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!

Vacations, Walking, Appointments, Regatta oh my!

Life has been busy.

What, really, you ask? Life is busy with three kids?

I feel like this is how I'm starting lots of blog posts recently.

Since I last posted the girls had their 18/19 month assessment at the PPP on July 25th.  And they got assessed at 18/19 so we don't have to go back until they are 3 year olds!!!! You won't believe how excited I was to finally get the "they are behaving like their actual age, not their adjusted age"

After the appointment we went on a mini vacation with my parents and in-laws. The kids loved it and so did we! On the second day Gwen decided that all she needed to walk was an empty 4L bottle of water in her hand and all the family to see her. Since then she hasn't stopped!

While on vacation Matthew and I marked our 10 year dating anniversary on the 27th. We didn't do too much because we were running around enjoying our vacation so yesterday we went to lunch with the girls to acknowledge it.

three little monkeys on the top bunk 

Also during the vacation we were able to spend some alone with Rhys and drive to the Aviation museum and swing by the silent witness memorial. Rhys loved the special attention and being the big boy doing big boy things, but he also insisted that we buy somethings for the girls while we were there.

Captain calling 

flight simulator 

Look how big the gun is dad!

Looking at the different planes and "all the mechanical pieces"

plane going though the museum 

silent witness

Daddy and Rhys taking in the memorial 

We also went to the touch tank in Terra Nova Park. Avery tried to climb into it she loved it that much

Avery is excited!

Trying to get into the tank!!!!

Touching it all 

Mom look what I did!!!!

After the vacation there have been a bunch of appointments. Avery doesn't have to see ENT for 9 months. Gwen's AVT is happy with her word count. They will be getting their speech therapy appointments in the next few months and next week we get the big cardio appointment to see if Avery is to stay off her meds and to see if the pressures in Gwen's heart have lowered like expected.

This past week we also got to go down to the Royal St. John's Regatta. The kids loved it and this is the girls second one (third if we count their time in-utero)

Regatta 2013 (Avery & Gwen) 

Regatta 2012 (Gwen & Avery) 

I know there is more I want to talk about but I have two baby girls who are climbing all over me! Back to life

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

Busy busy times

Been really busy since my last post.

Rhys loves just going to school, and honestly I love not having to run him straight from school to daycare. He has an open invitation to visit on any days he has off from school, which made him happy. He ended up running around taking pictures of everything "to always remember it"

leaving daycare for the last time

heading to the van from the daycare (nana was in the front seat)

Mothers day was very nice, I got spoiled a bit between Matthew and the kids (and even my parents & In-laws) Love my hair-clip that Rhys picked out himself, and am really looking forward to seeing Sting next month (thanks mom & dad!!)

Matthew and I got out Monday night for a movie. Mom watched the kids, and seemed a bit stressed when we left. We went to see Iron Man 3, and given how obsessed Rhys is with Marvel I had to give him the 5 year old version of the story.

Rhys loves this image of Catvengers, I wish I could take credit for it but its not mine 

He is currently in a Captain America kick and I've been debating letting him see the live action 2011 version. I just seen it myself and out of all the new movies, it seems like the most Rhys friendly. I think I would need to watch it again to make up my mind. I usually believe in seeing movies in their proper order, but he isn't ready for Iron Man or Hulk. I guess he is just going to have to wait until he is mature enough. Yet there was a little boy at Iron Man 3 that couldn't have been older then Rhys... yeah, no...

The girls love to eat, and love to eat as much or more then me. I've been finding it challenging coming up with different meals. I really need to get into meal panning, so I know what is on the menu every day.

Avery spaghetti face 

Gwen loves the spaghetti 

 Gwen's new earmolds came in, poor little things ears were getting pinched. So I'm glad that they were in when we went into the hospital for other appointments.

Gwen's new ears 

We had two days into the hospital this week. On Wednesday, they had their follow up cardiology appointment. It was a very surreal day, because their last cardio appointment was the first appointment after they got discharged from the hospital a year ago.

Gwen's ECO showed the hole in her heart was gone (something that happens in the first year of life) but her EKG showed that the pressures were still high on the side of the heart that the hole was. So she needs another EKG in three months, if the pressure is starting to go down or is gone she gets discharged! She now weighs 20lbs 1oz!!! took her forever to hit past the 18lb mark. She is 79cm tall

Avery was switched to a once a day blood pressure medication. She goes back in a month to see if they can lower her dose in hopes that she is weaned from the meds by the time she is 2 (or 2 adjusted) Avery now weighs 21lbs 5oz and is 72cm tall. 

Then Thursday, Gwen had her physio appointment moved. After some juggling with the grandparents for Avery & Rhys we were off. Gwen showed off. She has been standing up not holding onto anything first on mothers day. So she got discharged!!!!!!!! Wonderful days! 

Yesterday, Avery climbed up onto the couch, and Gwen turned around and took a half step.

So now we are loosing doctors again.

Gwen now sees:

-audiology (she will for life)

-audio visual 

-itinerant teacher 

-eye doctor (once a year) 

-cardiology (she should get discharged next appointment) 

-prenatal program

-pedi

-she will be seeing speech language 

Gwen loves the camera

Avery now sees:

-cardiology (she will for life) 

-nephrology (she will for life)

-ENT (she will for life) 

-audiology (every 6-12 months soon to be discharged) 

-eye doctor (once a year)  

-prenatal program

-pedi

-she will be seeing speech language 

Avery's cuddles with Pop

I have to keep reminding myself how many they have been discharged from. I have to remind myself how lucky they are given they were so early. 

I think part of the reason why it has felt so busy, is because of how nice it has been! We have been spending as much time outside as we can and loving it. The girls one nap has been moved back a bit so at times I feel like we are missing out on the day a bit. But they are happy, why mess with it? 

Its great to see how they are growing and changing, all three of them. I'm so happy that I get to witness it all and to be their mommy. 

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.