So my late late update - Holidays went great , a couple hiccups in the road but eh it happens! The kids had a blast , got way too much stuff as usual and loved it all.. ( I think each present was their favorite as they opened them!) We had the baby home on Dec 29th which was great , although we knew we were facing a whole mess of appointments and follow ups for her.
Her cardiology went wonderful and that is a door we got to shut. Her Audiology - that is another story. Most states now require a newborn hearing screen in the hospital , not a big deal my two oldest kids had it when they were in the hospital both passed with no issues so I honestly though nothing of it this time around - I should have. Lillian didn't pass her newborn screening in the hospital , and they said not to worry alot of preemies do not pass it the first time around , or there could have been too much noise in the room etc etc , so they re-did the test in the hospital and she failed again. So upon discharge the nurses (who were wonderful by the way) reassured me that she would more than likely pass on her follow up since well most babies do with no issues ok great. Meanwhile we get home and something in the back of my mind kept eating at me - the baby never startles to noises , not the dog barking , not the vacuum nothing hmmm well we'll see. Enter our first nightmare of an audiology appointment. We get there and my husband already didn't even like the look of the place , honestly we should have just got back in the car and left then , we go through with the appointment and deal with the rudest medical professional we have EVER dealt with. Once again we leave without a pass , and that was all we were told ( I wont go into the details like the audiologist using the wrong size probe and saying she would see if she could "just get it in there anyway" I think not lady) other than oh yeah come back in 2 weeks and we will test again when her ears are bigger. NO WAY. So I call back up to the NICU and talk to them about somewhere else to be seen , as well as an awesome girl from the state dept of health. We find somewhere else to be seen but the wait it horribly long , or so we thought we ended up getting in much earlier than expected with a last minute cancellation!!!! So we make the drive down hoping for more answers and I gotta say BEST decision we have ever made - the staff was wonderful so was the audiologist , they did the test several times JUST to make sure they were getting the same numbers and sadly they did and she did not pass this time. However this time we were given alot more information , as to what is going on with her hearing (or lack thereof) and we know what is coming next. As it currently sits she is "profoundly deaf" in her left ear and slightly less so in her right - we will have a better idea to the exact severity after the next step in this new journey we are on. So what is coming next? Next we will be going down to UVA ( University of Virginia) for ABR and ASSR testing and after that we should have our definite answers and from there it will be determined if she could possibly have enough hearing to benefit from hearing aides , and if so we should actually be able to have those by mid April! Meanwhile I am finding that ASL classes are few and far between in our local area other than at the colleges but its being looked into and I may have found someone to possibly work out a deal with for some private lessons!!
Luckily my oldest child is one of the smartest people I know and catches on to things very quickly and loves to learn , I think she is going to have a blast learning a "new language" and being as my 4 yr old wants to do everything his big sister does well we are covered. I have had SEVERAL people ask me if I am just absolutely heartbroken or devastated that the baby can not hear- no I am not. Does it suck? Yes. Will it make things more difficult at times? Yes. Does it bother me that my voice from across the room cannot comfort her? Yes. Could things be worse? ABSOLUTELY - she was a preemie , she could have had sooo many serious health problems that she simply did not have. Hell any baby can have serious health problems. So if her being a non-hearing child is the worst we have to go through I consider us to be very very blessed. If anything I am trying to see the positive in the fact that things may not be as bad as we are being told at this point we do still have more testing to go through , and hey if everything has been right so far, ok we get to expose ourselves and our older children to a new language and entirely new culture and community of people and that's not a bad thing at all.
And to answer some question I keep getting alot - YES we do talk to the baby as if she were any other baby , just because she may not hear us or hear us well doesn't change how we would talk to her. NO "it" can not be fixed, her hearing may be assisted with hearing aides possibly or cochlear implants when she is much older ( that will be another post though!) but nope we can do nothing to fix it. GENETICS - are what they think have "cause" this. NO she will not "outgrow" her hearing loss , it would be nice but the chances of that are slim to none closer to none (unless of course all of our testing so far was wrong!)
Now that's all out - I do plan on updating this more often. Just not tonight , tonight I am going to go curl up and watch a movie and try to sleep in 2 1/2 hour blocks while the wee one does until its time to be up for the morning!
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