Moving forward

Thank you everyone for your thoughts and prayers. Receiving your emails and messages today while we sat in the family waiting room kept our minds busy and our thoughts positive. Believe us when we say that we draw strength from each and every one of you.

Chloe's surgery today for her left ear cochlear implant was a success!! She slept through the morning pre-op activities and did not make a fuss. She even slept in my arms as I carried her through the hall to the OR when we were called. She looked like an angel.

It has been difficult these past few weeks to digest the possibility that Chloe has not heard any sound or our voices for the past 5.5 months. We are not sure when she lost her hearing, if it was immediate on that first night we brought her in or if it was a gradual loss. It was always a question what she could hear or see. Either way, it saddens us to know that she has been 'in the dark' even for part of the time. We know she knew who we were and when we were near or holding her close. It's hard to explain unless you've been in this place. A baby always knows when her mother or father is near but when any of your senses suffers a loss, there are other ways that your body communicates. Deep in my heart, I know Chloe has heard us - all those precious moments when we sang to Chloe to keep her calm, prayers and nightly I love you whispers, Olivia singing her favorite lullabies and making kissing sounds over the speakerphone. She heard us, she felt us. Still, I think about how many times Olivia calls my name and how sweet that sound is and how calming one of our voices can be when she is upset and I think about how lost Chloe must have felt at times to be yelling out loud and feeling like no one was there to answer her. Maybe this is why her eyes have stayed strong so she can see where we are at all times. She is constantly looking around for us when we walk away.

Moving forward with this surgery is a big step for Chloe and for our family. Chloe was a champ, as she always has been in surgery. We are so thankful to her ENT for suggesting that we move quickly in our decision to go ahead with the implant. Like we said earlier, there is a chance of ossification of the cochlea. Most often, this happens within the first 6-12 mos after meningitis. As of two weeks ago, Chloe's cochlea was soft and clear but as the procedure moved forward, the doctor saw that the cochlea had indeed started to harden and it was a bit more complicated as he had first expected. He was able to find another area of the cochlea to properly implant, though slightly more difficult, and he is confident that all was a success. We will wait to see how Chloe does with the one implant. Her right ear, again, poses more difficulty in that her VP shunt will have to be moved and there are certain risk factors of infection involved but we will cross that bridge when the time comes.

For now, we are praying for a speedy recovery for Chloe. She has been in some pain today since waking from her anesthesia. Chloe has been fussy and tends to whine during difficult transitions or when she is tired from being worked so hard. Unfortunately, we have seen actual cries and big tears today. She is home, though, and resting in her own bed. The bandages will come off tomorrow and we will see her incision for the first time. It should heal over the next few weeks until it is time for her initial activation on April 20th.

We will keep you posted on any news. Until then, please keep her in your thoughts and prayers as she recovers and heals.

Much love and thanks,

Michelle, Reth, Olivia and Chloe