Tuesday, November 27, 2012

Life's Challenges: a Riley story

Today I am linking up with another "mamma blogger" Becky to tell my story...


The last time I've blogged was almost a month ago....wowsa! I have been a bad blogger and hope to pick my game up and blog much more.

My little family has gone through some challenges the past month and to tell you the truth, I wasn't sure if I was going to keep blogging my life on the internet or not. Don't get me wrong, I love to blog and it sorta has been like theraputic for me (which I am sure it is for everyone that blogs).

Challenges come and go in daily life and some things you take for granted on a daily basis. Most of my life has been great but I feel I have gone through quite a few challenges and they just keep coming. When it comes to your own child, the love is so great that you could move a mountain. Everyone always tells you that "your life will be forever changed", or "it's a love like no other" but you don't really truly understand until you have a child. Until that little one is in your arms do you truly understand what love is.

Our lives were forever changed on October 7, 2012 when Riley Mae Niedzwicki made an early appearance in this world. Perfect healthly 5 lb 18 inches, all ten toes and finger and a cry that could melt your heart. Once you realize all that is perfect, you can finally breathe right? WRONG! You think the worry is going to stop once the child is here but it is only just beginning.

The days at the hospital were such a blur to me since I had so many emotions going on. They do a bunch of tests on the baby before they discharge everyone to make sure everything is okay with mamma and baby. You really pray everything is okay but you never actually thing there wouldn't be perfect. When a doctor tells you something is wrong, your heart literally breaks.

One of the tests they do on babies is the hearing test. This is a state mandated test to ensure a babies hearing is okay. It is mandatory because they earlier you detect hearing loss, the greater chance of the baby (child) having normal hearing and speech. When the nurse told me that Riley failed the hearing test I was devastated and wanted so me answers quick. Everyone, including doctors and nurses, ensured me that everything should be okay because she was early and most babies fail their hearing test at an early agae. We made an appointment at the ENT specialist to haave a follow up right away. I definitely wanted a piece of mind and couldn't wait much longer to have the follow up.

A couple weeks passed and I really didn't think much into it. My pediatrician said she was alert, growning and doing awesome for her age and weight. The specialist day came and mommy, daddy and baby riley packed up and drove to fort wayne (that is the closest specialist to our small little town). The test took about an hour and Riley was sound asleep the whole time. The want the baby to be asleep for the test and being she was so little, this was not a problem at all. The hooked her up to two wires that were attached to her ear lobes and put a wire in her ear that had the range of pitches.

Around 40 minutes into the test I started to get alittle nervous because the audiologist did not have any positive facial expressions (yes I analyze everything and anything) and I asked her if Riley could hear the pitches and she really didn't give me a complete answer. It was then that I started to panic. I looked at Josh and he could tell that something was wrong.

The audiologist came back with the results.....something no mother would ever want to hear. Riley has severe hearing loss in her left ear and profound in her right ear. Profound is the correct term for "deaf" meaning she has no hearing in the right ear. Every thing after that was a blur, I couldn't tell you what else she was talking about. She asked us if we had any questions....aaaa YES! How did this happen? Will she grown into it? what about speech? Will she have a normal life? Is this something I did to make this happen? The questions were endless.

The reality of it is that Riley will get hearing aids before 3 months old and she will be a candidate for the coclear implants at 12 months (the FDA won't approve it until 12 months). The coclear implants are implanted into your ear through surgery. It is like having a bionic ear and the doctor told us if her having normal speech is our ultimate goal, then the implants are the way to go. So yes, we are going the implant route.

I think part of me is still in shock that this is going on. Ever mother wantst the best for her children and I just pray pray pray that I can give her all the tools she needs to make this challenge into a positive. As a mother that carried her child for 9 months, the guilt was overpowering. Was it something I ate? Could I have prevented this? Was it because she was premature? The reality of it is that God has a plan for our family that is bigger than anyone could imagine. He puts challenges in your life because he knows you can overcome them. Riley is such a gift to our family and I know that she is going to teach us so much more than we can teach her. She has brought so much joy to all the lives she has touched.

There is still a part of me that feels the test were wrong, she can hear me. She looks in my direction, or her eyes get big when I talk to her. We are going to take it day by day and not worry to much about the future. The plan TODAY is to get her in some hearing aids and go from there. I am comitted to learning sign language and working with her everyday with a speech therapist to make sure her speech is as normal as any child. There is nothing we wouldn't do for this little girl. She has filled a void in our lives that I never knew was there.




I love this one...

This is our story of our challenge that lies ahead. It is not something you wish for, or even really thing is going to happen but it does. 1 in every 100 children are born with hearing loss in this country. I am just thankful that they found it when they did and we can move forward.

Have a great Tuesday.

xoxoxo
Shannon

4 comments:

  1. I found your blog through Becky's. Shannon, I love your positive attitude regarding your daughter's hearing loss. I am a strong believer in Romans 8:28--"And we know that in ALL things God works for the good of those who love Him, who have been called according to His purpose." I'm sure there will be times where it will be hard to see the purpose in all of this, but I pray when those times come, you will just hang in there and get through it. Blessings to you and your precious family!

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  2. First off, do not beat yourself up! There is NOTHING you couldhave done to prevent this. Your daughter just got dealt a bad set of cards. And while maybe a doctor will say she's not "perfect" according to his chart. She's perfect in your eyes, and that's all that matters:) Praying for you all!

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  3. Hey Shannon - I'm jumping over from Becky's link up. Your little girl is adorable. I'm sorry that she is having such a hard time, but I know that God created her in His perfect image.

    I follow another blog that you might be interested in. Jen's twins were born waaay early and one of them has severe hearing loss. She got her first cochlear implant a year or so ago and now they are waiting to have her other ear implanted. Here's the link to her blog:

    http://www.ourmicropreemietwins.com/

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  4. Good luck with everything. I'm nervous about Pierce's cardiology appointment in December, and his neurology appt in January. The cardiologist just wants a follow up from seeing him in the NICU and diagnosing him with the pulmonary hypertension, and the neurologist is for possible side effects from his treatment of the pulmonary hypertension...but it's still nerve racking when I think about it. I've convinced myself that everything is ok.

    good luck with everything. My friend has a baby with a genetic disorder and hearing loss, along with other complications (she's 18 months wearing 6month clothes! My 3 month old is as big as her daughter!). She doesn't treat her daughter any differently, because the world won't cut her any slack.
    You're not to blame for any of this. Just keep your head up, one foot in front of the other, one day at a time

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