We go up, And we go down...

Chloe Jean - 8 1/2 Months

May 22, 2012 - The big day was finally here!!  Since Chloe had that other ear infection and fluid in her ear the week before - she also received tubes in both ears the same day.  Chloe was scheduled for surgery first thing in the morning - and was one of the best patients, if you ask me.  She didn't fuss about not getting to eat right when she woke up - she was too busy studying everything around her - all the new faces that came into the room and all the new toys they had in a nice playroom there.

The surgery for the tubes went very well - we got a report from the Doctor what seemed like only minutes after she left.  However, we waited for what seemed like forever, to hear from anyone regarding how the MRI went.  After an hour, I was one nervous Mommy (and I am sure Daddy was too) and was ready to have Chloe back with me, in my arms again.
Shortly after, the Doctor walked in and told us she was in recovery and...wait for it...

Chloe Jean - recovering

God answered our prayers (and yours too) and we got the positive results we prayed for:  everything looked good - hearing nerve is present, the cochlear (middle ear) and vestibular (balance) system are normal!  

There were many tears of joy from both of us - we are so thankful for everyone's thoughts, prayers and concerns.  I couldn't stop smiling, I couldn't stop crying - We both are ready to begin the next journey with Chloe with the Cochlear Implants...

AND THEN we got a phone call we weren't expecting...Doctor called to report that they found a cyst near Chloe's brain stem.  The unexpected news hit us pretty hard - we weren't expecting this hurdle and thought we were in the home stretch for scheduling surgery.  We had an appointment with the Neurosurgeon on Tuesday (yes, today).

It was one long weekend filled with lots of rides on the emotional roller coaster of our journey.  We didn't quite know what to expect today: worried that this would put us on hold for the CI surgery.

With lots of prayers over the weekend - We met with the Neurosurgeon from Children's Hospital this morning.  Chloe has an arachnoid cyst - and we were told this is nothing for us to worry about.  This type of cyst normally only grows during infancy and if needed, can be taken care of if it causes any harm.  The cyst will be monitored, thankfully by CT Scan and not through MRI (once Chloe has the CIs, she will not be able to have a MRI, even of her big toe, due to the magnets), for the next year.

And now I remind myself to have patience...and let the Cochlear Implant Team work their magic...so our next phone call will carry the news of a surgery date!!

Sisterly Love Always

Just another bump in the Journey

Chloe has yet another ear infection - which the Doctor isn't really thrilled about, neither are her parents.  There can not be any fluid in her ear(s) at time of surgery (if we get there, fingers crossed, prayers said).  So another round of antibiotics and wait until the middle of May to see if she will need tubes or not.

Chloe Jean - 8 months

On another note, the MRI has been scheduled for May 22, 2012 - and if needed, this will be the same time she will have surgery for tubes.  I am excited and yet very nervous for the MRI - she is just so little to be put under, but it is the final piece of the puzzle we have been praying for.  The MRI will confirm whether or not the hearing nerve is present. 

Until then...say a little prayer for a positive MRI report

Where we are today (April 2012)

We are beginning to get connected with other families with children who are deaf or hard of hearing. We have attended an amazing workshop that brought tears to my eyes seeing the preschooler with the cochlear implants - pure joy

The family is learning sign language to help with communicating with Chloe.  The truth is Sydney is far better at it then the parents.  She absorbs the signs like a spounge.  The family makes a game to see who can "out sign" each other. 

We decided to have genetic testing done - just to see if our "Why" question could be answred and also to assist with the cochlear implant process. God answered our prayers again and provided us with an answer. The day we got the results was big, a huge weight was lifted off our shoulders. Chloe's hearing loss is due to a gene mutation (GJB2) and the most common of GJB2- which means both parents are carriers. As parents, we have a one in four chance of having a child with hearing loss. 

We are awaiting to hear the "green light go" (as I like to call it) to see if Chloe is a candidate for Cochlear Implants.  We have been through all the necessary appointments as part of the process... a MRI will be needed prior to surgery to verify nerve is present and will be used as a map (if implanted). In the meantime, we have to make a decision on which "brand" of device we want her implanted with. 

Chloe has begun to "move" around everywhere, and I mean everywhere.  She loves exploring all around her - especially where her Big Sister is playing.

The waiting game

Once the storm had settled - we knew almost instantly that we wanted to pursue the path of cochlear implants.  We are working with Boys Town National Research Hospital through this process.  We have a hearing aid from the Nebraska Loaner Bank program, although, with her growth spurts, it is difficult to keep an earmold to fit properly.  When using the hearing aid, we see no difference in her response to sound.
I am learning and reminded daily - to have PATIENCE.  We are very blessed to have discovered Chloe's hearing loss as a newborn - but, it also means we wait until she is older to take the necessary steps.

The encouragement of family and friends is overwhelming - words can not express how appreciative we are for all the prayers, shoulders to lean on, words of comfort and support.

During the waiting game, Miss Chloe Jean is growing in leaps and bounds.  She is developing her own personality and the love for her Sister is growing just as fast. 

Let's Rewind...September 2011

Late August to Early September - Chloe was diagnosed with bilateral profound hearing loss.  We were given the news and left in a hallway to wait to speak with the Doctor.  And the blur begins ...so many Questions...so many Emotions...so many Prayers...


Chloe Jean - 2 weeks

The question of "Why" - the denial - all the "What Ifs" - the guilt - the "What Nows"
I would explain the next few weeks as an emotional rollercoaster similiar to the grieving process.  It hurt knowing that she couldn't hear all the Love that surrounded her - the soothing lullabies her Big Sister sang to her over and over again - It was scary to know what the future would bring.

And then it hit me - while surfing the web, reading the daily news and another Parent's journey with their child born prematurely - SHE IS HAPPY!  SHE IS HEALTHY!  SHE IS HERE!  God blessed me with another beautiful girl and he will guide us through our new journey. 

The journey was just beginning - yet, it seemed like we had been traveling for miles!

Let's Rewind...August 2011

Our eyes sparkled when the Doctor announced... It's a Girl (we waited to find out, wanted that surprise).  Chloe Jean was born via scheduled c-section on Wednesday, August 24th, 2011 - she weighed 7lbs 1oz and was 20" long. 

Big Sister Sydney was in preschool - and patiently waited to come see her new sibling - her eyes sparkled as well when she walked into the room and found out she had a Little Sister!

Sydney Mae and Chloe Jean

Chloe failed the newborn hearing screening during our short hospital stay.  We were advised it could be fluid in her ears since she was a c-section baby.  The following week we visited the hospital again for another round of screening....failed.  And off to the first (of many) ENT appointment we went.