Nora had an appointment yesterday to have her hearing retested. She failed her initial newborn screening when she was first born. However, since she’s been home we’ve become quite certain that she can hear. She startles at loud noises and responds to all of the silly noises going on around here. We hadn’t been in any great hurry to add more hospital / doctor visits to our already brimming schedule. Now that things have settled down just a bit, we decided to revisit her hearing testing. Today’s tests also came back inconclusive. Her ear canals are so narrow that the devices they use to measure the sound weren’t able to operate properly. There is one other option we can do that measures the response to sound by brain waves. She has to be sleeping for that so we’ll need to reschedule for a sleepy time. Not sure how to keep a baby asleep with buzzers and beeps playing in their ears? We shall see… (and hear).
Tomorrow we meet with Nora’s cardiologist to discuss our options in regard to surgery. Our doctor has spoken with the other doctors we received second opinions from. There seems to be a big difference of opinions and we’re anxious to see if there has been any resolution between all 4. While the thought of sending my infant daughter off on a gurney for open heart surgery scares the absolute hell out of me, not doing something that could potentially save her life scares me worse. Please pray for clarity; that God would guide these doctors down the exact path that would be of benefit to Nora and that we would be at peace with whatever route that is.
Pictures from yesterday:
Trust in the LORD with all your heart;
do not depend on your own understanding. Seek his will in all you do,
and he will show you which path to take.
(Proverbs 3:5-6 NLT)
One of my daughters had that special hearing test done that you write about, and I believe that they gave me a med that made her sleepy–it’s a vague memory since it was about 16 yrs ago..
Nora looks really good in the color yellow!
Will be praying tomorrow so doctors take the right and best decission that benefits Nornor.
Happy belated bday to Joe!!. Love the little dog he holds in the bday pics !!.
Nora is adorable!!!!!! As I was Christmas shopping for my kiddos on the Robeez website..I saw the cutest little pair ever and thought of Miss Nora bc I came across a pair that has 3 little birds =) soooo cute! You should check them out! I also have an AWESOME coupon code to save 50% and free shipping!!!! (but it’s only for today!..i have never saw them that cheap:)) So, that makes the total $12!!! anyway..i’m attaching the link for you! If i were in a more stable financial situation, I would but them for the little cutie myself!!!!!! http://www.robeez.com/product.aspx?DeptID=288&ProductID=1479&PriceCat=2&Lang=EN-US&STID=US
ooopss..here is the coupon code if you’re interested… C52M92B41 =)
I often think back to the day Nornor was born. The time and moments leading up to her birth, and then…her birth. There was so much love in that room and so much strength. Lis, you pulled through that day like you had done it before. You put everything in the hands of The Lord and He did not disappoint. And now look at what we’ve got on our hands…an incredibly sweet baby girl full of gummy grins and excited squeels. I am so thankful for her – and the decision you made. She’s too cute for words and I can’t wait to see her at Christmas! I’ll continue to pray that her doctors provide you with some clear answers on what move to make next.
I love you!
Praying for wisdom, for comfort, for God’s healing hand through the opinions of the drs., for Nora’s hearing and for peaceful hearts for Mommy and Daddy.
I came across your website via facebook, and I have read every month… What an incredible baby girl you have. Nora Rose is just beautiful, and I want you to know that I have been praying for her… and for you and your whole family. As a new stay at home mom myself, I am just so inspired by you and the WAY you care for your family. They are indeed blessed to have you.
Thank you for sharing your story, and for being such a remarkable example to us all. May God bless sweet Nora and your whole family. He will provide!
It seems that your appointments at Children’s are often in the morning so I say a prayer for you all as I drive past the Taft exit on 71 on my way to work. (I bet I am not the only one who does!) Tomorrow morning will be no different! Hoping for clarity and peace!
I love reading about your sweet baby 🙂 I check on you here(and pray for you) every night! You have been a great belessing to me. I just wanted to ask if you noticed that her left pupil looks like a heart in that last picture? How Precious is that!?! Hope you have a great appt width cardiology ❤
I AM SENDING UP LOTS OF PRAYERS FOR NORA, AND ALL HER FAMILY. ALSO FOR THE DOCTORS TO MAKE THE RIGHT DECISION (WHICH I BELIEVE GOD WILL GUIDE THEM TO DO SO.) I PRAY TOMORROW YOU WILL FIND OUT SOMETHING SO YOUR MINDS CAN BE AT EASE. GOD WILL BE RIGHT THERE BESIDE YOU GUYS. I ALSO PRAY THEY CAN DO THE OTHER HEARING TEST SO YOU WILL KNOW FOR SURE ABOUT NORA’S HEARING. THE VIDEOS YOU HAVE MADE IS VERY CONVINCING THAT SHE CAN HEAR PRETTY DARN GOOD!!!! SHE RESPONDS TO YOUR VOICES AND ALL THE OTHER SOUNDS. I WILL BE WAITING TO HEAR WHAT THE CARDIOLOGIST HAVE TO SAY, UNTIL THEN MANY PRAYERS. NORA LOOKS SO PRETTY IN THE LITTLE YELLOW OUTFIT. HOPE AND PRAY YOU ALL GET A GOOD NIGHT’S SLEEP, AND HAVE A GOOD DAY TOMORROW. I LOVE YOU ALL. GOOD NIGHT AND GOD BLESS.
I will pray for you and Nora!! I know what it is like to send a child on a gurney into heart surgery. *hugs*
I’ve never commented before on your blog before but your post today hit home with my family. I look forward to your posts of sweet Nora and pray for her and your family! I felt I should share with you our experiences in the hearing area. Our now 4 year old daughter failed her newborn screening test as well in only 1 ear. After we had it tested when she was 6 weeks old they referred us to Dayton Children’s for a hearing test. She too had a narrow canal and they had to resort to the test while she slept. I wondered how that would work but amazingly my daughter slept through the entire test. I pray Nora too will sleep through it! They also did a CT scan to make sure the inner ear was structured correctly. Everything came back that she just had a narrow ear canal but it restricted her hearing. Eventually we were referred on to Cincinnati Children’s to Dr. Choo (we see him at the Mason branch). He has been a great doctor for the past 3 years and my daughter really likes him and is comfortable around him….if you need a recommendation. It is a 2 hr hike for us to Cincinnati but we feel it is well worth it for the care we get there. I pray that you soon get clarity in regards to Nora’s heart and ears. Keep all the sweet pictures coming. I love seeing your kids’ smiling faces:)
In that last picture, Nora looks like she is slipping into a “Baff-induced coma!” I love that you ahve found just the perfect thing to calm her down! Many prayers your way!
We have a bit of knowledge in the hearing arena with Aden being profoundly deaf. If you have any questions about anything let us know! I see the Drs are talking about doing a “sedated” ABR (the child can be asleep or given a liquid med to sleep because they need to be perfectly still for the test). Aden did one sleeping and one with the meds. For some reason our audiologist only tested one frequency and one dB level on the first ABR so we had to do a second one that tested multiple frequencies and multiple dB levels. They put sticky electrodes on the head and tubes in the ears. The test sounds like a big deal if they talk about sedation and all but it’s easy peasy – she’ll be a rockstar! Hearing is such a complicated thing. So many things affect your hearing like narrow canals, fluid in the ears, structural issues, nerve damage (Aden has sensorineural loss).. and it can be hard to pin point when they’re so little. And yeah, if she’s startling I think that’s the least of your worries 🙂
It is really sad when a baby doesn’t have good hearing. The hearing tests are so necessary. In Saint John, NB, they have problems with children not being able to hear. Keep up the great posts.