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. 

For all things there is a season

Life is busy, but would I have it any other way? Nope.

A lot has happened, and we are trying to settle into the new normal.

I went to the all day scrabooking fundraiser for the Sunshine Foundation . It was a great day, and I got 14 pages done in Gwen's book. I would take picks of them (and will later) but due to the camera incident I'm currently looking for my old SD card. During the fundraiser, I won not only the door prize but also one for making so many pages. It was great to get out for the day and just create. It was also great that I was able to do so for such a great cause and met a bunch of parents of much older NICU grads.

one cell pic of a double page layout I did

Gwen has gone back to audiology at the end of September. Her hearing is the same in the right and a little better in her left ear. They made casts for new earmolds, and we talked about her starting up speech language. After both girls going on the wait-list back in April 2012, we finally had appointment times for this week (Gwen's was supposed to be Monday & Avery's Wednesday) Both the audiologist and her AVT therapist were excited to get in touch and plan with the SL.

I also got the go ahead from them for getting Gwen's ears pierced, in fact they believe that it is the perfect time to do so, from their end. So now we just are trying to decide if we will get it done this coming weekend, or to wait until the Spring. Matthew and I have talked over the pros and cons, and both Nan's have been informed with expected results. The two main reasons why I think we might wait until Spring is because they need to stay in for so long and we have very cold winters not comfortable with earrings in, and because the girls are already at a high risk for illness why risk an infection on top of all the other bugs they will be fighting? We just want to both be well informed, but at the same time, we know that we can care for them properly and that we want them to get their ears done. I guess there is never the perfect time to do so.

Avery was to Physio and is expected to do fine, we just have to encourage her not to take both hands from people when walking. She was to speech language yesterday, and the SLT is very impressed with her vocab and her language comprehension. That is once she warmed up to the SLT. In the appointment we worked it out that her paralyzed vocal cord is in the worst position for speech. That we can't do much until she is older that we can tell her how to regulate her airflow to project her voice without straining her right vocal cord. Right now when she yells she is straining the cord. So she doesn't need to go back until March/April

Miss Ave

Avery was smiling by the end of the SLT appointment, a big victory due to her sobbing in my arms at the beginning. When asked what she thought of the appointment she said "that was some nice Mama" I jokingly said to her father it was proof that she spent the weekend down the southern shore.

The reason we were down the shore was that one of Matthew's 90 year-old Nan's passed away last week. She was much loved, and lived a great fulling life. I could only wish to be as loved and respected. Mrs Helen was waked on Sat & Sun then her funeral was Mon morning.

Mrs Helen with Rhys May 2008

Late Sun night I packed up Rhys and Gwen for the hour and a half drive home because Gwen's SL appointment was at the time that we would miss the funeral, it would have been at least a 4 month postponement to the appointment if I cancelled it. Rhys also had his school picture day on Monday. At 8:16 am Monday morning with both kids in the van, I got the call to cancel Gwen's appointment. We rushed over to Rhys' school got his pic done by 8:30 am then we headed down the shore again making it before the funeral to be there with the rest of the family. Most expensive school pic he will ever have taken.

I was glad to be there for Matthew, he did the first reading and he did really well given how emotional it was for him.

spent way too much time in the van this weekend 

Or family pics were put on the back burner which turned out to be a blessing because it was raining on the original day that we were planning on doing them. It also gives us more time to find a coat for Rhys that we like that is in his size.

Gwen's SL appointment has been rescheduled for tomorrow, so I am unsure what the plan for her is.

We also completely uncovered the wallpaper, and it looks to be in great shape. I think we might keep the green and work with it. Thankfully it is the same green in my inspiration pillow.

inspiration pillow 

wallpaper at night 

As I was typing I just got the call for Gwen's first visit with her itinerant teacher, its on the same day as our anniversary. So two home visits coming up. More reasons to make the wallpaper work for now.

And we have three birthday parties, two baby showers (on the same day) our anniversary, Thanksgiving and Halloween coming up. Who knows what else! I like to keep busy, but it would be nice if everything wasn't on the same day. We are missing out on the CHHA family Halloween fun day, because its on the baby shower day.

I also had gotten an awesome deal on a new SD card, unfortunately it took a few times using it and loosing some pics before I found out it was corrupt. I almost lost pics I took during the weekend with the family in because of the wake. I have also realized that most of the pics seem to look poorer quality from that card but that could have just been on my end ;) Thankfully Auntie Mae was able to have a look and found out that I had to re-install drivers to my computer and after much finagling we were able to fix my DSLR too. But that SD card is a write off. It is the lesser of the problems, but it sucks that my brand new card did so much damage and caused that much grief. Thanks again Auntie Mae!

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! 

Universal Healthcare

Everyday I am reminded how lucky I/we are to live in the country that we do.

Canada is a good place, yes we have our issues with government. But who doesn't??? I might disagree with what is going on politically, but there are great things about our country too. No war here, we don't have natural disasters here in Newfoundland (well except for that Tsunami, but that was back in 1929) One thing I'm most thankful for is universal healthcare.

Due to not knowing about Rhys until so late in my pregnancy, I wouldn't have been able to pay for a hospital delivery (as it was my in-laws were kind enough to pay for the private room that I couldn't afford) because I had just switched jobs two months before he was born and my insurance never kicked in in time.

last belly shot with Rhys

How could I in 4 weeks save enough for a hospital delivery on top of getting ready for a new baby? I was thankful for the family support, and the size of our families for the support so that we had everything we needed in those 4 weeks, but I couldn't expect them to foot a hospital bill on top of that. Matthew was in school full time and working full time. He was already working on next to no sleep, using 20 hours a day between school and work, he couldn't work overtime for more money to take care of that. And I was taken off work a week and a half before he was born due to his position in my pelvis.  

little Ninja baby

I don't know how anyone with a Ninja baby can do it. 

With the girls, we had two years of trying so yes we were saving for them (not knowing it was going to be twins) I was seeing my OBGYN monthly, and on meds for 3 months. I had blood work done 4 times a month for 9 months. That would have eaten into our savings if each was out of our pocket.

Matthew had just switched positions so while I was pregnant I did have to pay for my morning sickness meds. I couldn't believe how expensive they were for only one month but they were worth every penny to be able to care for Rhys during that time. But would it have been doable with all the appointments? During that same time I was seeing my OBGYN and she sent me for an early ultrasound due to bleeding, and for a lot of blood work.

the girls first ultrasound - August 2011

And then bedrest...

Gwen

Avery

Because it was deemed a medical necessity I was given a private room when I wasn't in the case room. But due to a mix-up I was given the bill for it one month after the girls were born. $1500 just for the room. Thankfully it was resolved, but if I had to pay for all the procedures, tests, scans, drugs I don't know if I could have faced that on top of the stress of bedrest.

The NICU... I have met too many parents of Micro preemies who had to face each decision with a price tag. And even if they didn't have to worry about it, the hospital did and would send the babies home as soon as possible. My girls would not have been in hospital as long as they were. Gwen would have come home on oxygen, Avery would have come home before Gwen, and we wouldn't have caught her high blood pressure until a lot later.

level three in the NICU for the sickest babies 

Gwen's first room in the NICU

Avery's first room

Avery's bed space on Christmas 2011 

Gwen's bed space Christmas 2011 

We have gotten a MCP audit once for one of Avery's specialists appointments. $100 is what MCP was charged for for taking her blood pressure, weighing her, going over her dose and spending a grand total of 10 mins with the doctor because I had a lot of questions.

The girls have had well over 300 appointments now since they have come home. That's $30 000, just in appointments.

$30 000.

In appointments.

I know that their bed spaces in the NICU (just the bed space) was $2000 a day. That's not equipment, drugs, specialists, nurses, etc.

$512 000 in the cost of their space alone.

Gwen's hearing aids were ~$7000.

Thank goodness for universal healthcare, because I know we would have had to declare bankruptcy by now without it.

I don't have to choose between health, and food.

My biggest wish is that healthcare was treated like a human right, not something for the privileged.

But that is just my opinion, and yes there are some downsides to it.

No system is perfect.

We might have longer wait times for non-emergencies, but I have seen how fast the system can work in emergencies in the NICU. So I will deal with the longer waits, because it means someone who is sicker is being seen to first. And it means that I don't have to worry about not affording to live a life outside the hospital.

Because that is just as important.

Avery & Gwen 

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.

Just too hot

Miss G informed me today was too hot.

no hearing aids mom too hot 

Too hot for hearing aids

its too hot

Too hot to do anything 

let me take my clothes off too mom 

Just too hot

sooooo hot mom 

She spent most of the day screaming at me, throwing a fit (that is why you can see her stork bite so well) Both girls went to bed in a tank top onsie and a fan on for the first time. An hour before bed it was 29C (about 85F) in their bedroom, I put the fan on, and they haven't made a peep within the first 5 mins of going down. 

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