Evie's NICU Reunion!

On Sat., Sept. 26th, my husband and I and our 3 kids, drove over to Ankeny, IA to attend an Annual NICU Reunion! (Neonatal Intensive Care Unit) We had debated whether or not we'd make the trip, but were asked by three different people on Facebook if we were going. That's when I decided the answer would be Yes!

These are a few photos that I took of Evie and her NICU friends nearly 2 years after their stays in the hospital! Every child pictured was in the hospital at the same time as Evie was and we still missed two sets of triplets in these! Wish I'd thought to take their photos too!

Many of the photos include a little girl that looks like she could be Evie's sister, her name is Ava. She and Evie were put in the same room at the NICU because it was overflowing at that time with babies galore! They were allowed to be together because they both had CMV and were in "isolation" from the other babies.

Each baby, or "set" of babies (twins, multiples) had their own rooms. The isolation came from the fact that our girls were not allowed outside of their rooms. Even Santa Claus stayed at the doorway and we brought her to the opening for the photo op where he didn't hold her in order to keep from spreading viral germs!

As parents, visitors and nurses/doctors went into our girls' room they were required to gown up and don rubber gloves! These stayed in the room when leaving and were deposited in a bio-hazard trash bin. This was to protect all the other babies in the NICU from our precious, tiny, cytomegalovirus infected babies! Very Scary for us parents!!

To honor the occasion, I'm also sharing some of our photographed moments in the NICU before showing you how far the girls have come!

A tired Mommy and her itty bitty Evie, weighing only 4 lb 7 oz!

Look how tiny she was! We used the buckle to keep her bundled lower body straped in. Now Evie would hang over the edges of that seat!!

Peaceful Sleeper. Her head was so tiny.

Chris and Sara with their daughter Ava. You can barely see her she's soo tiny!

Jesse, proud daddy, snuggled up with Evie. We kept her bundled like this to encourage her hypertonicity to soften and allow her to work on her head and trunk control better. She couldn't curl into a fetal position on her own, we had to learn a special swaddle to accomplish it.

Santa Claus came early to the NICU and the nurses let us take off our ugly yellow gowns for the photo, but not the gloves... didn't matter one way or the other. I was still nursing her and was skin to skin (or better yet, skin to contagious slobber) with her, many hours of the day!!

She was just so tiny and sweet. Its amazing how far she's come in under two years!! We mustn't forget where we've been, for those experiences will guide us down the roads that lie ahead.

This is Erin, our fabulous NICU Physical Therapist!

Ava and Evie nearly 2 years later!! Ava wears a Hearing Aid in her right ear, and has a Cochlear Implant on her left side. Evie has bilateral Cochlear Implants.

Checkin' Each Other Out!


Four little sweeties that have grown so much!!! All born premature, all doing very well and thriving.

Say Cheese! We were completely in the way of a walking area, four girls on the floor and two moms sprawled out taking photos!

Gotta love Ava's inquisitive nature!! This has helped her so much in her development!

Having a heart to heart?

Ava discovered my crunchy hair, and her dad discovered my camera! I looked back to play with her at just the right moment apparantly.

Laughing at her fun discovery, and wincing a bit in response to the hair pulling. Moments earlier she managed to grab my nose and scrape the inside of it with her thumb. As I hear, this is a common war wound in their house. So worth it to get to bond with her some more!!!

One more 'check you out' session... meanwhile... Evie works to knock her Right CI off with her shoulder! So sneaky and awnry!!!

Evie with her NICU Physical Therapist, Erin, nearly 2 years after her 42 day stay in the hospital!

My, how time changes things!!

New Gear For My Ears!

Since Evie was 3 months old we've been struggling to keep her hearing devices on her tiny, thin ears!

Lately, this struggle has become more frustrating with her awnry determination to keep my hands off of her head!

To battle this obstinance, I've been experimenting with a number of options for her little ears and head. Here's a list of things we've tried and some photos of the more recent attempts to keep her listening.

Ear Molds

Snug-Fit with and w/o the Baby Worn set-up

The clear tubes originally used before Snug Fit

All of the above with Double-sided Toupee Tape!

Just Toupee Tape (which works well, but hard on her delicate skin)

Bandana Gear, Hats

Ear Gear sleeves w/clip attached and tape

Ear Gear sleeves w/clip attached and ear molds

The best to date: Ear Gear Sleeves w/clip attached and a Headband looped through them!

Our friend Clarissa, Evan's mom, did something similar for her little guy. Here's our version of Bandana Gear. The CI's are tucked into a fold in the bandana where she cannot reach them! She was so confused when she couldn't just reach up and rip the right one off. Funny!


Evie licking a ball before she throws it. You can see the Processor slipping out of the bandana.

She's so happy and keeping her hands off of the CI's for now.

My Favorite set-up so far! She leaves them on so much better and they don't fall on the floor either! It works for her since she's a girl, don't know what to suggest for you moms of boys though.

This wonderful vibrating foot massager has been a sanity saver!! Evie is sensitive to her surroundings and anything that vibrates makes her relax. Seriously, I can do anything I want while she lays like this... Put on her entire ear gear set-up, cut her toe nails, whatever.

Here she is, hard at work! Listening and not bothering with her CI's!! Good Girl Evie!

Here is Evie and her Super Ears buddy, Evan! He has special pouches for his CI's! His mom attaches them to his shirt with safety pins and has extra long coils to reach his head! Cool!

Playing and talking to her friend. She made lots of 'ah' and 'layaya' sounds while Evan clicked his lips and experimented with whimpering noises. They were so cute jabbering at each other!

A stare off before the heart break...

Evan had enough of sitting next to that girl and decided to pull her hair! After the crying stopped, she'd start up again and again. Just like a girl to hold a grudge!

Don't be fooled, this isn't an attempt to console her, he was going for her face again! So funny to watch... we'll see if she remembers next time they hang out.

This is a great shot of Evan's set-up though! These pouches were purchased online from another CI mom. Pretty cool for those active kids who are up and movin'!

Hope this post will give you some ideas to solve the never ending battle of keeping those heavy processors on their tiny little ears! Good luck!

PHOTOS OF EVIE'S HEARING HISTORY

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!