One of "those moms"

I have to admit that I am doing something as a mom that I thought I would never do. Not just before I became a mom, but even up until even as recently as a month ago.

What is it?

I never never thought I'd put a "leash" on my kids, and yes I called it a leash.

Even with strong resistant Rhys I could control the safeness of a walk. There was a few times I would have to grab him up into my arms but by the age of three he was constantly safe not to because he knew not to.

With the girls, I thought I had two hands and if I had three of the kids Rhys is responsible enough to help.

So what has changed?

Miss Gwen

who me???

Gwen is a runner, and unlike her older brother, in a loud parking lot she can't hear me. She won't keep her hearing aids in a parking lot and can't wear them in the van so they come out before she goes outside. I had a day picking up Rhys with the girls were Gwen bolted on the road. I didn't have enough arms to run after her with Avery or the speed with Avery in my arms.

It was the scariest thing to happen since they came home from the NICU.

I still wished to teach Gwen safety instead of relying on a leash. But no matter how many times we tried she will bolt with no warning.

As a mom, it is terrifying. My child can't hear me, she can't detect were all the traffic sounds are coming from, and due to this tendency to run she is at a major risk.

So what to do, even with the knowledge of the backpack harnesses I couldn't bring myself to do it. It took the panic of almost loosing her and talking about my fears with other moms.

Gwen's SLP summed it up the best- you've done so much to give her the best in life and fought for her, give her this extra protection until she can trust herself in a parking lot.

Got her a little pink backpack and she loves going around with it,today was the first time we used the harness part. She was a good girl and held my hand the whole walk into audiology she had a harder time going back to the van but she was getting tired.

"Avery ook my ears!"

It was such a relief  that I could let her walk and that she could do it safely.

Yet I still got looks.

People who like me thought that its a crutch, maybe they thought I was lazy. I too had the reservations of using them. But you know what? Gwen was safe, independent and I didn't loose her to a preventable accident.

So judge away, but my baby is safe.

power outages, appointments and major talks

Happy New Year!

I mentioned before that I've started a new job, lost the van in a minor accident (no injuries and just me in it), got a new job, had 4/5 of our birthdays (plus 3/4 of the grandparents) all in the last month and a half.

Love the job, its only part-time only 8-24 hours a week but it works around Matthew which is important with two two year-old  preemies who still have tons of appointments. I'm working in a portrait studio, doing something I love. 

Avery

 

Gwen

Christmas, and birthdays were busy busy busy! And the adjustment to working alongside parenting three kids is well underway, I think the adjustment to not seeing Matthew as much was harder. But now he gets to take the girls to appointments by himself too and is understanding firsthand the girls issues.

In the last 4ish days, I've lost count, we have been experiencing rolling power outages and full on power outages. Our work was without power for most of the time, but we still were there. The kids have done okay with the power being gone, Rhys is hitting the point of "why is it gone again" but he is dealing. 

School has a delayed opening until at least Wednesday, so he is excited. 

Gwen had another Speech Language appointment today, it went ahead because the hospital has power. She is booked for once a week the next four weeks. 

At the end, it was mentioned that we are gearing up as parents and all of her "team", speech language, audiology, audio visual, and itinerant teacher to get together to decide if her hearing aids are enough or if we will have to go the cochlear implant route. Its hard to keep hearing that regardless we still have to talk about it, but the reality is is Gwen getting enough language right now? I believe she is, she understands what we say to her but I also appreciate that she doesn't verbalize as much as her sister (or her brother did) 

Its going to be a tough discussion, and a tougher decision.

Speech Language

Dear Gwen, sweet dear Gwen.

I can say 80% of my gray hairs have come from worrying about you,. Not to say your siblings haven't given me a few, Avery & Rhys' two surgeries where no walk in the park. Avery gave me many frights during her NICU stay. But I don't think I have ever stopped fully worrying about you on a major level. You with your hearing, with your language stills, with the unknown.

Will we have to make the unthinkable choice to go with CI's?

I don't know.

And the unknown is a lot more frightening then certainties, AN is such an unknown.

I thought you were doing well.

I thought that you were talking up a storm. Not as much as Avery, but she doesn't need hearing aids.

But after speech language today, I got the impression that your doctors are more concerned then they are telling me.

So now what?

We have to wait and see, and try to give up on worries. You are happy, healthy and know no different.

And isn't that all that matters? That you are happy?

Hopefully now we will have a lot more answers now that you have started SL, but as always its hard to tell with you.  But it is a start and we will get more answers. 

broken record and some possible interesting news

I know I know, I'm busy.

Matthew had a week off so we fled to the southern shore to stay at his nanny's house after the girls cardio appointment.

So first the cardio appointment. It went really well, Gwen's pressures were fine so she got discharged.

Avery's blood pressure is perfect again so... she is off of meds officially and discharged from cardio too!!!!!

look how serene I am now that I have low/normal blood pressure 

Now she has a follow-up with Nephrology in September and her Nephrologist has the last say over her blood presser but it makes me hopeful. 

After their late (holy molly 3pm appointment that didn't start until 3:30pm) we headed off to Matthew's nanny's house. Rhys and the mother-in-law headed up with Matthew's aunt & nanny. While Matthew, the girls and I headed up in our rig. We got there after 7 so we tried to get set up to get the girls to bed. 

All three loved spending most of their time outside, Matthew loved spending time with the kids where he has some of his most favorite childhood memories. 

Matthew took these playing with the kids 

Rhys up a tree that Matthew climbed many times 

the girls playing hid and seek 

Avery enjoying the yard 

Gwen running around 

I loved spending more time with Matthew's family. Most of his aunts showed up for short visits during our time there due to the community one over having their come home year that week. It was also during Lady Day and they are from a good Irish Roman Catholic community with its own grotto so a big influx of visitors during our stay. 

grotto

Rhys running around before the service 

the girls waiting for it to start

Because of how devout some of Matthew's relatives are there were week long candles lit for the girls for at least as long as they were in the hospital (I know they were longer then that, but I can't remember how long) and so a bunch of the people there stopped me telling me that they prayed for the girls and how happy they were to see them now. 

Loved spending time with the family, and getting out of the city. 

So now we have a break until sometime mid September before there is another doctors appointment, and I'm glad for the break. 

Rhys starts up school in only a few weeks, were did the time go??? Still waiting to hear about what session he is in be it mornings or afternoons. But regardless he is all ready, all the school supplies are bought and ready to go! 

Also, I wanted to let you guys know that I might be doing a guest blog for someone that I have been following for a few years during her TTC journey. I will let you know more when I hear it but it is exciting to think about. I will keep you posted! 

18 month appointment & sadness

The girls had their 18 month needles today, and having to talk about all the doctors and health issues is I have to admit depressing.

They have come so far, but having to relive everything that has happened in the last 6-12 months...

June 2012

We are getting close to Gwen's 1 year diagnoses for ANSD. The more I think about AN, the sadder I get recently. I just wish I knew she was going to do well with her HA. Just wish she would develop language well enough, and hear well enough to be the best she can be. 

Gwen - July 2013

I also worry about Avery's paralyzed vocal cord, and people not understanding them. The girls are still random stopped, and they get looks. Avery always gets looks when she gets excited in talking. 

Avery - July 2013

I don't want people looking at them, signaling them out. I know it already happens with the fact that they are twins. But I wish that they wouldn't look because of Gwen's HA, or the looks when Avery talks. 

They are fine.

Avery - July 2013

They are both dealing with disabilities.

Gwen - July 2013

But I refuse to treat them as disabled. 

Avery - July 2013

But I can still be sad.

I will still have days that I blame myself. 

I know it isn't logical, and I know that I didn't do this to them. I know that the alternative to it all is worse. 

If Avery didn't have her PDA surgery when she did, she would have bleed out into her lungs and died. Simple as that. We couldn't have waited for her to be bigger, to wait for the space to be bigger, and for it to be less likely for the nerve to be damaged. 

Avery - Jan 2012

If Gwen wasn't put on a ventilator, she would have died too. We almost lost her several times, too many times to count and we would have if she wasn't ventilated. It damaged her hearing. Her early delivery, low birth weight, jaundice, antibiotic use all damaged her auditory nerve and were all because of being born early. 

Gwen - Jan 2012

These are the realities of the girls. I have to deal with this, somehow. And I will. 

It's just taking sometime.

Earrings & Ear Piercings

So I have been debating getting the girls ears pierced since I found out I was pregnant with girls. Both my mom and MIL have voiced concerns about getting them done to young. Telling me horror stories about babies with bad infections in their ears/neck.

Yes my MIL was a nurse, and saw all those kids who this happened to. So its understandable that she is concerned, my mom also heard from other parents about this happening. That is why I didn't get my ears pierced until I was 5.

5 year old me, don't judge it was the 80's

I know I want to get their ears pierced.

I know that there are pros and cons to getting it done young.

But I also now have the added unknown with Gwen's HA. Every time I search online if she can get her ears pierced I get conflicting responses. I would just want to know if its possible, and if it is if she can't wear her HAs while they are healing. Both of those will effect when we will get them done. I don't think it would be an issue her receiver doesn't go near her lobe, but I'm still curious.

Miss G making the ear piercing decision hard 

Matthew is for getting them pierced, but thinks they need to be 2 or 3 before we do. I'm fine with that. He gets as much say as me. I'm also fine with waiting until they are 5 like I was. It might be a nice thing to do on their 5th birthday, I still remember getting mine done then. But then again, was it on my birthday??? With being born in December, I doubt that my parents would subject themselves to trying to keep earrings in during the winter.


The other thing is, could/should I get Avery's ears pierced at a different time then Gwen? I know that if for some reason Gwen can't get her ears pierced then I can't say no to Avery. But if for some reason we just need to wait for a certain age for Gwen to get the done to help her better, should I wait for that age for Avery too? Or would it just be easier to do the ear care separate?

Avery doesn't seem to have any issues preventing her ear piercing 

So many things to think about....

Any mom's out there who got their little girls ears pierced?

Any with HAs?

What would you do?

sleep

Gwen has been fighting naps recently. So guess who just slept through her last itinerant teacher appointment until September?

Gwen showing off 

This girl. 

Oh well, she was happy to see Avery, met Rhys for the first time and talk over what the plan for the summer was. 

And Gwen slept.

I guess its the positive for her having those appointments at home...

Auditory Neuropathy Part 2

Miss Gwen had AVT (audio verbal therapy)  today and she was made to work hard, so much so she passed out before I left the parking space at the hospital. We have homework, she has to be encouraged to verbally respond when its her turn to verbally engage us.

Gwen using her shirt as a crumb catcher 

So lots of repeating games and sounds and correcting her.

I'm getting tired just thinking about it, but you got to do what you got to for your kids. We know the HA are helping, we just need to push her language development and try to get her to catch up and stay on par with other kids her age.

Gwen blowing kisses 

Things can never be easy for the girls can they?

Can't have a pity party, they are doing well, they are alive. But some days, scratch that, most days I wish things were easier for them- different. Poor Gwen doesn't know any better, but I do. No child should have to fight to live, breath, grow, learn. After living through something like this, you never ever take the simple things for granted.

She is developing language skills, she is a happy energetic little girl. Most kids with ANSD don't like to engage people. Most of them like to keep to themselves and not try to engage others, living in their own little world.

Gwen going to her appointment today

Not Gwen.

Gwen loves to be involved with everything. Gwen loves to babel back, sing, clap, dance, and smile. Oh how she loves to smile.

Gwen's first time in the little people chair 

How would things be different for Gwen without ANSD?

Would she be as talkative as Avery and as Rhys was at their age?

Would she feel outnumbered, her voice lost in the commotion of my concern over Rhys being the eldest and only boy or Avery's blood pressure and paralyzed vocal cord?

I doubt it.

Gwen is Gwen and I can't live in the "what ifs". Gwen has ANSD, and needs HA. Hopefully that is all she will need, we shouldn't be concerned that she needs the help. We should be happy that she is getting the help that she needs and that we might be able to avoid surgery and CI's. But if we need to go that route, I know that she will be given the best care possible, and we will work so hard to help her in her journey to language and hearing.

Happy HAed Gwen during breakfast 

legally deaf not deaf

why is it so hard to understand?

Rhys had an appointment with the dentist last Thursday, and he had a quick look at the girls. Matthew was in the room, while I stayed out with the other two. He was being asked about each girls medical histories and Matthew told him that Gwen was deaf.

No she isn't.

does this child look like she can't hear?

Gwen isn't deaf.

or this?

She is legally deaf.

silly girl

If she didn't have AN she wouldn't be considered deaf with her hearing thresholds.

Maybe that is why daddy is having such a hard time putting in the hearing aids, maybe he thought they wouldn't help because she was deaf? Hope now that that point has cleared up, he will keep her HA in more often

hard for mama to get a pic of the HA because I'm usually making sure they stay in

MRI

Just got the call Gwen will be getting her MRI this Friday. Mama's a nervous wreck because of the sedation but I know she will be fine.

How do you other mama's deal with sedation?

You think I would be an old pro now given the fact that her brother and sister have had surgeries, and that Gwen was mildly sedated during her first few days on the oscillator. But this feels different for some reason, maybe because she is healthy. Both her siblings surgeries were as safe as surgeries could be, Avery was ill and needed it, Rhys was in pain and needed it. Gwen was extremely ill when sedated before. 

Neurology, hugs, and little NICU friends

Gwen had her neurology appointment yesterday, 3 hours at an appointment is long with a tired little girl. But she did well. Her neurologist was an awesome, sweet, soft spoken, kind man who Gwen loved from the moment he walked in the door! I honestly have to say that having a wonderful doctor can make any appointment so so much better. Even though she was an hour past nap time, Gwen gave him her sweetest smiles and laughter when she got to play with him (I mean who gets to play to diagnose??)

It was decided that she will need to have a MRI. Which means she will have to be sedated for it... Mama isn't looking forward to that, but its better that we know if her ANSD has a physical cause then to guess.

Happily, her neurologist truly believes that she doesn't have any neurological issues (other then the neuropathy) due to her not showing any symptoms of other issues.

early morning riser up for her appointment 

Other then that, missing a lot of people right now. Those living away, or just not seeing them due to life. A lot of people I just wish I could hug right now... I wish the weather was better and Spring would actually come and cold a flu season would be over so all of our NICU friends would be safe again. Thinking of one little man who is back in the hospital, and hoping that he gets discharged tomorrow like his mama is hoping. 

itinerant teacher

Just got a call from Gwen's itinerant teacher, she will start some time in April. Not sure yet what they will do due to her age, but we can get started.

Also, Gwen has been more and more of a drama queen when it comes to doing what Avery can. Avery has always been further along in crawling, standing, and trying to walk. So Gwen has been getting mad when she can't do what Avery is and has been standing up to things and screaming because she starts to do the splits because she is too tall and her legs aren't strong enough yet. Today she found that the bouncer is tall enough to stand tall to and was happy!

Gwen standing up

Gwen bending down and not screaming 

New words

Gwen has been talking more and more since she got her hearing aids, the last two days were hard to get them in because she has a head cold but that hasn't stopped her language development.

New word list since HA (4 weeks):
1) Hi
2) ball
3) Mama/mom/mommy
4) poop (yeah poop...)
5) dada/dad
6) yum

Silly Gwen

Auditory Neuropathy

This is a bit confusing post just because auditory neuropathy is a confusing condition. No one should feel as confused about a diagnoses as parents of Neuropics do.

smiley Gwen

Before leaving the NICU both girls had to have ABR hearing screening, Avery passed with flying colours but Gwen got a "need to be retested" 

After a few months of ABR's when she kept waking, we knew she had a hearing issue which seemed odd. 

Gwen is bright, interactive, trying to talk, responds to sounds, and if you met her you would never think she has a form of deafness. Eventually she was diagnosed with Auditory Neuropathy, a hard day for sure because of how AN (or ANSD) behaves. A regular hearing loss is something that can be found out early, and most audiologists know how to work with it to choose hearing aids (HA) or cochlear implants (CI). But with AN you can't "tell" what they are hearing until they are older.

Wait, that is more confusing... 

A mother on the facebook group explained it this way: 

"ANSD is a type of hearing disorder that affects how the rate and consistency of the firing of nerve impulses from 1) the inner hair cells to the VIIIth (auditory nerve) when they are stimulated (one example of the site of lesion being at the location of the synapse between the inner hair cells and the VIIIth nerve)(cochlear implants would be effective in this case)
or 2) the way the "fired impulses" is travelled from one neuron cell to the next along the auditory pathway to the auditory cortex of the brain (the second example of the site of lesion being anywhere along the VIIIth/auditory nerve all the way up to the auditory cortex)(cochlear implants would not be effective in this case). 

It is the inner hair cells that need to be stimulated (or sheared by the tectorial membrane via outer hair cells for soft sounds, or touched or moved by the fluid inside the cochlea for loud sounds) in order for "neural impulses/firing" to be sent to the auditory nerve (VIIIth) which leads up to the auditory cortex of the brain. 

The neural impulses from the inner hair cells have to: a) fire at a synchronous rate (in a consistent pattern that is consistent) and b) travel uninterrupted up the auditory pathways to the brain to be received as "clear and good sound perception." 

We were also lucky that Gwen's seems to be consistent, and that hearing aids seem to be all she needs at present. She has gotten a new word a week since getting them. She is even babbling differently. She spent the first two weeks with her loner purple aids waiting on her baby pink ones to come in, and I've realized I haven't taken a pic yet of her in them. 

Gwen playing with her loner HA

Gwen with her loner HA

We don't know what is in store for Gwen with her ANSD, but we will take it as we go