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.

Happy Holidays

2013

11:30 am on Christmas Eve we saw Santa at the mall, that gives you an indication how busy this month has been. Between me going back to work, needing to get a new van quick, birthdays, and soooo much snow we haven't stopped!

Hope everyone has a safe, wonderful, family filled holiday season and new year!

Side not look how much bigger the kids are vs. 2012 (and they are in mirror to this year)

The worst day...

Dec 8, 2011

I panic thinking of it, it was the date I went into hospital and was placed on bedrest.

It was the date I was told the girls only had a 10% chance of surviving the birth.

5% chance of surviving.

only a 2% chance of being "intact".

I was told I could just stand up, that because it was before 24 weeks they were not expecting survival.




It was the beginning of my nightmare that I couldn't wake from



I cried for 48 hours. Heard every scary statistic. Knew too much. Was reminded again and again what I would need to do "when you get pregnant next time" as if the girls were already gone...

Talking of not only my mortality to try and wrap my brain around were I would want my babies placed to rest if they didn't make it.

I spent 14 days on my head fighting to keep the girls inside, ignoring my own health risks and focusing just on them. Quickly I realized that my crying might be doing more harm, so I pushed back my fears, and focused on them.

Fighting for every steroid, every antibiotic, refusing to move unless I was made to. And then I passed the 24 week mark and I had more support in our fight.


I thought I was ready for this day, that I was over my sadness. The girls are fine, and doing well. But the thought of bedrest, of Dec 8th makes me sad.

I hope next year will be better.


I have been told that it was the day that makes people proud of me. That I became a supermom.

I didn't see it that way.

I just did what I believe any mom would have done if given the chance.

So today I have to remind myself that at the end I got my beautiful baby girls, and remind myself once again that everyone is safe, alive, and as healthy as they can be.

Gwen

Avery

It doesn't help that there is a lot going on right now that I can't get into yet, on top of my normal issues with Dec 8th. 

So I'm sorry if I don't seem very festive. I'm sorry if I might not smile as much as I normally do. I'm working through this and trying not to let my kids notice. 

World Prematurity Day

Today is world prematurity day, and I commemorate it with my babies

This video was done at the half way mark of the girls NICU stay...




Just shy of two years has changed a lot in them. I can't believe how much they have changed

new pics

We recently got new family pics taken so I decided that it would be net to switch the picture on the blog. I was debating which one to choose.

A nice pic of Rhys

very hansom little man

He is the ninja after all, but that isn't quite right.

Maybe one of Gwen

silly Gwen

Or Avery

those eyes! 

Maybe a really nice family shot? that would cover the three preemies and the ninja

I know! something that is of all of us, but it more like "us"

Perfect! Rhys and Gwen acting silly, Matthew not quite looking, and Avery acting like she doesn't know us. 

Thanks again Auntie Mae for taking the pics, and reminding me what is important.

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!

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!

 

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 

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.

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.

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

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.

Halloween & first days of school

So school and Halloween are coming up. We have the girls costumes already but still have to get Rhys'.

As geeks we take costuming to a bit of an extreme. I acknowledge this.

Rhys has been a Ninja

Oct 2008

a Lion (it was the month we got married, I can be forgiven for falling short on this one)

Oct 2009

a pirate (and yes that is a parrot on his shoulder)

Oct 2010

he redid the pirate in 2011, which was upsetting to me. I was willing to make/buy a different costume but he refused. 

and Thor (with Avery as Wonder Woman & Gwen as Super Girl)

Oct 2012

the girls re wore it at the convention in April 2013

Rhys is asking for another Super Hero, not going to say who just because I know we can do it, it just is going to be way to cold! It is October in Newfoundland. So we will be going to the Halloween store in the next week to see what he will be. 

And he starts school in 6 days... oh my! 

I need to come up with a yearly first school day tradition between now and then. Suggestions?

There will definitely be pictures. Lots of pictures! 

My first day 1989

Scrapbooks

I loved making a digital photo book (semi scrapbook) for the NICU on the girls first birthday as a visual reminder and resource for other parents.

Not every baby will have the same NICU experience, that I know for a fact from having two very different ones with the girls and hearing about Matthew and Angela.

I have been scrapbooking for years and have an opportunity to go to an all day even in late September where the proceeds are going to charity, something right up my ally. I have been putting off starting the girls books but now with such a great start I have been going through pics getting Gwen's ready. I hope that if I get everything ready, pick out layouts pics and paper that I might get through at least her leaving the NICU.

But due to trying to get them all organized I am cursing the software I have to make multiple small pics in one sheet of 4x6. I haven't used it since I was still pregnant with the girls and cluing up Rhys' first year book.

example of Rhys' visits 

See I am a scrapbook procrastinator! Rhys was 4 before I finished his book, wait... I haven't done the last page yet oops.

But I do well in organized events with everyone scrapbooking around me. The last retreat I went to, I ended up finishing Rhys' book doing 15 double pages in one weekend. So giving myself 13 hours to try to get through over 4 months and 4 holidays I think I might just do it, if I prep.

So back to prepping. Wish me luck.

Denial?

Lately in conversation with strangers when asked how old the girls are I always say "they are x months old, but they were a bit early"

My mother-in-law has heard me say this and each time I say it in her presence she corrects me saying "they were not a "bit" early they were 15 weeks early" And if she gets asked their age she always says "they are x months old but were 15 weeks early"

I can understand were she is coming from, the girls were more then a "bit" early. They have grown well and are doing awesome given what they have gone through and all they have overcome.

But...

I love sharing the info, I do. But part of me wants to try to, not forget it, but get past the NICU the premature delivery. Of course I will share my info with others, help people going through the same thing, phrase my girls for overcoming more in their short lives then most will in their lives.

At the same time I don't want to forget.

I can't.

But in trying to distance us from it to strangers am I doing the girls a disservice? Should I just say they were 15 weeks early to everyone who asks?

I realized that I had believed that it was only 14 days before held Gwen, and had be believing that for some time. That isn't true. I am getting pictures of the girls organized to start their scrapbook and have realized I held Avery at 15 days and Gwen was 23 days old.

15 & 23 days before I could hold them.

Avery- Jan 5, 2012

Gwen - Jan 13, 2012

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!