hearing loss + tubes | lila update

good morning, my friend!! i hope you’re started this week feeling refreshed and ready to conquer the world! and if not…well, we can commiserate in a constant state of being tired, so let’s cheers with some coffee??

have you seen this floating around Facebook? ha! i’m getting to the point now {at a mere 19 weeks} that this bump is big enough to get in the way and has started getting uncomfortable, i’m just tossing and turning through the night… add in random sleep problems with the girls and.. sheeesh. good thing there’s still coffee!!

we had a really fun weekend with a great mixture of plans and downtime.. absolutely just what we needed!
movie night, parks, pictures, church, birthday celebrations, darts, baby snuggles, hikes and play time. it was an all around great weekend!!

it’s been awhile since i’ve updated about my little ladies and while i literally could post about their crazies every single week with all of their new happenings, i do think it’s time to do a little updating!! my big girls have SO much going on and there have been so many updates, i figured i’d save your eyes and break it into two!! and plus, it’s fun to get some one on one time every once in awhile! 🙂

so my sweet, little lila bean.

lila is our busy body, into everything, the tornado of the two. she loves life with every ounce of that adorable toddler belly and thinks she’s the funniest person she knows {and i give her credit, she’s pretty hilarious}. she has us rolling on the floor with all of her goofy antics and has the best belly laugh you have ever heard.

she’s always been a tough cookie that i swear was developed from her nicu days but is also the best snuggler and will sneak up for surprise lovies, just because.

somewhere around her first birthday, i started having some concerns about her speech.  while ducky’s language was sky rocketing and she loved to babble, lila rarely ever babbled and her vocal imitations were pretty limited. i found myself pulling out data sheets, sound charts, and having mini sessions throughout the day when we finally decided it was time to search for some answers.

the girls were both receiving services from the state funded program for early intervention, so we decided to have a speech and language pathologist hop on board. there were enough concerns that her expressive language was falling behind, she recommended that we rule out anything medical before pursuing further therapy.  we needed to check her hearing as a first step, and while i thought she could hear fine, it was the right call to rule that out. she had passed her hearing test in NICU, so i really thought it would be an easy in and out and we’d move on..

first hearing test

lila’s first hearing test was in june 2016 and went drastically different than i anticipated. the very first thing the audiologist does is put a device in her ear to measure fluid… turned out her right ear had A LOT and her left ear had a bit too. she asked about ear infections and since lila had never had one, it seemed pretty confusing to me. we went through with the rest of the evaluation and without going into all of the technicalities, she didn’t do fantastic. the audiologist explained that it wasn’t surprising she didn’t do great since she had fluid on her ears, so we would recheck in a couple months and surely it would be fine.

throughout the summer, zach and i started noticing sounds that lila had once had, she was losing.
she was regressing.
at their 18 month follow-up, lila tested at a 9-12 month old in her expressive language which was beyond disheartening.  i knew something was wrong and it was time to figure it out.  we scheduled immediately following this appointment.

second hearing test

we quickly got in for a second hearing test and while i wasn’t totally shocked to get the results, i was pretty heartbroken. they tested her fluid again and there was even more than the first time.  we went into the soundbox and as lila was sitting on my lap, they were making sounds in different areas of the room.  when lila acknowledged the sounds by looking or searching in the right area, a stuffed animal would play music. i was amazed that sitting there, sounds would play and she couldn’t hear them. at all. i felt like a terrible mother. how could i have let her go months without hearing.
the amazing news was that when they put a device in that bypassed the fluid, she could hear fine. praise god. apparently chronic fluid can cause permanent damage to the bone structures and therefore permanent hearing loss.
we walked out with a referral to an ENT specialist and a report that read: ‘significant hearing loss’. the audiologist recommended we be as aggressive with ‘treatment’ as we possibly could with weekly private speech therapy, monthly speech therapy through early intervention and then tubes to clear the fluid.

ear nose and throat {ent}

we got in shockingly quick to a highly recommended doc who was fantastic with kids.  i was halfway expecting to have to fight to get tubes since she had never had an ear infection, but the first words out of his mouth when he walked in the room was, ‘well, the hearing test didn’t go well, did it?’. i instantly felt relief because he acknowledged my main concern within seconds.  he was great with lila and we quickly discussed that if i was totally against getting tubes, he would entertain the idea of being on antibiotics for a month before it wouldn’t be a choice. she needed tubes and i was most certainly wanting to help her in any way possible. we set the date, discussed the procedure and i knew it would be much harder on me than it would be for her. while there, he made note that her tonsils were ginormous {mama genes} and those would probably be needing addressed at some point.  the final note was that we would most likely be looking at a new set of tubes every 1-1.5 years until she was 5 or 6… anything to help her hear!!

tubes

just after the new year, we swept up our sleeping beauty and her blankies (sis was at grammies) about 5am to head to children’s. we got checked in and our little snuggle bug clung tight while we went through pre-op. i have to say little toddlers in gowns is quite possibly the cutest little thing in the world.  we loved loved loved our nurses and they were SO sweet with our baby.
i was honestly a hot mess going in because all i could think about was my teeny little 3lb. baby, with an IV in her head and a collapsed lung, that we couldn’t talk to or touch. it broke my heart, but when the time came and they walked me through everything, i really was proud at how well i held it together! i think the fact that they didn’t do an iv helped…

anyways, hundreds of pink zoomy car rides with daddy through the halls later….she checks out and she’s ready for surgery.  they give her a sedative to relax her and she starts to conk out.  she was absolutely hilariously determined to get down and walk, which she wasn’t allowed to do, but she pretty quickly would give up and rest in our arms…only seconds later to try again. i absolutely soaked up all the snuggles.
it was finally time for her to go back, so we placed her in her bed and they wheeled her away.  the meds worked because there wasn’t any screaming (thank God).

i snuck out to the waiting room because i was starting to get nauseous from not eating, so i was attempting to shove peanut butter crackers down my throat. i had probably gotten 2 in when zach’s calling me that she’s back already. i knew it would be fast but holy moly!
the doc said she did amazing {i knew she would!!}, and it was easy peasy. he did note that there was a ton of fluid in her hears but it was really easy without complications. our sleeping little lila bean would be back in 15 minutes from post-op in no time. i walk in to see our baby snuggled in daddy’s arms with some juice and a new purple puppy.
absolutely. hilarious.

this girl.
trying to give her pup pup lovies but she couldn’t quite get his nose. i couldn’t stop laughing. she finally wanted her mama and we snuggled and snuggled until it was time for discharge.
we were in and out and headed home in a matter of 4 hours and home before 10am!
poor babe did great until the ride home. i think she had too much juice because she got pretty sick on the way home {she gets it from her grammie}.
once home, we rested, snuggled, and slowly reintroduced juice and some food.  after nap time she was a little more fussy but pretty much back to herself before bed time!

update since tubes

 we noticed an immediate difference in lila’s hearing the very next day.  she was pretty sensitive to loud noises, like the dogs barking and now needs reminders it is time to go to sleep rather than having chatty parties with sis each night.

toddler speech therapy

she’s still in weekly speech therapy but her speech has significantly improved in the 3 short weeks it’s been since surgery. the doc promised it would be a fast change, but i honestly can’t believe what a huge difference it has made.  she looks at my mouth now when i’m prompting her to say something more clearer like ‘oh, that’s what you want me to say?!’ only to say it with much closer approximations.
she has absolutely amazed me and while she still has to make her mouth work a little harder, she’s coming along amazingly.
last wednesday we went in for a tube check and an updated hearing test and oh. my. gosh. she tested within normal limits… her hearing was completely normal.
i couldn’t even believe it. it didn’t shock me since we had seen such a difference, i just couldn’t believe that it was that simple of a fix.

i have always been such an advocate for early intervention, but watching the effectiveness with my own kiddos has been a whole new world.
i feel so blessed to have worked with such an incredible medical team since the girls were born..they’ll never know how much they are truly appreciated. from each nicu nurse, pediatrician, and therapist… they’re truly amazing amazing people.

i couldn’t be happier to be typing up this update before throwing the girls into the car to head to….speech of course!!

question: did you have tubes as a child or have you experienced this with your own children??

xoxo,

lindsey

Sharing is caring...Share on FacebookPin on PinterestTweet about this on TwitterShare on StumbleUponShare on LinkedInShare on Google+Email this to someoneShare on RedditShare on Tumblr

9 thoughts on “hearing loss + tubes | lila update

  1. Tubes were amazing for my daughter. Even bow at 13 she still has fluid problems but they don’t think tubes will help at her age. It is amazing how quickly they can catch up.

    1. Oh wow, thanks for sharing!! Does she have hearing loss from the fluid or does it not seem to bother her? It really is amazing how resilient they are!!

  2. Yay that’s great news! Just curious, I’ve noticed many moms don’t want tubes. Is there a reason for there being such a strong feeling against them? Is it just the procedure that is scary or are there other reasons for not wanting them?

  3. I havent experienced this with my own kids but it is really interesting to hear your story. It’s so good to hear you can already see an improvement in your daughters speech. Can’t wait for the next update x

    Amina xx | http://www.AliandHer.com

  4. Aw such a lovely story, I’m so glad the tubes have helped her. My niece had speech problems when she was a baby but it didn’t have anything to do with her hearing luckily. Really hope it works for her xx

Leave a Reply