And unfortunately not so great...Let me preface this post with a link (click here!) that'll help explain some of the lingo & tests. Dec 23rd we took Landon for his 3rd hearing test at UM and he actually cooperated! That was the great part - they were able to do all the tests that were needed, that he didn't cooperate with in the past. :) He usually breathes too loud, is really fidgety and doesn't respond well to the behavioral response test. He fell asleep midway through the appointment, so the audiologist was able to do both the ABR (Auditory Brainstem Response) and OAE (Otoacoustic Emissions) tests. Neither are painful, but require the baby to be still, which has been the problem. These tests can give pretty concrete results so we were really glad to get them done.
Let me back up...in January, all the babies failed the BEARS test (the general newborn hearing test that all babies have before they leave the hospital), they did follow up tests before each was getting ready for discharge and decided to refer all to Audiology for further testing. Once discharged, Brennan & Brooke passed the ABR & OAE with flying colors. Brooke may have mild hearing loss, but is most likely conductive (fixable!). Landon's BEARS test just before discharge, he PASSED! This surprised everyone especially because his Grade IV brain bleed apparently bled through the auditory pathways (as well as vision). We were referred anyway and since the audiologist hadn't been able to get good results from the ABR & OAE, we've been on a hearing test roller coaster. He's such a hard baby to read too! Trying to decipher if he hears you, sees you or senses you when he reacts, sometimes we've been second guessing.
Well, the results...they were able to complete both tests and feel confident that he has moderate-severe hearing loss in both ears. What a blow...he's been doing so well and we really think he hears (maybe he's REALLY good at selective hearing already) that hearing pretty conclusive results was hard. Moderate-severe hearing loss isn't as bad as it sounds from what I've read and been told. The spectrum of hearing loss goes from Mild, Moderate, Severe, then Profound. He's between Moderate & Severe which means we'll need to speak louder and closer to him and he won't hear quieter sounds (and even Brooke & Brennan crying at night - thankfully!). He also got fitted for hearing aids. All the babies have been followed by ENT (Ear, Nose & Throat/Otolaryngology) which will see if there's any conductive hearing loss that can be fixed through medications or tubes. Before ordering Landon's hearing aids, we'll get another ENT consult and fix anything that's fixable before the strong hearing aids. Looking on the bright side, at least they come in lots of colors!
I looked at a couple website and found lists of risk factors for hearing loss...prematurity (check), ventilation (check), antibiotics that have hearing loss side effects (check), hydrocephalus (check), family history of hearing loss (check - I had 40% hearing loss and had tubes in my ears twice...sorry Landon!), many ear infections & high bilirubin (thankfully no to both), 5 out of 7.
At first we were pretty discouraged, thinking how can he really have that bad of hearing loss! He passed other tests! Landon is such a trooper though. Glasses, oxygen, feeding tube, now hearing aids, quite the list of equipment. He (and we!) have the best support that pray for and encourage us, no matter what the next steps are. He's already getting speech therapy to help work on eating (which he's doing great!), now we'll just have to add another component. God didn't bring him/us so far for us to get discouraged. It's just hard that on top of everything else to be concerned of with their development, hearing loss throws another wrench in his therapy. No matter the odds against and challenges before us, we have seen so many miracles and are so thankful for His constant hand over our family!
On the other side of grief
2 years ago
6 comments:
such a positive outlook. little landon is such a trooper! you are all in my prayers!
You all continue to show everyone the faithful family you are...it's amazing to be able to follow you along. Thank you!
Jennie, I'm so sorry for the bad news. I know you are doing your best to look on the bright side ... keep it up! It's hard to do sometimes, but trying to focus on the positive will help you and Nich and the other kids so, so much. You guys are in my prayers.
Praying for you as you take on this new challenge. The wonderful thing about kids that have issues is that they don't know any different. God made them happy and they thrive in their own ways. Praying for you as you adjust to this news
praying for you all. God has brought you thru sooo much! I just thought of this verse: "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze." Isaiah 43:2
I didn't know you had tubes and hearing loss? Crazy!! Poor Landon he was doomed even before he was born with 3 other babies way to soon!
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