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Thursday 26 September 2013

Gaining square footage

So we moved into our first house back March 1, 2012 during the girls NICU stay. In the first month we replaced the floors and wall colours in the kids rooms, finished the basement into a playroom. We've been putting off the living room because other then the ugly accent wallpaper and the paint job that I can sorta live with for now it is in decent condition.

The textured painted wallpaper seems to be barely staying on the walls and I have jokingly threatening to take it down.

I wonder if the twins heard me...

Avery pointing to their handiwork

I was in the bathroom and when I came down both girls were in the corner, Avery sitting on the end-table. So there is paneling under the wallpaper. After all the layers of flooring/wall's we have encountered I shouldn't be surprised. Can anyone say three layers of carpet in the girls room? Or three layers of walls in the playroom? We jokingly have said more then once that we gained square footage. 

So what to do??? 

After a bit of debate we decided that we wanted to take down the wallpaper before and the paneling looks better then the wallpaper,or the wallpaper with a massive whole.

only 30 mins in and its coming down easy 

What things have your kids done while you were in the bathroom? Next time I'm going to give them plastic scrappers. Just kidding!
 

Wednesday 25 September 2013

1 appointment, 2 appointments, so many appointments!

Physio went well, we just have to keep Avery off her toes. So no more taking her hands for tip toe walking family.

Her physio therapist will see her again in a month, but she thinks that she will be walking walking by herself.


We also got the call finally from the speech language therapist office, they both were referred in April 2012 and they have separate appointments in October. Long wait list, even longer then what their letter suggested. Hoping to be able to get them on the same day for latter appointments.


Avery & Gwen 

Sunday 22 September 2013

Three little steps

She did it!

Well, only once. But Avery took three steps.

We still are seeing physio on Tuesday, who knows what is going to happen but yay she did it



Friday 20 September 2013

Eye appointment

Both girls had their followup eye appointment today and nana Joyce came along too. It was the quick one, no drops or anything. Gwen was great and was in and out in under 5 min.

Gwen

Avery...

Well, Avery is a different story. She has this fear of the outpatient clinics now and freaks out when she goes into one. So after coaxing her into looking for the test she did as well as can be expected. She is still slightly nearsighted and will continue the trend, we don't know if she is much more nearsighted but we know that she still is. Joys of her genetics not being premature.

Avery with the parent she takes the most after.... well, physically 


Now we don't need to go back until March 2014, when they will be getting their drops again. The long appointment.

Next up? Physio for Avery next week.

Thursday 19 September 2013

But I'm still in it

Between starting appointments up again, and gathering pictures for Gwen's scrapbook I've been rather reflective. I'm sad that Avery now has to restart physio because it feels as if it is a step backward. But I can't be too sad because I don't know if she will need beyond the next appointment. And honestly it is better to get her checked out then to leave it be and not know.

I heard someone recently from some 9/11 documentary or something that on the day he was freaking out and a police officer said "don't worry you are just suffering from post traumatic stress" and he responded "post traumatic, but we are still in the trauma" or something to that effect

Now how does that relate to me?

Not much for me personally, but I do know that many parents that live through the NICU suffer from P.T.S.D.

And honestly I can understand why. You go day by day, moment by moment not knowing if your child is going to die. Alarms startle you wondering if this is their last struggle and if they are going to give in.

Avery


That is unbearably hard.

I thankfully had a great nurse say to me in the first day to ignore it all. They do. Look at their colour and you will know how they are really doing, sometimes the monitors are overly sensitive or wrong and the baby is on an upswing. I quickly could tell you if I should really be worried based on their colour. To this day if one of them is "off" I know by looking at them. I don't need a thermometer, I can tell that Gwen turns a purplely blue and Avery gets to a translucent gray.

Gwen's space 


Eventually for me the sounds of the NICU were calming, it reminded me that the girls were where they needed to be and in capable hands.

But I know other parents found it stressful. Matthew was rarely comfortable in level III. Without a doubt he would be there for 10 mins max and need to rush to the washroom being gone for 15+ mins. It was an upsetting place for him, I teased him that it was his subconscious reacting to being back in the NICU.

Matthew & Gwen

Other parents would get a look of panic at every alarm, and given that there were 8 babies in level III between the two rooms and sometimes 5+ things that could alarm on each baby it was rarely quiet.

Its constant noise. I've heard it liked to a battle field. The non-stop noise, babies fighting for their lives along side of their nurses, doctors, and specialists. As with someone who goes through a war, they are more prone to P.T.S.D.

Avery

And it follows you

I'm still in in per say, were is the post?

All of the appointments.

All of the health issues.

Always having to do things differently because they were early.

I know how lucky we all are. The girls are behaving like normal 20 month old's, there are few lingering health issues, and no one has P.T.S.D.

But a break of 4 weeks from appointments is not the norm. I shouldn't be recognized by hospital parking staff. They shouldn't know my kids names.

We are still in the NICU.

our view from our care by parent room in the NICU 

Not physically, but mentally. We have to isolate ourselves in cold and flu season, at least for another year until they are on their third. We have to memorize countless procedures, appointments, specialists, and health issues.

I can only imagine how hard it is for the parents who suffer from P.T.S.D. Constantly having to relive it.

Eventually this too will end, and we are getting discharged from appointments and specialists. But for now we are still in it.

Wednesday 18 September 2013

blood pressure and Avery part 2

I forgot to mention that Avery's nephrologist thought she was a boy (he sees hundreds of patients a visit and its been since April?)

She was also in green and blue, and honestly babies are hard to tell apart. Avery is a unisex name, just like Rhys.

My poor short hair girl.

Avery Sept 2013

Better then her bald big brother. It took forever for him to get any hair at all.


Rhys Sept 2009


I teased him after, and he felt horrible. But at least it is better then strangers thinking Gwen is Glen.... That has happened more times then I want to admit.

Do I look like a Glen??? Maybe?


But I love her nephrologist! He is awesome, and will give you a random medical lesson whenever you see him. Yesterday we talked about the history of the two different drugs Avery was on and I am a type that enjoys learning new random info.

He also talked a bit about her voice and vocal cord mentioning that as she grows the paralysis won't effect her voice as much. Not just because she will learn to cope with it but because the bigger the throat gets the more space air has to move past the cords so it won't be as raspy. Makes since, don't know why I haven't thought of that myself.

I also forgot to mention that even with her having a meltdown during them taking her blood pressure, it was still lower then it needed to be. So progress! And it makes me feel better knowing that even with her epic tantrums she isn't doing any damage.

And man is her temper epic!



Tuesday 17 September 2013

blood pressure and Avery

Avery had her nephrology appointment today. Her nephrologist travels in from Nova Scota twice a year, and he is happy with how she did. He wants her blood pressure checked in November at her pedi appointment and he will see her again in the spring.

He also said that they will keep a close eye on her blood pressure at 7 years old until she hits puberty due to a reappearance in blood pressure issues.

Avery Sept 2013


We bumped into some NICU buddies all in for appointments. The Nephroligy day is a busy one, because something like 50% of pre 32 weekers will have high blood pressure when they hit term. And its getting caught more frequently in our NICU with a lot more pre 27 weekers staying in hospital past term. Avery would have been discharged before her diagnoses if she was a singleton but thanks to Gwen's O2 habit she got caught early and on meds right away.  

While in the hospital, we dropped by physio to let them know that she isn't walking on her feet yet. Miss Ave will walk around on her knees and if she takes your hands she toe walks, I did too as a child. I'm not that concerned, but its better to get it addressed and it be nothing then not and wish we did earlier. That, and it will reassure some family members. So she is getting seen next week.

Not looking forward to the fact that I added to the craziness that is the end of Sept appointments, but what can you do as a preemie parent?

Friday 13 September 2013

Auntie Mae & Family Photos


My wonderful friend Mae, often called Auntie Mae or Auntie Mae Mae, is a great photographer. She loves to take pics, and I love the outcome. We have known each other for 9 years now, and lived together with one of her sisters and Matthew. She is Gwen's godmother and one of her middle names Bridget is after Mae.

Auntie Mae in between shots Gwen looking at the camera 


She was Rhys' first roomie, and they share a great unique bond because of it. How many people can say they lived through/with a newborn that wasn't their own or in their family?

Rhys & Auntie Mae cuddles 

Auntie Mae had magic hands
last summer selfie 


Mae will always be the kids Auntie by choice not by blood, and I love that her family has taken us in too. I love her like the sister I didn't have, and even though we can be very different we still love and respect each other.

A few of her pictures have shown up before in the blog and so has she, the banner pic is one she took for the girls first fathers day. She has taken so many pics of the kids and of us that I love it when she gets excited and starts talking about new ideas for a family shoot.

Avery in the hospital 

Gwen in the hospital 

Mae babysit and did a photo shoot (collage I made for the grandparents) 

my princesses at home 

Love this one! 


Right now we are in the planning stages of our next family shoot and we are going to attempt to get family pics every year. We have succeeded except for the year the girls were born because we were waiting for me to be further along to make it maternity pics and family pics. Little trouble makers

Gwen



Hopefully they will happen in the first week of Oct, we have to work around Matthew's work and Mae's.

Matthew & I last summer 

I know I could never do justice to Mae in only one post but I am thankful that she has chosen my kids, and they are lucky enough to have her as an Auntie. 

Thanks Mae!


  

Wednesday 11 September 2013

rainbow run

So I heard about the rainbow run before many times and when I found out it was coming here and the proceeds were going towards stopping bulling I signed up!

Unfortunately due to circumstances it ended up being postponed by two weeks so my run buddies couldn't do it anymore, but Matthew was able to be there and take some pics in action with the girls

pre run (more of a walk for me)

Girls were excited 

part way through 

I would do it again, I just hope that next time I would be able to do it with others. 

Especially because the funds went to stop bulling in Newfoundland

Tuesday 10 September 2013

Beginnings

Rhys' first days of school have been great. No tears from him or us.


Rhys' sign thanks to Scarlett Love she is so awesome and made this really quickly 

"enough pics mom!" - Rhys

Class of 2026

Giving Dad a squeeze in his Class of 2026 t-shirt

Gift from his teacher on his first day

We have had to change his wake-up time and bed time twice since Thursday in attempts to get him to school on time. We only live 5 min walk away so there is no school bus, but I have still drove him over in a mad dash three of his four days. I think we finally have worked out the best sleep/wake-up seclude for him because today was on time.  I'm doing a lot better with the early mornings then I thought I would. I'm not a morning person. But the positive is that I'm getting better with it as we go.

I'm already wishing he had full days. 

I feel like I just drop him off and then need to go back to get him, but we have to wait until grade 1 before we get full days.

Still enjoying a break from appointments, still another week before we get one and then we jump head long into it again. 

Tuesday 3 September 2013

Update on Icky

We found her!!!! And Rhys couldn't have been happier. She got mixed in with laundry and was only showing white.

hugs for both Icky's before Poppy come to get their's 

ooooooh

I have three very excited kids.

Rhys - Sept 3, 2013

Gwen - Sept 3, 2013

Avery - Sept 3, 2013

Why?

They had a blast yesterday going to the Geo Center. 

Rhys has school in 2 days.

Daddy is off for just over a week in 3 days. 

And the girls still don't have any appointments yet for another 2 weeks. 

That and we took some older toys out of storage, the excitement of seeing something for the first time in months


But we are missing Rhys' Icky from home. Can't find it anywhere. Thankfully we borrowed nanny & poppy's Icky last night. No clue where she is gone. Need to keep looking for her.

Icky went into surgery with Rhys

Sunday 1 September 2013

Just keep swimming

We have hit September, and I'm getting anxious.

I know I really shouldn't but I'm feeling like I used to gearing up to a new school year. I grew to hate school due to being bullied. But I loved University because I truly love to learn.

Rhys isn't me.

Rhys has no worries about going to school. He is looking forward to it and loving it. So I have to just let him be, work through my nerves, and make sure he doesn't know about my anxiety.

I also fear that my sweet little man might bully others and that makes me sick to my stomach. We have had many story sessions about bullies and how to deal with them. I also told him stories about my own experiences and finding out that people didn't realize that their actions were hurting me. Anything to prevent it from happening.

But now we have 4 days until he starts. He has all of his supplies, now I just need to figure out what I need to help him through the year.

Aug 2013


How is it that he is going to school?

Aug 2010



I have also been enjoying the longest break between doctor appointments for the girls. We are entering into our 3rd week and we still have 16 days before the next one. I will love it when this becomes the norm instead of the exception.

But then we are right back into it with two appointments that week.