Thursday, March 28, 2013

Our Riley at Riley

I know you are blog? new name? new style? What is going on over there at Dive to Diapers? Well yes, I have an awesome new style going on with my blog and I wanted to change the focus to Miss Riley Mae (hence Mae flowers). Everyone has heard the phrase "April showers bring may flowers"!? Well I think we have had some showers these past 5 months but flowers are coming really soon all because of Riley Mae (hence Mae flowers). I will get more into the change later but for now I have more important things to talk about.

This week we packed our little family up and went to Indianapolis Riley Children's Hospital for a two day Cochlear Implant (CI) evaluation. We meet with the whole team from Indiana University and Riley Children's Hospital. To say in was amazing is an understatement.

Our girl totally rocked! Tuesday we had 3 hours of booth testing. Basically she sat on my lap, and played while the audiologist talked, and put sounds in the booth. She smiled, opened her eyes BIG, or turned when she heard sounds. She did this for 3 hours without a peep. She didn't cry, she just sat there, looking pretty. The audiologists were so impressed by her and how good she was...yup, that's my baby!

The results were inclusive. She is profound in both ears, which means her hearing is getting worse. Below is the speech banana that states what she can and can not hear.

Speech banana - the range of frequency and amplitude (pitch and loudness) of average conversational speech

This diagram explains what Riley can hear. Without her hearing aids she is hearing at around 100 decibles which is in the profound range. With her hearing aids she is hearing in the 80-70 decibles. Anything above that decible, the dog barking, baby crying, watch, water...etc., she can NOT hear. She can't hear all those letters in the "banana" which means she will not be able to detect speech and more importantly develop speech.

This day was just a reminder that Riley is deaf, she can't hear, even if I think she can. I trust these audiologists and trust the team.

Wednesday was the big day! We had a CT scan at 8am, met with the surgeon and had a 3 hour CI orientation with the audiology team ( I so shouldve been an audiologist). The CT scan was great. She didn't move a lick and we didn't even have to sedate her. God she is so good!

Dr. Yates says her CT scan shows her cochlea is in tact and the CI should have a positive outcome. He also noticed something in her CT that may have caused her hearing loss. I don't know all the medical terms so after I meet with Jeannie tonight I'll have more information.

He was excited to get moving and scheduled her surgery for May 14! May 14 this year. Ponder that for a moment. In almost one month our baby will have her implants (they won't be activated yet) but she will have them. She will be 7 months, the second youngest at Riley Hospital to get them. I am over the moon with excitement! I was happy with 10 7. Holy Moly:)

Then we met with the audiologist to do our orientation and pick our CI company. We decided on Advanced Bionics to be our CI provider. One because they have the only water proof device, and two, they are coming out with a new processor that is skinny and sort of looks like her hearing aids.

Josh and I felt that this company was more "sporty" and had some great things to offer. Now all 3 companies are good and very competitive with each other. However AB is the only company with the full gone waterproof device. Josh's parents have an inground pool and I love the water so I would want her to hear the splashing, to be able to swim, and most importantly dance in the rain!

So our Riley trip couldn't have gone better. Next time we visit we will be staying for surgery. Here's our little Riley baby.....

Monday, March 25, 2013

LIfe Lately...

I am like the WORST blogger on the face of the planet. I can never seem to bring myself to catching up and blogging. I read other blogs of course...but when it comes to my blog. NOPE...never time. That is enough. I love it here and I am going to blog more! Pinky promise.

So much has been going on that I wonder how I could NOT blog. I have to catch everyone up on so many things going on with the Niedzwicki's.

Riley is AWESOME. She is such a joy in everyones lives. She has been growing by leaps and bounds. I have been having so much fun with her while she explores her world. She is almost 6 months and Josh and I love her to death. We have been just spending as much time together as possible. Look at that could you not just smile....

She got baptized last week and that was a big week for our family. Our faith is really important to us and we had everyone there to celebrate Riley. The whole church was involved and we got the chance to tell her story about her hearing and her journey. She is one lucky girl and has the best Godparents EVER. I know they will guide her and see that she is always the person she wants to be. I couldn't be more happier with having them in her life. I hope she uses them as guidance for decisions, questions about life, and calls on them to be her friend and godparent. IT was a great day!

Life has just been hectic and busy...but good. I am just trying to stay afloat with all the things between family, work, Riley's appointments, hearing specialsts, spinning and being the best mom and wife I can be. I have a lot of updates on her hearing but I will save that for a later post. This week we go to Riley Hospital for her CI evaluation and orientation. I can't believe it's finally here!

She is now hearing at 65 decimals on the speech banana understand that right?? I will explain later once we know for sure after these next two days at Riley Hospital. Tuesday we have 3 hours with the audiologist and testing. I am sure we will walk about knowing exactly what she's hearing or more like not hearing.

For now I love being a mom, excited for some WARM weather, taking Riley to the zoo and putting her in all her summer clothes.

Here's Riley's reaction to the IU basketball game. Just like her Uncle Corey!

Have a great week.

Monday, March 11, 2013

5 Months Young

Miss Mae,

I am sitting here thinking to myself that I still can't believe you have been in my life for ONLY 5 months. I can't remember life without you. I can't recall not having your beautiful smile and your sweet eyes to make me happy. I didn't know that I missed you until I had you. I didn't know what motherhood would be like until I was blessed with you.

This month you are growing like crazy, I can barely keep up. I don't mean only in weight but in personality. Each week you have a new trick. First you found your tongue. You would sit there and just stick it out all day. Try to grab it, lick everything and you were a slimy mess. Last week you wouldn't stop doing raspberries with your lips and mouth. This was the cutest thing in the I didn't mind the spit flying all over and changing your about 3 times a day. Yes, this was the week we invested in some bibs.

Now you love looking in the mirror. You know your mama is there but can't figure out who that adorable baby is in the picture. You see me and a big huge smile comes across your face. I love it. I live for it. You love watching me get ready in the morning. I just sit your little chair in the bathroom and you talk away while you watch me blow dry my hair and get all beautified.

You haven't quite mastered rolling over or sitting up by yourself. You neck and head is getting stronger by the day but I am not pushing it. You are a late bloomer but once you get run with it. I don't want my precious baby to grow up just yet. I love this time.

This past month has been such a fun month. I love watching you grow and explore your world. This next month is a big month. We have your baptism this coming weekend with all family coming in town. I will have to tell you that you are one lucky girl to have the Godparents you do. Aunt Jill and Uncle Corey are going to guide you and lead you to things you never knew were possible. They will be support, a mentor, a friend and an advocate for anthing you want to accomplish.

This month is really the official start of your hearing journey. We go to Riley hospital  next week to get your evaluation and CT scans done. By the end of March we will have a date set (hopefully) when your surgery will take place. We are one step closer baby girl. Hang in there!

I can't tell you what all you have brought to my life. I never knew I could love someone so much. I am excited everyday to be your mama and look forward to being there for you through this journey of your life. I hope you dream big,  believe there is nothing greater in this world, to color outside the lines and always remember that the decisions your dad and I make are only for you. We love you more than anything, more than infinity and beyond.

Love Mama