Saturday, January 28, 2012

Love, Madison

A big THANK YOU to all of my family and friends for your kind gestures as I recover from my procedure.  I was so happy to be greeted by so many people during my stay in the hospital.  I am one lucky girl to have so many wonderful people in my life!

Out of my three best friends, two came to see me shortly after my surgery.  Gloria, who many of you know is my nanny, she is also my best friend.  I was so happy to have her care for me and hold me while I was in discomfort after the procedure.

Jessica, my speech therapist at the center, is another one of my best friends.  I was about to take a snooze and in walked Jessica!  I was in so much pain so it was difficult to greet her with a smile.  I look forward to seeing her next week, as I will be ready to go back to speech therapy classes.

My bandages were removed the morning after the procedure.  I was such a good girl and didn't even fuss.

An hour later, we were discharged from the hospital.  I was finally able to go home to see my other best friend, who happens to be my dog, Alan.  He wasn't allowed to visit me at the hospital so I didn't see him until I got home.  I was so happy to pet him and he attacked me with many kisses.

Many of you ask how I am doing? I have been sleeping better each night... and I am pretty much back to my regular schedule during the day.  I have to take yucky antibiotics for the next week - but aside from that, I am just fine! I have a busy month coming up in February.  My "new ears" will be turned on Thursday, February 9th.  I am so excited and can't wait to hear my mommy and daddy's voices for the first time.  My follow up appointment with Dr. Roland is the next day - he will take a look at my incisions and make sure everything is healing properly.  So the count-down finally begins... 12 more days to go until my journey to hearing begins! Stay tuned.... 

Love, Madison

Wednesday, January 25, 2012

No Balloons Allowed In The Recovery Room

Madison needed to check-in at NYU at 6:30am, meaning her last feeding could be at 4:30am  (4 hours prior to her scheduled surgery time).  After feeding her, we went back to sleep and then finished packing before loading her into the car for the quick trip to the hospital. 

We checked in and were visited by several nurses – taking measurements, vitals, etc.  We then met with the pediatric anesthesiologist who went over what she would be given, how she may react, and what to expect…and answering all of our questions along the way.  They even gave Madison “baby valium” to ensure she would have no short-term memory of what would be happening.

We also met with a nurse from Dr. Roland’s staff who would be present in the OR and once again assured us that everything would be okay.  Then, about 15 minutes before her surgery, Dr. Roland met with us.  We discussed the procedure and Jennifer was given scrubs to put on and would carry Madison into the OR.

Walking down the hallway into the OR holding my baby girl – tears quickly filled my eyes.  I knew that Madison was in good hands and trusted every single person in that room.  Madison was in good spirits as I laid her down on the table.  After attaching stickers to measure her vitals, the anesthesiologist gently applied the gas mask.  Within 30 seconds, Madison was sound asleep.  I was escorted out of the room and joined Brian in the waiting area.  This was going to be the longest few hours of my life….

Brian and I received numerous emails, text messages and phone calls from family and friends both near and far over the past few days… Once again, we are reminded how lucky we are to have such caring family and friends in our lives.  The words of reassurance are exactly what we needed.  Things were going to be okay – the procedure would go fine – Madison will do great.  We were joined by a close friend and family member while Madison was in surgery.  It was great to be able to try and pass the time while our little angel was in the OR. 

About 30 minutes into the surgery a nurse comes out into the waiting room and says, “Madison Kramer.”  We stand up….”There are no balloons allowed in the recovery room.  You’ll need to get rid of that before you leave the floor.”  Of all things to be told while your child is in surgery…

50 minutes into the procedure we see Bill Shapiro – the chief audiologist at NYU.  He told us that they are now on ear #2 and everything is going great.

Two hours and fifteen minutes after the start of her surgery, a nurse comes out and asks us if we’ve spoken with Dr. Roland.  We say, “Well we did this morning before Madison’s surgery.”  She tells us the surgery has ended…out walks Dr. Roland.

“Everything went well.  She’s doing great!”  He then proceeded to give us some more details and next steps.

 Madison was then transferred to the recovery room (with no balloon).  Seeing her in bandages for the first time was difficult, but it was even more difficult seeing her in pain.  The nurses gave her tiny doses of morphine to try and help.  Another side effect of the surgery is the swelling.  Seeing her cheeks and face so swollen is difficult.  Dr. Roland prepared us for this, as well as other side effects – but it still stings. 

Around 1pm we were transferred to the pediatric wing.  We would spend the next 18 hours in this room.  Friends and family stopped by throughout the day.  Madison was still in pain, but the painkiller was switched from morphine to Tylenol.  She started eating more, and soon the IV was removed.  Swelling dissipated a little, and after a few hours she started ‘chatting’ again, but no smiles until we showed her a picture of her best friend…her brother – Alan, the chocolate lab.

Madison has been sleeping on and off the past few hours (it is just about past 10pm as I type this entry) – we are hoping that she rests peacefully through the night… and hope that we can catch some rest as well.  We were told to expect a visit tomorrow morning around 7am by Dr Roland and his team.   The bandages will be removed and we will be given instructions on the do’s & don’t over the next few days until our follow up appointment in February.  We all look forward to returning to the apartment tomorrow morning and relaxing this coming weekend.

Insurance Denied!

Brian and I got notified at 3:30pm on Monday afternoon that our insurance provider was denying Madison’s procedure. 

“It’s considered an experimental and unproven procedure.  Current medical studies have not shown that this treatment is safe and effective in children less than 12 months of age, therefore your health plan will not cover the requested service.”

One could imagine the emotions that began to flow throughout…we had been planning for this day since August, and to get notified this late in the game was heartbreaking.  We did our due diligence and found the best surgeon, who is at the forefront of CI surgery, and has even published studies showing the safety and effectiveness of CI surgery for infants this young.

A peer-to-peer (insurance company’s MD speaking with our surgeon) conversation needed to take place prior to 3pm on Tuesday or else the surgery would be canceled.  We tried all avenues, spoke to several people, and tried our best to cut through the bureaucracy at the insurance company.  At 2:30pm on Tuesday, we were cc’d on an email from our surgeon stating, “The surgery has been approved.  Please finalize Madison’s scheduling ASAP!”

Friday, January 20, 2012

January 19, 2012 - Pre-Surgical Testing at NYU

On Thursday, January 19th we had Madison's pre-surgical testing at NYU.  We started out the day with a tour of the pediatric floor.  We viewed a room that Madison will sleep in - but instead of a hospital bed, they'll be placing her in a transportable crib with steel bars.  Having never seen anything like this before, emotions definitely started to kick in.  It was difficult to ask many questions because we were concentrating on holding back tears. There will be a chair in the room next to her (which folds out into a bed) so 1 parent can sleepover.  We're hoping to get a room by ourselves, to get more chairs so that mommy and daddy can be by Madison's side.   However, there is a strong possibility we'll need to share a room with another patient/family.  An interesting note is that they try to place patients together by age or surgery type, but it's theoretically possible for Madison to share a room with a teenager.  After surgery, Madison will probably first go to a recovery room, before getting situated in her overnight room.  The recovery room has more nurse coverage and is a more optimal setting for her to awake from the anesthesia. We also viewed the cafe and the lounge, but we don't plan on leaving her side once she gets out of surgery.

After the tour, we headed to another floor for testing/meetings.  First, we met with a nurse that works closely with Dr. Roland (the surgeon).  She gave us a high overview of the surgery, timelines, etc.  She told us that we will receive a phone call on Tuesday night confirming everything, as well as providing us the exact start time of the surgery.  Because she's the youngest patient of the day, Madison will most likely be scheduled for the first case Wednesday morning, which will be 8:30am.

Next up, we met some more nurses.  These nurses took her height, weight and head circumference.  In addition, they needed to get a urine sample.  Luckily, I placed cotton balls in her diaper after her last feed and the nurses were able to squeeze the cotton balls and get enough of a sample.  (She actually peed right after this, all over the table/chair, but I didn't care much, as I did check the box "Can't Control Bowel Movements" on her paperwork..ha)  Finally, they drew blood out of her heel, and besides a quick yelp - all was okay.

The last meeting was with the anesthesiologist.  We went over what they will be doing to her - gas/anesthesia/breathing tube.  And then we discussed her feeding schedule for the days and hours up to her surgery.  She won't be able to have any breast milk 4 hours prior to her arrival time, but is allowed juice/water 2 hours prior.  Considering she has never had juice or water before, not sure how much this will help.  Maybe we will to a test run this weekend.

Everyone we met with was extremely nice.  Plus, everyone commented how cute Madison was... which is always a nice compliment :)  We continue to hope and pray that our adorable girl comes through like a champion.  After many months of waiting for this day to finally come, we can not believe that it is less than a week away.  Moments of excitement and anxiety are floating through our minds... looking forward to accomplishing yet another important milestone to bring sounds to our baby Madison.

January 8, 2012 - 7 months old

That's right - I'm 7 months old here! My Daddy dressed me for this picture and made sure I was sporting my Giants cheerleader gear for the big game that day.  I squeezed into this shirt again the following Sunday.  Although I'm sure it won't fit me this Sunday, Daddy will probably have me wear it a third time.  He says it will bring them good luck with a Giants victory.  We shall see!!

Tuesday, January 3, 2012

December 2011 - "We Are Ready For You 2012!"

At this time of year, we all try and stop for a moment and take a look
back at what we have accomplished over the past year, as well as what's 
in our vision for the coming year.  It is hard to believe that a year ago 
I was just about 5 months pregnant... My husband and I were busy
trying to prepare everything for lil K's BIG debut into the world....
Interviewing doulas, registering for baby items, choosing baby names,
taking infant CPR courses and going to many sonogram appointments...

Little Miss Madison made her entrance into the world on June 8th.  It
was the most joyful day of our lives!  Little did we know that it
would soon be followed by a day we never want to visit again. 

This past year sure has been an emotional rollercoaster.  Our friends,
family, and those we have met along the way, have truly served as the
foundation for our much needed emotional support.  We are so thankful 
to have so many wonderful people in our lives who care so dearly for 
Madison.  Each morning we wake up to a healthy, sweet little girl laying 
in her crib with a huge smile on her face - holding paci's in both of her 
hands... Moments as simple as this make us feel so happy. We are 
looking forward to what this year has in store for our family.  It will be an
exciting year watching Madison grow as she reaches many milestones.  
We are ready for you 2012!  Stay tuned...

December 2011 - "Eating the Wrapping Paper"

December was filled with a lot of fun surprises!

St. Nicholas Day - My parents told me all about St. Nicolas Day and 
they taught me about this special tradition.  I left my booties out under
my crib on December 6th and woke up the following morning to a cute
little book.  I guess I have been a good little girl this year!

Hannukah - 8 days of presents? Wow! I enjoyed lighting (really should
say EATING) the candles to my wooden menorah every night.  Does it
get any better than this?

Christmas - Spent the weekend out on Long Island with Grandma and
Grandpa Ellis.  I enjoyed watching the trains around the Christmas
tree.  On Christmas morning we opened a whole bunch of presents.  I
enjoyed eating the wrapping paper.  I ate from a high chair for the
very first time and discovered my favorite food, carrots.  I requested
to try a Christmas cookie but was told they can't be pureed.  Guess
I'll have to wait until I'm a bit older.

Vacation - I had my first family vacation with Mommy and Daddy.  We
left right after Christmas and headed down to Florida for the week.  I
survived the plane ride, it wasn't too bad.  I got to visit many
family members, a few for the first time.  First stop was to meet
Great-Nana Ellis and Great-Uncle Ellis.  Than I headed over to stay
with Grandpa and Grandma Kramer.  I got to visit my Great-Aunt & Uncle
Ellis and 3 Great-Cousins along the way, along with a cat!  I also got to 
meet my Great-Nana Kramer and Great-GiGi Kramer.  From the pictures below, 
I'm sure you can see that I had such a great time.

Monday, January 2, 2012

December 2011 - "Wednesday, January 25th"

12/22/2011.  This date has been marked on our calendar for almost 4 months. It represents the culmination of months and months of testing.  After numerous audiology, therapy and specialist appointments –we were finally able to meet Dr. Roland – arguably, the most distinguished surgeon in the field.

Note: We actually met Dr. Roland at a Cochlear seminar that Brian and I attended in Westchester during the month of November.  We were able to ask the doctor several questions, but there was one comment that stuck out the most.  “When I meet with you in December, we’ll hopefully be able to schedule a surgery.”

Dr. Roland went over her results and said that she’s officially a candidate for a cochlear implant.  He discussed the results from the sound booths, the CT scan, as well as her genetics results.  In fact, when going over Madison’s CT scan, her entire ear structure was “beautiful.”  Hair is not visible on a CT scan, so her blood/genetics test is the only way for the doctor to know her exact cause.

After doing our research and due diligence, Brian and I have decided for Madison to be implanted with bilateral cochlear implants - simultaneously with Advanced Bionics.   There are three CI systems currently on the market.  With the extensive research Brian and I have done, we feel this system is the best choice for our daugter.  Since Madison’s hearing loss is a result of a Connexin mutation - there is no structural damage – Dr. Roland will have no surprises and Madison will hopefully only be under anesthesia for a few hours.  The first few years of Madison’s life are vital towards the building of speech and language.  After speaking with several professionals, we firmly believe in the saying that “two is better than one.”  In fact, most children are now being implanted with 2 devices – many sequentially and some simultaneously.   Brian and I are happy that Madison’s “ears” will develop at the same pace and she will not favor one side over the other.  

Madison will now be able to hear in both ears by the age of 8 months – something that seemed unimaginable only a few months ago.  Her surgery is scheduled for Wednesday, January 25th at 7:30am.  Although it is an “outpatient” procedure, Madison will be spending the night (as will Mommy and Daddy) with the hopes she will be discharged to go home Thursday morning.  Madison has pre-surgical testing will be taking place on Thursday, January 19, where we will receive more information about the actual day of the procedure.  Madison won’t be able to hear right away.  There is a 2-week “waiting period” until the implants are actually turned on.  The swelling needs to go down and Madison will need to recover.  We haven’t received the date just yet for her activation – but this day will be a VERY memorable day, as it will mark the first day that Madison will be able to hear sound.

There is still a long journey ahead, with hours and hours of appointments and years of therapy, but this is another step – a very big step - on our journey to bring sound to Madison.

December 2011 - "4 Days A Week"

Brian and I requested to increase the frequency of Madison’s therapy at The Center to 4 days a week (Monday – Thursday).  We were so grateful when we received the approval!  By doing this, we will be ramping down Madison’s Early Intervention services at Clarke to just one day a week (Fridays only – Group session + speech session Lauren).  Overall, this change will provide Madison with more therapy time because the sessions at The Center are 1 hour each, whereas at Clarke they were 30min. Plus, The Center is located only a few blocks away from our apartment… allowing for an easier commute with the little lady’s very busy schedule. These changes will be going into effect in January of 2012.

Madison has been going to The Center since August.  Translation:  She has been receiving therapy since she was 2.5 months old!  Brian and I believe that the services offered through The Center have been great to our daughter.  She began her services with Lois (Director at The Center) over the summer, and when the “school year” started, Madison began working with Jessica twice a week.  Now, she’ll be seeing Jessica 4 days a week.  As you’ll see from the video, Madison truly enjoys her time at The Center.