Cochlear Implants--- Almost

Some Pics from Ryan's non-CI Implantation

Below are Thursday, March 14th, Pre-Op day.  We made sure all our ducks were in a row.  We also had an EKG just to get a good pic of Ryan's heart.

These couple below are at about 6:45am-7am on Friday morning.  She's all ready to go and we're getting one more round of questions before they take her back.

Pics with Daddy, and one of our two surgeons, Dr. O'Reilly.  He's awesome.

Below is Ryan right after the surgery.  We were watching her peacefully sleep, and wishing the docs had not opened her up to only find an ear infection.  After the incision and examining her ear, the surgeons determined that the middle ear infection was too risky to do implant a CI.  Surgery postponed and tubes were placed in her ears instead.

Again, immediately after surgery in the crib, and these two on the right are the evening of the day of surgery.  She had a dirty face from eating in the middle pic.  Although at the time I thought she looked good, I now would say that she looked like a train hit her in comparison to how she looks and feels today.

Saturday morning after taking off the bandage.  Doing well.  Just sad she'll have to go through this again.  And sad we'll have to go through this again.  Sigh.  We will all persevere.

We should find out this week when they will be able to reschedule the surgery.  On Friday morning, the surgeons told us probably 8 weeks from now.  Hopefully sooner, but at this point, I'm just grateful for anything around 9 months.  So goes the journey to hearing.  This was a nice bump in the road, but we'll keep plugging along.

Third Time Must Be the Charm

We are home from the hospital without cochlear implants.

Ryan was initially scheduled for Cochlear Implant Surgery on March 4th.  Due to some miscommunication, this date changed to yesterday, March 15th.

Her pre-op appointment went really well on Thursday.  We told the nurse and then the Nurse Practioner that Ryan had been getting over her cough she had had.  The Nurse Practioner did a basic check-up, including height, weight, eye check & ear check.  She told us to be at the hospital on Friday morning at 6:30am for a surgery time of 7:45am.

So, like any crazy parents, we woke Ryan up early on Friday morning (1:45am) for her last bottle until after surgery.  Then we were up at 4:45 and out the door on our way to the hospital by 5:40am.  We were checked-in and back in the waiting area by 6:35am.  Ryan was getting all her attention by the medical assistants and nurses to ensure we were all set for her bilateral CIs.  About 7:30, our surgeon, Dr. Robert O'Reilly came by, said hello, and gave us some expectations on what to expect coming out of surgery.

After some silly gas, the anesthiologist took her from us and we parted ways.  They escorted Sean and I back to the parent waiting area, where we were prepared to potentially wait for 6 hours for our girl to be return.  It was 8am when we sat down.

We were updated at about 8:45am, that surgery had finally begun, and that Ryan had been a hard 'stick'.  I found out later that they poked her little veins 7 times before they got a good one.  (Glad she was asleep for all of that.)

At 9:05am, our two surgeons came walking towards us.  And, of course, the first thought that goes through your head is holy $hit.  The first words that came out of their mouths was, 'Ryan is fine, she's doing well.'  They went on to explain that Ryan had an inner ear infection, and they only caught this after she had her first incision.  They cancelled the surgery, and put tubes in her ears instead.

To say the least we are very disappointed.  We know that everything happens for a reason, but knowing that she would have been implanted at 7 months would have been such a blessing.  We have a follow up with our surgeon next week, and most likely they will reschedule the surgery for 8 weeks from now.

Let's hope that the 3rd time really is the charm.

Five Days and Counting...

Five days...Just sayin'...

We are soooo ready for Ryan's surgery we can't hardly wait.  Although, I will say that this week will prove to be pretty interesting.  Bryce was sick early Friday morning-- take off his sheets sick.  And, then it was take off mom & dad's sheets sick.  That was a fun 4am morning.  Clearly, we didn't go back to sleep and somehow I managed to be at work by 7:30am, all 'bright and bushy-tailed'.  Sean was a trooper and hung out with Bryce all day on Friday.  Bryce watched 'The Incredibles'.  Three times.
Sigh.

With that event, Saturday morning was cleaning day.  Extra thorough cleaning day.  All the toys were washed and everything was Clorox-ed down.  Ryan hasn't managed to get sick at all, however, we are still working on getting rid of her cough.  Hopefully that will happen this week since G-ma Krenz is coming to town and Ryan will not be entering the Petri-filled daycare.

And surprise, tonight, Bryce threw up again.  In the kitchen this time.  Poor guy.  I feel so bad for him, and yet as soon as he does that I grab Ryan and run out of the room.  She cannot get sick this week.  No way.  If she has any type of cold or virus they told me that the surgery will be postponed.  Not gonna happen if I can help it.  I was on the verge of getting a hotel room this week, but then I thought, that would have more germs than our home.

So anyway, everyone please say a little prayer.  Get us to and through Friday.

7 Months-- Getting to Hearing

Ryan girl, you are 7-months as of March 1st.  You are the cutest bald baby.  Although, I must say, your hair has started to come in-- it's a very light brown.  Definitely not a blondie.
You are probably close to 16lbs, and a couple weeks ago at the doctor, she told us that you were 10% for height and 30% for weight.  Again, those cheeks are not getting any smaller.  You are sitting up on your own, but still manage to fall over some times.  You are definitely babbling away, and next Friday, March 15th cannot come soon enough-- you will have your surgery to receive cochlear implants.

We chose this for you-- cochlear implants.  We know that God made you the way he made you-- deaf.   However, mom and dad are choosing a life right now for you so that you can hear, and you will learn spoken language.  You will not learn sign language-- well, maybe some baby sign language-- 'more'; 'milk'; 'please'-- but not much beyond.  You will learn to speak, just like your little baby friends; and most likely, you will catch right up to them in your speech development.  You are still young enough that mom and dad do not notice that you have a hearing problem, beyond the obvious of not responding to sound.

If you choose to do so when you are older, you can choose to learn sign language.  You can choose to be a part of the deaf culture where many people rely on sign language as their first language of communication.  If that is the life you choose, you are certainly able to do so; but right now, we are the parents and we choose for you to live like we live-- hearing and speaking.

I write this because there are a lot of parents out there who are at a crossroads.  They are not sure what is right for their child, and want their child to be able to make a decision.  It's of our opinion that babies, who are at a critical time in their life of learning language, will be at a significant disadvantage if they do not learn to hear and speak as infants and toddlers, similar to their peers.  If this is not learned at a young age, it is much harder to catch up and by the time they can 'make their own decision' it may be very hard to learn spoken language.  I'm 100% sure it can be done, however, it won't be without serious rigor and discipline.

I just hope that this will help other parents out there in making a choice for their child.  The parents have to choose right now, not the baby.

Off the soap box...


A couple of funny moments from a few weeks ago...

She is learning how hold her bottle herself.  She is at the cutest moment-- trying so hard in this video below.

In this video-- which is one we should just go ahead and post on YouTube, Ryan is dozing off.  It's pretty comical.

Set Backs

Well, what started out to be a fantastic week took a 180 degree sharp turn by its end.  We started out the week on Monday with Ryan's official 6-month check up at the pediatrician.  Healthy baby girl statistics netted out at 10% for height and 30% weight.  Again, I think those cheeks make up a good portion of that weight.  She had all her little vaccinations and she only let out one yelp, and a tear was shed, and that was about it.  Tough girl.

Wednesday, we went down to A.I. Dupont in Wilmington for two reasons.  First, we picked out her cochlear implant manufacturer and afterwards, we went over to the research facility to do another (unseated) ABR.  After a very thorough review of all three devices (thank you Leisl!) we are very happy to report that Sean and I chose Advanced Bionics as our manufacturer of choice for Ryan, for many reasons.  We are very excited to be partnering with their team.
After this, Ryan and I went over to the Research Center across the street.  They wanted to do another ABR with and without her hearing aids.  They basically wanted to get a baseline of brain measurement prior to CI implantation.  This way, after the CIs, she'll have a follow-up ABR, which will (should) display drastic differences in brain response.  I will say, that it was only slightly disappointing that there was still no brain activity even with the hearing aids on.  (sigh.  Please hurry bionic ears.)
We left the hospital that day with a planned date of March 4th for Ryan's surgery.

Unfortunately, (here's the 180 degree turn) Thursday morning, I received a phone call where I found out Ryan's surgery had been 'bumped.'  I won't get into the details, except to say that my heart immediately sank.  They have rescheduled her surgery (supposedly) for March 14 or 15th, but we have not been able to get confirmation on that yet.  We are so disappointed and just keep hoping that things will happen quickly for Ryan.  Additionally, it's not like Sean and I don't have careers.  It's so hard planning things for the both of us between traveling and the corporate world, it's tough.  I really don't think people at the hospital understand that fact, but I guess we will have to deal.

Say a little prayer for us and Ryan if you are reading!

Short Flicks

Some movies this week--

Bryce practicing his manners.  Then watch the video again and notice baby sister in the background.

Ryan talking/whining with daddy in her Juicy outfit from Grammy Krenz.

Out of Town

This week was interesting.  It was my first time out of town for more than one night.  I wouldn't say it was interesting because Sean was able to run the house the way he wanted to run the house, nor because I was receiving pics of Bryce and Ryan in sooooo uncoordinated outfits.  Nope, it was interesting for me because I came to the rationalization that if I can pump on a plane, I can do anything.  I swear, the things we do for our children.  I know everyone has their own story, but let me tell you just a few fun facts about the last four days.  And, keep in the back of your mind that each day I was either presenting in front of 60 people or in serious meetings where I wear my business 'mask'.  (Actually, my husband and my brothers would most likely argue that, my business 'mask' is probably less of a mask and more of who I actually am.)

Questions to think about:
- Did you ever see a man's face go to the bright color of red when he thinks he has to take out all the pieces in my pump bag just to re-run them through security again?  (This TSA agent could not have been older than 22.)
- Did you ever know that apparently, it is a big deal to get a fridge in your hotel room?  Um, yes, apparently.  Even if you specifically state that you are a nursing mother, the eye roll is just unreal.
- Did you know that one can pump over a gallon of milk in less than 4 days?  Yup.  And pumping on a plane is a new adventure.  'Nough said.
- Did you know that bringing back milk on a plane, in a cooler, with ice packs in a checked bag is a pain in the A$$?  And, BTW, since milk is a liquid, it does leak...yes, it does-- especially when you don't have a good top to the gallon.

Anyhow, I just thought that it would be fun to reenact my week.  On a seperate note, we are officially on for Ryan's surgery on March 4th.  Next week we pick out a manufacturer for her CIs.  That's a whole other blog in itself.

We are T-minus 17 days until Ryan's surgery.  Exciting and scary.

6 Months!!!

Happy 6-Months Ryan girl!

You turned 6-months on February 1st, 2013.

I really don't think you grew all that much between five and six months, although, given your diaper size increase to 3, I'm thinking at least that little bottom grew.

Your face is still 110% cheeks.  You really aren't all that chunky, but you certainly look it because of your cheeks!  We haven't been to the doctor yet for your 6-month appointment for weight and height, but don't worry, you will make it there in a couple of weeks.

You are at a tough spot for clothing.  All your 3-6 month still fits, but most things are a little short or a little tight.  All your clothing that is labeled 6-12 months overwhelms you.  That fact will make for interesting 6-month professional pictures this weekend.  (that's a whole other story which involves one of my favorite brands Burberry-- maybe for another post.)

We are getting more consistent with wearing your hearing aids this month.  Most likely it's because they actually fit you now.  Once the molds for your ears were fixed there really hasn't been much hassle with them.  You still haven't managed to pull them out except one time a few weeks ago.  Your friends at school love to pull them out though-- your teachers are definitely entertained by this.  

Your brother loves you so much.  He wants to play with you and cannot wait for you to be bigger.  He's such a great helper for you, and sometimes gets jealous of you if mommy or daddy is reading to you and not him.

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It's a Date!!!!!

Last Monday we spent from 1pm to 5pm at Nemours in Wilmington.

1pm:  Audiology testing with hearing aids

• Never underestimate the knowledge, patience, and detail-focus of a pediatric audiologist.  Among a million other things, they are trained to know whether or not a child of 6-months in age can hear based on behavioral observations.  Ryan spent an hour in the 'audiology booth' sitting on my lap whereby sounds in varied pitch and frequency were tested.  The audiologist knows whether Ryan responded to sounds by watching her facial expressions and cues.  A few things that are noticeable when Ryan hears is her blinking or her binky sucking changes, or most obvious she turns her head to look for the sound.  
• Of no surprise, Ryan failed miserably, but I will say it was pretty entertaining.  I'm sure we'll be in the booth or something similar many times in the future
• Thank goodness Ryan was a very happy baby all day, otherwise this could have been miserable for her, for us, and for the audiologist

2:45pm:  Optometry

• Eyes dilated.  Ryan already has two up on me now-- she's had a MRI and her eyes dilated-- two things I've never experienced in my lifetime.  She's a busy baby.  
• Everything went very well.  She has perfectly normal eyes and vision, ruling out any syndromes that could be associated with vision

4pm:  Surgeon

• After a rich discussion, our surgeon agreed to do Ryan's surgery as early as safely possible
• This is still tentative, but most likely she will officially have cochlear implants on March 4th!  Yay!!!!  7 months!

Needless to say, Sean and I are very excited about this surgery and are looking forward to beginning her life with her ears.   Can't wait.  Now we just need to make a final decision on which manufacturer to use for her implants.

Ryan getting her eyes checked.  Girl had her eyes dilated!

Hodge Podge

Just a hodge podge of stuff that I'm posting tonight.  Enjoying the little things these days...

Ryan is really doing a great job at sitting up on her own.  This short video was taken a couple weeks ago.  Please note that hearing aids are in!  Go mom!

Here's Bryce and his favorite car.  He has played on it since he was 19 months.  The horn doesn't even work anymore.  And guess who knows how to sit on Bryce's favorite car now?!?!

And these are two of the cutest kiddos ever.  Note that Bryce is chewing his gummies and I sure hope that Ryan doesn't look like she has only a mow-hawk for much longer.  Sigh.