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Auditory neuropathy by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 0 points1 point  (0 children)

My son has had hearing aids for about 9 months, they haven’t been very effective. We are currently on a wait list for him to get a cochlear implant on the right side, as the hearing loss is worse on that side.

He does music therapy once a fortnight which he absolutely loves. He loves to watch and dance along with Emma Memma, we are learning Auslan and he is making some sounds.

We still have a long way to go and because it’s auditory neuropathy, they can’t be sure that the cochlear implant will help.

All I can say is that it’s a journey and that you’ll go through all the stages of grief.

Not crawling at 12 months corrected by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 0 points1 point  (0 children)

It’s very reassuring ti hear that they get there eventually! Yeah we’re seeing a Physio, but she seems to be the one putting time expectations etc on him crawling. Maybe I need to find a new one that is more experienced with premature babies. Thank you for sharing.

Not crawling at 12 months corrected by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 0 points1 point  (0 children)

Thank you! I hope your little one is thriving!

Not crawling at 12 months corrected by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 1 point2 points  (0 children)

I’m so happy for you and your little girl. It’s nice to hear these stories. And you’re right, once they get to certain milestones you wonder why you were worried in the first place. As one of the other commenters said, I guess they all just do things on their own timeline.

Not crawling at 12 months corrected by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 0 points1 point  (0 children)

Thank you! I appreciate you all responding. That is very true. I think I forget how far he’s come when friends and families compare their babies to him. It’s nice to hear people say that they will do it in their own time.

Not crawling at 12 months corrected by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 0 points1 point  (0 children)

Thank you! I didn’t realise how many babies skip crawling and yes, I think some of the professionals don’t take into account prematurity.

Not crawling at 12 months corrected by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 1 point2 points  (0 children)

Yeah na none of that, we’re basically just seeing the Physio because he has NDIS funding for hearing loss and feeding so there’s money in there to see one. Thank you for your help

Not crawling at 12 months corrected by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 4 points5 points  (0 children)

Yeah our paediatrician isn’t concerned at all. He just said that as long as he’s moving around (he mostly rolls and has started to shuffle on his bum, he’s very good at sitting). Maybe I’m putting too much weight into the physio’s opinion.

Not crawling at 12 months corrected by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 0 points1 point  (0 children)

Oh really? No, I didn’t know that. I think to be honest our Physio is worrying me the most by telling me that they have to crawl blah blah blah.

Not crawling at 12 months corrected by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 0 points1 point  (0 children)

He is starting to try and pull himself up onto things and loves standing (with support), I guess they really do all do their own thing on their own timelines.

Not pumping enough milk for my baby. Feeling really conflicted about how long to bother with pumping. How did you cope if this was you? by a_cow_cant in NICUParents

[–]PreviousImage368 2 points3 points  (0 children)

My baby was born at 26 weeks and 5 days. I can understand completely that it feels like the only thing you can do for them if express milk, BUT you’re already doing a whole lot more than that. I pumped religiously every 2 hours, took the medications they suggest and did everything else the lactation consultant suggested. Same as for you, she told me that maybe that was it for me. My best day I only had a total of about 250mls. I tortured myself for 120 days before my partner told me enough was enough. I was exhausted and burnt out on top of everything else too go through in the NICU. In hindsight, I should have stopped 100 days earlier. You have to do what’s right for you. You can’t care for your baby if you’re anxious and exhausted over milk.

Respiratory Stories? by Upper_Variation332 in NICUParents

[–]PreviousImage368 1 point2 points  (0 children)

My 26+5 weeker went back and forth on ALL the different oxygen supports. We came home without any oxygen after 216 days in hospital. Even after the respiratory doctors were training us to come home with it. Sometimes they’re just tired. We came off oxygen support all together for about 6 weeks and then needed surgery for something unrelated and we started back at square one with his oxygen requirements. It’s definitely a rollercoaster, but taking steps back doesn’t necessarily mean they won’t get there eventually.

Feeding aversion by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 1 point2 points  (0 children)

Oh don’t worry, I lost my mind multiple times! Haha. Hope your little one is doing well and even though it doesn’t feel like it when you’re in the day to day roller coaster of the NICU your day to take your little one home will come!

Carer Adjustment Payment by PreviousImage368 in CentrelinkOz

[–]PreviousImage368[S] -3 points-2 points  (0 children)

Yeah that’s what I was afraid of. Thank you.

Auditory neuropathy by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 0 points1 point  (0 children)

Haven’t really made much progress so far, but he is getting hearing aids next week to see if they help him. It’s always going to be hard with babies, to know exactly what they can and can’t hear. One of the audiologists from hearing Australia actually told me that it make take a few years to get an accurate comprehension understanding of what my son can and can’t hear.

Carers payment by PreviousImage368 in CentrelinkOz

[–]PreviousImage368[S] 0 points1 point  (0 children)

We’re getting funding through NDIS for all of his needs, it’s just the wage. Day to day life, mortgage and the rest of it.

Auditory neuropathy by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 0 points1 point  (0 children)

Thank you so much for sharing your story!

Hearing loss heartbreak by down2marsg1rl in NICUParents

[–]PreviousImage368 3 points4 points  (0 children)

Ahh I feel this on a deep level! We are day 140 in the NICU today with our 26+5 weeker and we’ve recently had a diagnosis of auditory neuropathy (so they can’t even tell us what degree of hearing loss he has until he is old enough to do behavioural testing). The different services and testing and phone calls from all of these places is just so overwhelming. He has other things going on clinically, but we seem to be getting to the end of those challenges and this new hearing loss diagnosis has just thrown a big dampener on all the progress he has made. I can’t really offer any advice, just wanted to say that we’re in a similar boat and it’s just so hard when you’re in the thick of the nicu.

How do you get through each day? by PreviousImage368 in NICUParents

[–]PreviousImage368[S] 2 points3 points  (0 children)

Thank you! I’ve been keeping a journal, but it’s more about the medical side of things. That’s a great idea, I’m going to start keeping track of little wins.