Day 8.

Yesterday was 1-week post-op and she is doing fantastic!

After we took her q-tip off on Christmas night, she still had quite a bit of swelling. Like her head and ear were literally touching. And they don't normally. It's hard to tell in the picture. But her ear is fat.



(Day 2. Just after taking off that horrible hat. Sponge bath. She sat so still.)

But the swelling is pretty much gone from her head and face. And her tiny black eye is more of a yellow eye now.

And the incision looks really good, although it's still covered with a lot of steri-strips. We've avoided tub baths and full-on hair washing, although I did put her in the sink last night. (She lays down in the tub as soon as I put her in and the incision needs to stay dry and bacteria free, so we've been avoiding the tub.) I just felt like she needed to be submerged in water to get good and clean after a week with only sponge baths.






(Pics are from day 4.)

She's been on an antibiotic (remember all the puss?) and ear drops (since they took out the tube and put her ear drum back together again...similar to Humpty Dumpty) but no pain meds or Tylenol since last Thursday morning. She does favor her right side and won't lay on that side or let me hold her on that side. We've been taking toys to bed with us to keep hands occupied if we wake up instead of messing with our head. That little trick has worked because she's barely laid a finger on it. And we finally wore an over the head shirt on Friday night. (Daddy was worried that Mommy might harm EK in the dressing process, so it's been footie zip-up pjs for the week. It is a little like dressing an agitated octopus when you dress her, so I can see where he would be concerned.)







This is day 7. Not much different than above except swelling gone.

I mean, this chick is a rock star!! Major head surgery...no problem for her!! After the removal of the ROLLS of gauze, she's been 99% back to normal. Maybe a little extra clingy to Mommy, but no complaining about that.




Oh....Happy New Year's Eve from our little dysfunctional family to yours.
Just keeping it real...kids all smiled out, I needed a snack and Kenny standing a little too close to the light. Mood lighting, perhaps?




Activation Day in t-minus 3 days!! Stay tuned.......

Germs, delays and surgery. Merry Christmas.

I started a blog post documenting our delay and the epidemic we experienced over the last two weeks, but decided no one really wanted to know about that.

Just know that everyone in this house but Kenny has ran a fever, had body aches, puked, coughed lungs up and had horrible runny noses. All at the same time. And for 8 days straight. It was a nightmare.

And everyone was finally well just in time for EK's surgery date, only to be delayed the day of when the surgeon came down with pretty much the same ailments.

I realized later in the day on the 16th, just how worked up I had gotten myself over this surgery. When it was cancelled, we were both completely bummed. But it was almost like it was a relief all at the same time. I was mentally, emotionally, whatever you want to call it...exhausted. Wiped out by all the surgery hype, only to come crashing down when they told us it was a no-go for the day.

I knew we were doing the right thing, but I don't care how right it is or how much it's needed, having your kid's head split open is never something that gives you the warm fuzzies.

We'll call it the I'm-gonna-puke-ies. The official term.

By Wednesday, we had her surgery rescheduled for December 23, which was a big answer to prayer. You see, there's this little thing called out-of-pocket-maximums (it's not a small number, trust me) and fortunately (or unfortunately, depending on how you look at it) ours had already been met for the year. So getting this done in 2013 was a huge deal for us.

Huge.

Fast forward to Monday....this time around I didn't get myself near as worked up. Call it experience with the whole process...maybe. Although I attribute it to the tons of friends and family who I knew were interceding on our behalf. A God given peace. I was thankful for that. Plus, our surgery time had been moved up to 10am at the insistence of Dr. Gadre. Made me feel tons better about the whole situation. Especially after he told me on the phone that bad things happen when you start such complicated surgeries that late in the day when everyone is already tired. Ok. Stop talking. Didn't need to know that.




Sister did pretty well without any breakfast upon waking. But she knows what a hospital is and DID NOT taking kindly to being removed from the security of her stroller for vitals, etc. She kept trying to climb back into the stroller and buckle herself up. As if that meant she could leave. This flipping out, latching on to mom/dad, retreating to stroller routine continued each time someone new entered our little cubby until we got a small dose of versed and all was well in her floppy little world.




The surgery took about 4 hours and the hospital did a fantastic job of keeping us updated every hour. Her audiologist, Dr. Katie, even saw us in the waiting room on her way in and out of surgery and stopped to chat and fill us in on the progress. (Her job for the day was to test the implant once it was placed to make sure it was working before they closed her back up. Success.)

Once done, Dr. Gadre filled us in on all the details. All had gone very smoothly. And we have some pretty cool pictures. Well, cool if looking at the skull of a 2-year-old is your thing. He was even able to complete the procedure as normal instead of doing things a little differently as planned due to her tiny ears. Apparently hitting a 2mm hole situated between her facial nerve and nerve of taste isn't an easy job on someone with underdeveloped mastoids. But he did it. And I don't know what that means, so don't ask. He also said he removed a bunch more puss behind her ear which would have never gone away unless physically removed. Another result of 20 months of untreated ear infections. I got the feeling by the way he talked we are referring to a bunch of ear infections to have that much puss. Makes me sad.

He filled us in on all the do's and do not's for the next few weeks, warned us that she looked like a giant q-tip, gave us his home phone number and urged us to use it if needed and told us to let him know when she started college. [Smiles.] I know I literally have to wait hours each time we have an appointment with him, but it's completely worth it to feel this comfortable with the doctor caring for your child.

We finally got to go back and see her and yes, resemble a q-tip she did. They continued to monitor her and around 5ish, when they were satisfied with her vitals and level of awakeness, (I made that word up. You're welcome.) they sent us on our merry way.




The trip home was fairly uneventful. Read as: no puking. Which I'm not used to because I can just talk about being put to sleep and I'm yaking all over the place. Nice to have a kid who doesn't respond the same way to anesthesia. Kenny was happy. Since he's usually the one having to deal with that. But by the time we got home, we had an unhappy little chicken on our hands. Nothing made her happy, no position was right, she was still slightly drunk and agitated by the whole thing and had discovered her new hat. And didn't like it at all.

She slept ok during the night and we kept her loaded with pain meds to keep her comfortable. I slept in the floor beside her crib part of the night. But I'm not telling if that was for her or for me.

We took her turban off last night and I'll be honest, I was shocked at how much hair was gone. But it will grow back, I know. The incision looked good, still just pretty swollen. She was so happy to be able to scratch her head and even sat perfectly still while I gave her a sponge bath and semi-washed her stinky head without getting anything wet.

Honestly, she really has done as well as I would have expected. She's been fussy and ticked off, but who wouldn't be with an extra 10 pounds of gauze wrapped around a swollen head. She's done the whole play/cry/hold me routine over and over, which is totally fine. We are her parents. It's our job to hold and comfort said fussy baby.

Her activation day (AKA Happy Birthday EK's Ears Day) is still on January 3rd. Until then, it's just a hurry up and heal wait.

To top off the awesomeness that happened on Monday....December 24th marked 6 months since a frail, scared, malnourished, 13 pound toddler who could barely move was placed in our arms. It scares me to think about where she was 6 months ago and makes me so excited to see where we are now. We are so blessed to have been chose to be her parents and to have a front row seat to her story of redemption, love and adoption as we pray for her to one day accept Jesus as her personal Savior and even understand just a tiny bit of the sacrifice that was made for her. And I'm definitely not talking about us as her parents...




What a Merry Christmas....new ears for EK. It'll be a year we won't soon forget.




And a journey that we have just begun...

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FAQ's: Volume 2

So I missed a few questions in the first round of Cochlear Implant FAQ's and I appreciate y'all asking and letting me explain. Here goes...

How will we wash her hair, go swimming, play at the splash pad, etc without the external piece getting wet?
First, it's not attached to her head permanently. I've had several folks ask me that, which is a completely legit question. We will be able to take the external piece off to give her a bath or go swimming. (Take a nap!) Although, it is water RESISTANT (not proof!) and I've heard it can make it through a drop in the bath tub, makes me nervous to try that feature out. If you think about it, there are lots of noises that go along with bath time...splashing, water running, squeaky rubber ducky, etc...we'd be doing her a disservice to not let her hear those things. On the other hand, her favorite thing to do in the tub is to lay down. We'll just see how that goes. But there are also now aqua accessories, which include a little CI shaped ziploc bag (sorta) to wear while swimming. I've heard it's not comfortable to wear and sound quality isn't as good, but those are the things we'll just have to see how she tolerates. Splash pad or running through the rain should be good (so I'm told). Still makes me nervous. I mean, you wouldn't leave your super hi-tech laptop outside in the rain...similar concept. At least in my brain.

Is she getting CI's in both ears?
Not right now. We are only doing the right side this time around. A lot of doctors won't do bi-lateral implants (meaning at the same time), but many kids (especially with a profound hearing loss like EK) end up getting a second one down the road. And then there are also tons of kids with only one. Or one CI and one hearing aid. It really depends on how the individual child does. Our plan is to just see how things go with her, see how her language develops, or maybe even as she gets older see what her preference is. I've done lots of research and talked to parents on both sides of things... right now we just wait.

What about the inside parts...do those have to be changed?
Over EK's lifetime, she may be have to be re-planted (I just made that term up) two or three times. As the technology on the outside improves, the inside will eventually be obsolete and have to be upgraded. Fortunately for us, Cochlear America just came out with a new processor this fall with the latest and the greatest technology. The Nucleus 6. Yeah, the 6. I wonder if we'll all rush the Cochlear store and camp out when the 7 comes out? Kinda like the iPhone 5... just want to be prepared...

We are getting closer to surgery day! T-minus 8 days. I had a complete moment of panic yesterday when I thought that it was THIS Monday and I wasn't mentally ready!! I'll blame it on a couple of snow/ice/sick kids days and just generally losing my sense of what day it was. The days just all run together when you never leave the house. But alas, still one more full week for me to fret over it.

Continue to pray that we get a phone call asking us to come to the hospital early instead of in the afternoon......