) to get to this point.  We are so excited to know that she will be able to hear our voices in a couple months and discover the sounds all around her.

Hattie's first surgery will be on October 9th and activation of the implant (when they will turn it on) will be about 3-4 weeks after.  This will give her enough time to heal from surgery before rocking her world with sound :)  We will definitely film activation day and share the video.  Thank you to everyone that has been praying for Hattie and Kevin and I.  We are so thankful and blessed to have you all in our lives.  Please continue to pray for Hattie and her upcoming surgery.  I promise I will do a better job of posting in here!



Monday, April 30, 2012

Connexin 26 and 30

I know it has been awhile since my last post; we had not had anything new with Hattie's hearing, which is good.  We have been able to increase her hearing aid wearing, so she has them in all day and they only come off when it is time for bed.  Since she has been wearing them more frequently, we have been able to notice more consistent signs she is hearing something.  At this point, all we are looking for is a startle, a change in her eyes, or a cessation of sucking on her pacifier when we are talking to her.  I have been told even hearing babies may not turn and locate sound until about 6 months.  We have been really encouraged with her progress so far.

In March, we saw a Geneticist and decided to have some testing done on Hattie.  Our reason for doing this was simply because hearing loss can be syndromic and a sign there are other issues present.  We felt if that was the case with her, it was best to find out now and be proactive in appropriate therapy.  They told us it could be a couple months to get the results back, so we were very happy to finally receive the call from them last week.  Our prayer this whole time has been that we are dealing with a single genetic defect called "Connexin" and not a syndrome.  

We found out that her hearing loss is genetic, as Hattie has Connexin 26 and 30--meaning she lacks the normal function of a protein which assists in hearing.  We now know this also means Kevin and I are carriers of the mutation and will have a 25% chance of having future children with hearing loss.  We had no known knowledge of this prior to Hattie's diagnosis and do not know of anyone in our family with congenital hearing loss.  Most likely this gene has been passed down through generations, but has not manifested itself until two carriers had a child together.  I've likened it to playing a slot machine where everything has to come together just right for this to show up.  The good news with being Connexin positive is it typically only effects hearing and she, otherwise, is a normal, healthy baby.

We are one month from moving to North Carolina and are getting very excited.  May will be my last month of working as a dental hygienist (at least for a little while).  It is bittersweet, but I am really looking forward to staying home with Hattie and being able to monitor her progress with listening and speaking first hand.  We have an initial appointment scheduled with our new Audiologist and ENT at UNC.  They have a very established system and it seems our transition will be as smooth as possible.  We feel very blessed and humbled with the way God's hand has been involved in our move and setting up care for Hattie.

photo courtesy of babysitter Darcy :)

Wednesday, March 28, 2012

Lots of Change

We have had a busy last couple of weeks in our family!  I went back to work from my maternity leave, Hattie started wearing her hearing aids and we found out that we matched at Duke University for Kevin's residency.  Phew!

I've been back to work for 2 weeks now- it's hard for me to believe.  This month Kevin has been doing research and has been able to do a lot of it from home, so he has been playing Mr. Mom :)  It has helped me a lot knowing she was with Daddy and getting some special one on one time with him.  Because I have been at work, Kevin has been dealing with her hearing aids more than me.  He has done a great job of making sure she is wearing them enough hours in the day.

Her cute, pink hearing aids

Some great news with the hearing aids, is that Hattie has responded to sound when wearing them!  So far, she has only startled if she has fallen asleep with them in.  She can primarily hear Kevin's voice because it is deeper than mine.  I know, because of this, that she is hearing when she is awake; she just hasn't started turning to the sound.  Since she is getting some sound then we know that at least one ear is functioning and that is encouraging for a future implant.  Hattie will get another hearing test at 6 months old when she is able to sit in a booth and see what sounds she is hearing.  At this time, she will get a CT scan of her ears to determine if she can get cochlear implants.  Until then we will continue with the hearing aids.

As I stated earlier, we found out a couple weeks ago that we will be headed to Durham, North Carolina this summer for the next 3 years.  Kevin will start his Internal Medicine residency at Duke.  I couldn't be more proud of all he has accomplished.  He has worked so hard during medical school and his determination and discipline has payed off!  This was our top choice, not only for Kevin's training, but because North Carolina is a top notch state in cochlear implants and speech/audiology services.  We feel so blessed that we are moving to an area that will provide Hattie with the best services during these next crucial 3 years in her development.  We had been praying all along that God would make it apparent where He wanted us for residency- He definitely did!  God is good!  I'll leave you with a cute picture of Hattie and Daddy on Match Day :)


Tuesday, March 13, 2012

Hearing Aids and Cochlear Implants

As I mentioned in the previous post, we met with an Audiologist last week to get impressions taken for Hattie's hearing aids.  She did a great job and slept through the whole appointment!  She will get her actual hearing aids next week.  We are looking forward to this appointment to begin her time in her hearing aids.



We have decided that we would like Hattie to be in the hearing world.  There are different opinions on what is best for a child (listening/verbal route or sign language).  I have learned, in the short time that we have been immersed in this new world, that you have to make the decision that is best for your family.  Because we do not have anyone else in our family who is deaf we want Hattie to benefit from hearing and speaking like all of us.

We are blessed to be living in a world where technology is ever changing and improving.  An option that we have for Hattie is the placement of cochlear implants. This is an internal and external device that she would wear that will actually allow her to hear and speak.  Before we get that, however, we will do a trial run with hearing aids to determine if there is, in fact, any hearing with them.

Hattie has profound hearing loss, which means that she has virtually no hearing at all.  Because of this we do not expect that she will have sufficient hearing with her aids.  However, we will still have her wear them every waking hour to stimulate any functioning part of her auditory nerve.  If appropriate, at about 6 months of age she will get a CT scan to ensure that the anatomy of her inner ear developed properly so the cochlear implant can be placed.

The FDA has approved implantation at the age of 12 months.  Right now doctors are trying to show the benefits of implanting a child earlier to help with speech and language development.  It depends on the ENT physician, but a lot of children are able to get implanted at 9-10 months old.  Children that are implanted early usually can have normal speech, but require early and intense speech and developmental therapy.  We are very hopeful that this can be the case for Hattie!  Until then we just take one day at a time and enjoy being her parents.

Some people have asked us if you can tell that she is deaf.  Right now, besides not being startled by loud noises, the answer is no.  She babbles and squeals like hearing babies and has been smiling at Mommy and Daddy more and more.  We are told her babbling will most likely stop around 9 months because she won't get "rewarded" by hearing herself.  Because of this, we try to reward her now by being very animated when she talks or smiles so she'll continue to practice.  She is so much fun and our hearts fill with love more each day!

Smiling at Daddy

Thursday, March 8, 2012

Hattie Rose

On December 28, 2011 we were blessed with our beautiful daughter, Hattie Rose.  We had been praying for her long before I ever found out I was pregnant.

A few months before we got pregnant for Hattie I had suffered a miscarriage at 12 weeks.  We were devastated!  I never truly understood the impact of a miscarriage until it happened to us.  Unfortuantely, I think that is how most things are; they have to happen to us to fully appreciate the feelings that are associated with it.  Kevin and I learned what it really meant to give our sadness and worries to God.  He was the only one who could completely comfort us during our grief.

Two months after the miscarriage we were very blessed to get pregnant again.  We were very excited to find out we were having a girl, as there is a long line of boys on my husband's side.  As my sister-in-law, Megan, exclaimed, "There's hope"!  :)  Now don't get me wrong, we will be thrilled, and hope to add a boy to our famiy some day, but we were ecstatic to start our family with a little girl!

I had a very normal, healthy pregnancy and truly enjoyed being pregnant.  My delivery went smoothly (after my epidural, of course) :)  and at 10:01am we met Hattie for the first time.


Like most of you know, hospitals screen babies' hearing when they are first born.  Hattie had her first test 6 hours after she was born.  When the nurse brought her back we were informed she had failed.  The nurse assured us that this was very normal and was most likely failed because of fluid from delivery that had not dried up yet.  They were going to test her again in 24 hours.  So, the next night the nurse took her to have the test repeated.  Once again, when they returned, we were told that she failed.  The nurse said again, probably still fluid.  The next step was to wait a couple weeks and have another hearing test done at an audiologist's office using better equipment.

At exactly 2 weeks old we had the test done.  The way they test newborns is by placing electrodes around their head to evaluate the brain's response to different sounds and pitches.  Normal conversation is heard at 0-25 decibels.  They started testing her at 50dB.  She did not respond.  The Audiologist proceeded to increase the sound by 10dB until she reached 90dB, which is where their equipment stopped.  Hattie's right ear never responded and her left ear finally responded at 90dB.  That day she was diagnosed with profound hearing loss.  Needless to say, we were stunned!  We do not have a history of congenital hearing loss in our family and, as I stated before, I had a very healthy pregnancy.

Being deaf is not a prison sentence, but has been very devastating to us.  When you dream of your future children and family, rarely do you think of anything other than everyone being healthy.  I have learned that it is important to allow yourself to grieve, even the dirty feelings that come with this.  I am not going to pretend that I am someone who does not ask God "why" during certain times.  He is a big God and I believe that He can handle our questions.  The grieving process is exactly that, a process and it comes and goes.  These past 2 1/2 months have been difficult.  I did not expect to spend my maternity leave going to different doctor's appointments and therapies every week.  However, this is our reality now and we wouldn't change it for anything.  We do not know or always understand God's plan, but we know that we are to trust Him because He is sovereign and knows what is best for us.  We are blessed that we were given the privilege of being Hattie's parents and entrusted with her care.  We will do anything we can to ensure she is getting the best possible care!  A verse that has encouraged me through the miscarriage and now this, is from Romans 15:13, "May the God of hope fill you with all joy and peace as you trust Him, so that you may overflow with hope by the power of the Holy Spirit."

There is hope in all of this!  Promising treatment is available for Hattie.  I will explain all of that in my next post.  Today we have an appointment with the Audiologist to get ear molds made for Hattie's hearing aid trial run.  We continue to pray for healing and that God will reveal to us His purpose in this.  We are so blessed by the love and encouragement given to us by our family and friends.  Thank you all!