Monday, March 26, 2012

Hannah's Hearing Birthday

Hannah's cochlear ear implant was "activated" or "turned on" March 22, just three weeks and a day after her surgery. The day marks Hannah's hearing birthday because this is the day Hannah heard sounds for the first time and the way she will be hearing for the rest of her life. The sounds are brand new to her and whatever sound she did hear with her hearing aids, the sound with the cochlear device is different.

To mark the occasion, Max Gomez from CBS News documented the joyous occasion for a news segment. Of course, the mother with a journalism background and a father who works in public relations brings a news crew with her. I wish we took a picture of Hannah with Max, she was such a charmer.

The activation went extremely well and her audiologist Megan said Hannah's responses were the best we could have hoped for or were "ideal". We were told Hannah might display one of three response: she could either be happy, frightened by the new sounds or nothing. The goal of the day was for Hannah to simply wear the device and be comfortable. We were so pleased that Hannah's responded much like she did with the hearing aids, she happily turned when she heard noise. This time though the noise wasn't blaring, forcing Michael and I to take cover. Rather it was somewhat normal everyday environment noises that piqued Hannah's interest.

Megan placed the headpiece with the microphone on Hannah's right ear. Megan initially had Hannah listen to a series of beeping sounds generated by her computer that linked directly to Hannah's device. Megan's goal's here was to have Hannah visually acknowledge the sound by looking at a cute panda in a box that began to drum. This showed that Hannah heard the sound, and that she knew the drummer would begin to drum and she would be excited to see it.

video

After the beeps, Megan worked with Hannah on hearing the ling sounds, the six sounds that represent various different speech sounds from low to high frequency. It is typical for a child who is hard of hearing not to hear the higher pitched sounds such as sshhhh, ssss, zzzzz. Hannah didn't hear these higher sounds at all with her hearing aids, but one of the benefits of the cochlear implants is to provide Hannah with the entire range of sound.

video


Hannah's new hearing devices were set very low and will gradually build to its threshold over the next couple of months. It's set so low because these sounds are all new to Hannah and we don't want her to be afraid of them or not like them. So far, her most definitive response was to loud sounds. They told us she might continued to be quiet at first, as Hannah is listening to herself and the new sounds around her.
The device has three programs that we gradually increase.  We started at program one and by the end of the week we moved to program three. We head back to see Megan for the next set of programs that build upon what we did today to give Hannah more volume. Hannah's left ear will be activated on April 20. Stay tuned.


Sam checking out Hannah's new right ear accessories. We get the box for the left ear on April 20.

Hannah's been amazing throughout this whole process. She's kept up her happy, sweet demeanor. When she came home from the long day at NYEE, her big brother greeted her and instead of her usual and loud excited cackle, she waved to him and said him a little hhhaaaa, almost like a deep Southern hiiii y'all.


Hannah wearing her new Neptune device in a pretty blush pink.

We spent the next day enjoying a little picnic in the park, enjoying the warm Spring afternoon with our friends Emilie and her daughter Olive. Olive is only a day older than Hannah and was activated on February 29, the same day as Hannah's surgery. They make for great little friends, sharing toys and learning from one another.


Hannah and Olive in Central Park. The object of their affection, a pacifier strap.

We've been busy helping Hannah detect sounds, getting her back into her routines and introduce the sounds to her. I've taken to singing to her the baby lullabies she missed as a newborn to help her get used to my voice and Daddy has been playing his guitar while Hannah shakes her maracas. So far, Hannah's been enjoying listening to the new sounds and has become even more animated. Life is great!

Don't forget! Share in Hannah's hearing journey by tuning into the CBS 5 pm newscast on Monday, April 2. It is slated to run at about 5:45 pm.

Wednesday, March 21, 2012

Spring Sounds

Dear Hannah,

We hope you are busy and happy with Sam, your toys, your schedule of therapy and wonderful walks in the park. March 22nd is almost here - but not nearly fast enough. We think of all the things special to that day – like it’s the beginning of Spring – there will be a New Moon on that day - and best of all it is the day you will have the wonderful joy of sound again. Remember that we love you and our prayers are always with you (That goes for your mommy & daddy too. Hannah, you have terrific parents.)

We cannot be with you tomorrow, but we will ask your mommy & daddy to give you an extra big hug and kiss for us. March 22nd – What a Wonderful Day!

Love & Kisses

Mom Mom & Pop Pop


Tuesday, March 13, 2012

Birthday Bliss

Yesterday was Jen's birthday, but it was also the most glorious day of the year, weather-wise, just as it was on the day Jen was born,
First we went to Alice's Teacup where we celebrated with a wonderful Mat Hatter lunch. Hannah was doing her thing, making friends with the wait staff and all the diners. She waved, cleared her throat for attention, and gave the Bronx Cheer for everyone to notice her and they did. She also did her endearing head move from side to side, almost saying "Look at me! I'm so adorable". The couple at the next table were trying to have a romantic lunch, but they couldn't resist Hannah's charms. Move over Mayor Mike, we now have Mayor Hannah on the horizon.
Next we went to the Central Park Zoo to visit Hannah's new friends, the penguins. Jen stood Hannah up against the glass so she could watch the swimming and cavorting of these fascinating creatures. At times she would try to touch the penguins through the glass. Hannah is a real animal lover, just like her parents. Next it was on to Gus, the Central Park Polar Bear. Gus is enormous and Hannah watched him swim back and forth. I think she thought the penguins were a little bit more manageable for her to watch.
After this, we went to Sprout, Hannah's favorite store. She bought some new dresses for the Spring. I think she liked them all. Next door to Sprout is a wonderful yogurt place. Hannah tasted some banana yogurt which must have felt great on her teething gums.
I had a great day with my two girls. I'm so proud of Jen and the woman she's become. She's faces all the challenges in her life with strength and dignity. Hannah couldn't be in better hands. I hope she grows up to be the strong woman that her Mom is.
Happy Birthday Jen. I love you!

Thursday, March 8, 2012

A Touch of Summer

Yesterday was a busy day in the life of young Miss Hannah Rose. We had a speech therapy appointment with Liz in the morning. Hannah was a wee bit more vocal. When she put a soft baseball in her mouth she made a bw-bw-bw sound. She is really trying to say she can't wait to see her first Yankee game this summer. She also made two requests, saying the uhh (up) when toys were dropped. After the session with Liz, Hannah and I picked out the pretty colors for her Neptune device. The Neptunes come with A LOT of equipment so we got to pick out lots of fun colors she can wear both everyday and in the water. I'm so excited that I'm looking into signing her up for swim lessons. Later on, we saw Dr. Alexiades for Hannah's post-op check-up and she's looking great. Although she slept through it, Dr. Alexiades said her swelling is gone and the incisions look great. He said we should follow-up with him a week after her activation.

Finally it was time to enjoy the 70 degree afternoon. Hannah was a trooper all morning so we headed to the park. She went on the swings and she was all smiles, enjoying the warm sun on her face and the wind in her hair.
Jacket off. It's 70 degrees and the swings are just fine.

It reminded me of all the sounds Hannah will be hearing this summer.

*The crack of the bat at Yankee Stadium
*The ice cream truck
*Water splashing
*Waves crashing
*Salsa music
*Children screaming as they get out of school
*Birds chirping
*Bees buzzing
*Summer Stage concerts
*Fireworks booming
*Marching bands
*Her friends and family singing Happy Birthday

Wednesday, March 7, 2012

A Quiet House

It's hard to believe, but today is one week since Hannah's surgery. While we are pleased with how she is physically, it's shocking how quiet she has become and it makes me feel really sad. With the hearing aids, Hannah was considerably chatty and sometimes it was even difficult to get a word in with her. She could hold a conversation, babble along with her hearing peers and even impressed her pediatrician with her array of sounds. Now with Hannah being so quiet, it was hard for me to find my voice with her and have been speaking to her gently, in a whisper.

In a way, it is a good thing Hannah is more quiet. Her speech therapist Jessica explained that Hannah may have enjoyed hearing her own voice, as well as her Mommy's, that caused her to be so chatty. She said that without hearing her voice, Hannah mane be just adjusting to her new environment. The good news is this is temporary and in two weeks, Hannah will again be able to hear her sweet voice and get back to talking up a storm.

In the meantime, Jessica said Hannah is right now just relying on visuals much more and soaking up as much as she can through this. She suggested that in the meantime Hannah needs to be consistent in her activities. She explained that even though she cannot hear what we're saying, she can see that we are vocalizing and engaging her. This is important and will help her though this transition time. So during our therapy session Jessica brought out some of Hannah's favorite toys, like the Little People farm set, a caterpillar shape sorter and spinning school bus. She also said it is important for Hannah to see us speaking the words and to let her feel someone talking, especially the lower sounding vowels and consonants like ahhh, baaa, daaa, mmmm, by holding her hand to one's throat.

Liz was on the same page and even had a special voice-activated vibrotactile device that worked by stimulating Hannah when the person spoke into a connected microphone. This way Hannah can not only see when someone is talking but can also feel it. So while Hannah is extremely quiet without sound, her visual cues are more keenly aware of her surroundings. When Liz played pat-a-cake with Hannah, she would clap her hands to indicate she wanted Liz to continue.

I am so thankful Hannah's services will continue during these three weeks. Jessica and Liz helped me find my voice again with Hannah. Hannah is quiet, but she still is our happy little girl. We are so lucky to have her.






Monday, March 5, 2012

Hannahlicious

Hannah's recovery has been astounding. She managed to sleep through the night, waking up only to eat. We were warned Hannah might get quiet without any access to sound. It made the decision to implant both ears at once more difficult, but at such an incredibly young age, we decided one surgery was best. By Thursday morning, Hannah made her first sound, which was her usual loud giggle when she saw Sam. This was of course music to our ears. By noon, the day following surgery, we took off Hannah's bandages and she got busy playing with her toys, getting back into her groove. We were giddy. We holed up in our apartment, read a lot of books and played with all her favorite toys. Even though Hannah can't hear, she is heavily relying on her visuals more than ever and soaking up everything she can. Every hour we saw noticeable improvement with Hannah returning to her old smiley, playful self -- just quieter.

On Friday, Michael was back to work, so my mom came to make a special visit and the two of them had a grand old time. They sang, read stories, waved, clapped and laughed like best of friends. If laughter is the best medicine, then Hannah will back in action in no time. Grandma also brought Hannah a special lamb puppet from the Central Park Zoo, which brought a huge smile to Hannah (and Grandma).

Grandma reading Hannah a story about giraffes. It must be a funny one.

Saturday marked Hannah's first foray into the city since the surgery. It was one of those warmish winter afternoons we've come to enjoy so much this season. We decided to head west through Central Park, a.k.a. Hannah's backyard. When we got back, Hannah's first friend Parker dropped by the apartment. It's so cute to see them play together. They enjoyed playing with a musical turtle that Parker brought for Hannah. Parker also brought Hannah an awesome tank top from her favorite store (I mean mine) Sprout that I can't wait for her to wear.

First Friends Parker and Hannah



Sunday brought Hannah's very special Aunt Kathy and Uncle Fred to visit and Hannah dazzled them with her beautiful smile. They brought Hannah as special "Tickle Monkey" that shakes its hands in fits of laughter when you tickle its belly. This of course made Hannah laugh so we tickled the monkey just to hear Hannah laugh some more.


Hannah figuring out how to make her new monkey giggle.

All-in-all, we couldn't be more please with Hannah's surgery. Dr. Alexiades and the entire staff at NYEE were amazing and her recovery was luckily and amazingly very fast. It's hard to believe it's over and we start with our therapy sessions again this week.

Thursday, March 1, 2012

A Leap Into Hearing...Surgery Day

We checked into New York Eye and Ear Infirmary at 6 am. As I walked through the doors, visions of the past 9 months raced through my mind -- the morning she failed her newborn hearing test, the day we got her diagnosis, doctors visits, hearing tests, therapy sessions, everyone saying "once she gets her implants". I thought my legs were made of cement and it was tough to push Hannah in her stroller through the hospital's lobby. A fierce desire to just hold and protect her overcame me and the tears started to flow. Everything Michael and I have done for Hannah and her hearing was heading to this day and it was FINALLY here. Were these tears of joy that this was the first major step in Hannah's hearing journey or total fear for Hannah's five-hour surgery later that morning.

We took the long elevator up the the waiting room on the ninth floor. It was pleasant enough. Plenty of toys, colorful murals on the walls. Nurses came to take her vitals, asking us when the last time she ate - she had milk at 11:30 and some water at 4:30, what, if any, medicine she was taking, any allergies we knew about. They tried to take her weight and height, but since she was still sound asleep in her stroller, I asked if they could use the number's from Hannah most recent doctor's appointment which was just 5 days prior. They obliged. Next they handed me her hospital-issued pajamas and scrubs for me.

Me, Hannah and Michael just before surgery

Our next visitor was the anesthesiologist who asked about our family history to anesthesia and gave us the low down on what Hannah would be given and how she might react.


Finally Hannah and I were escorted down to the second floor to the OR. We were placed in a holding area with a little boy about 4 and his mom. I was holding onto Hannah for dear life when I looked down and saw the little boy holding Hannah's hand. Here were these two babies, both in their Bugs Bunny pajamas, awaiting surgery, comforting each other. I was so happy they were there.


The walk to the OR was the longest steps I've ever taken. I saw Dr. Alexiades right away and I knew she was in the best of hands. The team confirmed they were operating on both ears. At this point Hannah was, of course, fussy and lost a sock. Dr. Alexiades picked up the sock and made gentle cooing sounds to Hannah to help calm her. It worked on her mom too. It's one thing to be so good medically at what you do, but to also have the human element behind it is almost as important. He said he would be done around 12:30 and we should go out for breakfast. They had me place Hannah on the operating table and they quickly put a mask on her and in about 30 seconds she was fast asleep. I heard someone calling out orders and I wanted to get out as fast as I could. I never felt more alone. Someone came up to me at the door and asked if I knew where I was going. I took the elevator back up to the 9th floor and found Michael in the waiting room.


My parents joined us later on and helped us pass the time. At 12:30, as promised, Dr. Alexiades, met us in the waiting room with a huge smile on his face. He said the surgery was successful and Hannah did very well. He said she was going to the recovery room and we could join her shortly. Such a relief.


Michael and I went to the recovery room and saw her peacefully sleeping. I was expecting to see her swollen and attached to the different tubes, but it's not as easy thing when it's your child. After about 1.5 hours they wheeled her up to the main recovery room where she continued to sleep. They woke her around 4 pm to gauge her reactions and she got a little fussy, drank some glucose water and we were sent home.

Post-surgery

Daddy's shoulder is a good place to recover

She spent the rest of the night sleeping on Michael and I, waking up every couple of hours to eat. Although she was a little groggy, Sam and her favorite stuffed animal Murray were able to get a little smile. At about 1 am she woke up and was a bit more perky.

Hannah's home and feeling a bit better than yesterday but looks like she had a few rounds in the ring.

Bandages off

It's now about noon and the bandages came off. There is a small scar, about 2 inches around each ear and her hair is shaved. I'm so pleased with everything. She's back to being Happy Hannah, crawling, climbing, playing with all her toys. She's a little more quiet, which is a bit strange for me, but she's still using her little voice and gives Sam a smile whenever he comes into the room.

The next major step is when the devices get turned on and Hannah will be hearing for the first time. This will happen in about three weeks when her audiologist Megan will "activate" her on only one side with the Advanced Bionics Neptune device. The other side will have to wait a couple of weeks to allow Hannah and us some time to get used to the devices and a new way of hearing.

Leap Year is a special day as it only happens once every four years. This year is even more special as it is a day we will never forget.