My beautiful girl, Evie, was born on Oct. 31, 2007 with a congenital virus called Cytomegalovirus (CMV). Many problems came from this virus, one of which was bilateral hearing loss. While spending her first six weeks in the Des Moines hospital NICU, we found that she wasn't responding to sound. After two failed hearing tests, an audiologist performed a more comprehensive one (an ABR). At five weeks old she was diagnosed with profound hearing loss.
By this point, Jesse and I had already accepted that she was without sound. That's not to say that it was easy to move beyond it, but at that point in her life, hearing seemed to be less of a concern.
Evie underwent 42 days of a chemo-like treatment to fight off the CMV. During her stay in the NICU, she recieved 5 blood platelet transfusions, 2 MRI's, an x-ray, tube feedings, multiple IV's including a PICC line in her leg for the duration, and a battery of tests which left her heals bruised from the needle pricks. The medication she was given was called Gancyclovir. It was developed especially for infants born with CMV. It is so potent that the nurses were required to double glove before handling it! Yes, that is what they pumped into my poor 4 lb 7 oz baby! Each treatment lasted an hour and was given twice a day via the PICC line in her leg that led to a major artery near her heart.
She did amazingly well, and when the treatment was complete they discharged her. She went home with us on Dec. 15, 2007. That was a wonderful, glorious day! Her big brother and sister were so happy to finally see and touch their sister for the first time! Evie was in isolation from the rest of the NICU and couldn't be brought even to a window for them to see her. Plus, she was born during RSV season and no children were allowed in the NICU.
Evie got her first hearing aids at 3 months old. They were baby pink and super tiny! Even then, they were way too heavy for her floppy ears. The audiologist told us that she may not recieve much from them as her hearing loss was found to be Profound in the areas of speech. It was exciting to have her respond to loud clapping and tongue clicking though! Evie developed a sensitivity to vibrations immediately and has always loved to produce them herself.
Along our journey, we decided that we wanted to give Evie every possible way to communicate that we could give her. We began learning sign language when she was diagnosed at 5 weeks old. Later we had an amazing woman from the AEA program come to our house and teach us all sign language. She continues to work with Evie every week, and we feel very blessed to have her in our lives. So many of our new friends have yet to find such help from their communities.
We also decided that we wanted to give Evie sound. Every parent is faced with hard decisions about their children at one point or another. Our decision was made through much prayer and support from our family. We struggled with the fear of what major surgery might bring to our daughter. But what we feared more was that our daughter might be isolated due to her silent world. Evie suffered neurological damage from the CMV, yet no one can estimate what her future will hold. She is delayed in every developmental aspect of her life. How could we allow her to fall further behind because she couldn't hear the world around her? We couldn't, not with the amazing technology available to the deaf.
Evie went through more audiological tests and was cleared to recieve one Cochlear Implant (C.I.) in her right ear after she turned a year old. On November 6, 2008 I left her in the very capable hands of Dr. Gantz's amazing team and walked out of the O.R. in tears. Three hours later she was in recovery! After four weeks of healing, she was activated/connected to her external parts and heard noise for the first time with her CI on December 5, 2008!
Since then, she's been learning to listen, learning the importance of sounds, learning to copy sounds and learning to speak meaningful sounds! Not only that but she is recieving sounds that she then reacts to on a consistant basis, (ie... where's mommy's nose? And then she touches my nose!) She is learning some sign language as well. She signs 'more' and now 'diaper' and understands the signs for 'milk' 'eat' and 'applause'. She absolutely loves to be praised!
Over this summer we began the process of pushing to get her left ear implanted. Very quickly that resulted in an actual surgery date! It happened so fast! On July 16, 2009 she recieved her second or sequential CI!! Things went amazing and we met a new friend with a daughter who had a bilateral surgery earlier that day. August 27, 2009 Evie's left ear was activated. She didn't pay much attention to the noise since it was so quiet. Since then we've been fighting to just keep both CI's on!
Evie is already locating sound better! That is so exciting! It is crucial that she be able to locate dangers quickly, as well as, voices in daily environmental settings.
Evie is such a trooper, and I am so blessed to be her mommy! God has shown me time and again that He has a plan for us. And though it seems rough at times, He continues to bless us with love, happiness, joy and wonderful family and friends! We will not go through this life with Evie without purpose. God has a purpose for Evie, and us, through these hardships and our joys. We want to encourage others and form supporting friendships with those out there in similar situations. God bless you all, and thank you for your continued support through prayer. My baby girl wouldn't be alive without it! You too, have an amazing purpose in this life!
Born Halloween '07 at 4 lbs 7 oz
Our tiny baby w/a feeding tube in
Going Home mid-Dec. '07 weighing just over 6 lbs
Big Brother Ian & Big Sister Kira hold Evie for the 1st time ever!
At 3 months old, Evie is getting her Hearing Aids! They are testing them here
She fell asleep during the appt. The sparkly 'bling bling' molds were fun!
Had to hold the H.A.'s on with headbands at first.
My growing Masterpiece!
Morning of C.I. surgery 11/6/08
Just after surgery, hungry, tired and wearing her new medical bracelet from mommy
Her new friend Kaci the Koala
Going home soon!
Ouch! 12 stitches!
Homemade dressing after the first fell off
The swelling went away and the bruises appeared. You can see the lump where the implant is.
Activation day! 12/5/08
We love pink! This is the babyworn set-up. She giggled at her first sounds!
Evie falls asleep for the first time, while hearing!
Big Girl CI! Stickers on her silver CI w/out babyworn cords!
Evie, listening to loud clapping noises that she's making and loving it!
Listening to her brother and the duck toy.
Morning of 2nd CI surgery! 7/16/09
Zonked out with her bottle in hand.
Evie and mommy made new friends at the hospital!
Back at home and feeling good!
Wearing her CI over the bandage!
Ouch #2! 16 Stitches this time!
Falling asleep while hearing, totally healed on her left side.
Happy Girl playing at home and listening!
Evie plays the piano with Nana for the first time! Loves the noise!
Activation Day! 8/27/09 playing peek-a-boo with her sister!
Kaci the Koala also had a sequential implant surgery, Mommy operated on him while Kira assisted. He came to us as a left sided implant patient, so when Evie got her sequential surgery done, Kaci did as well. Now they are quite the pair!
