fam

fam

Sunday 29 December 2013

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)

Sunday 8 December 2013

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. 

Monday 18 November 2013

30th birthday prep

Matthew is turning 30 this Friday. I keep thinking how crazy the girls have grown, but he his preemie #1 in this house and has changed greatly. I have seen earlier pics, but his mom isn't a fan of those so I only have copies of him nearing the end of the NICU stay.


home a week 
Nearing going home from the NICU 

going home day 

Rhys has the blue and white blanket from when he was a baby, and Avery was in the same cot as her daddy when she moved out of her incubator.  

But anyways, I am reminded how much the girls have changed and can imagine how Matthew's parents are feeling nearing this milestones. 

So now I'm planing his birthday party and looking back at how much he has grown. I am so thankful everyday for his doctors and nurses, some even took care of the girls. But without them trying to save Matthew 30 years ago, the kids wouldn't exist. 


Another wonderful pic I have is one of him and Avery's godmother (Matthew's cousin who is 3 months older then him) 

you can tell how tiny he was next to her
two of them on other side of me in 2012 he has caught up in size







Sunday 17 November 2013

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

Wednesday 30 October 2013

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.




Sunday 27 October 2013

callings

I have been trying to think this post through for some time now, but I have a hard time talking about just me. I'm sure people are now thinking that the blog is all about me, and in a way it is except I'm talking about my kids or family. This post is all about me. And that is awkward for me, just as much as looking at pictures of myself.

new pic from family photos with Auntie Mae- but even this makes me awkward 

One thing you have to understand is that since I was very little I wanted to be a mom like some want to be a doctor or a nurse or a teacher. I knew it was a major calling in life, and it was hard to think of doing something else. In fact I still have a hard time figuring out what I want to do other then mothering. 

Shortly after working out that motherhood was my major calling, and figuring out how that happened. I felt the need to be a surrogate one day. That after I had my own children that I would love to give the gift of a child to others who needed that help. 

My first hurdle was convincing Matthew. 

We were still only dating when we were discussing children, and you might have read before that he brought it up very early in our relationship. Because of that it was an easy topic, and depending on how serious you are in your relationship and how much you want kids it is a good way to make it an easy topic to broach it that early. Or that could just work for us. Anyway, one of the first more challenging conversations we had was about how I wanted to be a surrogate one day. Once he was assured that I would just be the carrier and after questioning how he would feel if one of his really close female friends couldn't have their own child for whatever reason, he felt a bit better about it. But he requested that I would only do it for someone we knew. 

As time progressed, and I had the ninja without any difficulties. I knew that one day I would have to talk with Matthew about the chance to be a surrogate for someone other then a friend. 

I loved how easy pregnancy was, at least how easy it was for me. Because if I couldn't even tell with Rhys for so long, then I must take to pregnancy well right? No symptoms, no illness. It just felt right.

In the time between the girls, I was talking with someone I knew through school. She had discovered recently that due to a medical reason she would never be able to biologically have her own kids. After that talk, I felt reassured that surrogacy would definitely be in my future. I just needed to get pregnant on my own and complete our family.

And then, the girls...

After their birth, and they were stable, I had a very selfish moment. I lamented the fact that I would never be allowed to be a surrogate. 

I was "damaged goods", no one would want to put their expensive possibly only chance at a baby on someone who couldn't carry their own to term. And who can blame them? Not I. I know that one of the main reasons that we probably will never have anymore kids is our own worry that I won't be able to carry them to term either. 

So now what? 

It is a dream that I just have to let go. A calling that is unfulfilled. I might just need to work out how to change that calling. But until then I have 20+ years of knowing what I wanted to reconcile with the truth.

Friday 18 October 2013

Tooth Fairy

Mr Rhys is growing up way to fast for me. His bottom front teeth have been wiggly since the second week of School.

I picked up fabric for his tooth fairy pillow today, and before he left for swimming with Nana, he pulled out the left one.

Calling everyone to tell them
new smile 


holding his tooth

So now he is off for sleepovers and three nights of tooth fairyness

Friday 11 October 2013

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. 


Thursday 10 October 2013

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!


Tuesday 1 October 2013

Are you his mom? and gaining square footage part 2

Its a beautiful +25C October day here, so I walked to pick up Rhys from kindergarten. There is a convenient trail that is across the street that leads directly to the school but it passes "the purple park" that is right behind the school.

Daddy and Rhys walking home on the end of the path on his first day

"The Purple Park" with Rhys' school in the background 

Rhys has told us before that their new gym teacher on nice days will bring them to the park to play. Its a great idea its so close to the school, and it has a big field to run around. So it didn't surprise me that we passed an elementary class there for gym. Rhys ran right up to his teacher, who is maybe 5 years older then me max, and said hi! 

We had a quick talk and at the end she looked at me oddly then asked "are you his mom?"

I know I was younger when I had the ninja baby. 

But I wasn't unbelievably young. 

So ether I look younger then I think I do, or Rhys looks older. 



Yet this hasn't been the first time this has come up, and it is more frequent the older Rhys gets. It has never come up with the girls. Maybe because I look like I should only have little kids, and that I am too young to have a school aged kid?

I know it isn't the norm to have kids younger, at least not here. I know that I might be one the younger mom's in Rhys' kindergarten class. But I doubt that I am the youngest.





We have been kept busy at home too, with the wall

Last nights progress

And then we peaked under the paneling to see the state of the wall underneath when we found...

Wallpaper?????

So now we are placing bets on whats under that wallpaper. But the trend with the house continues. How much space will we gain by the end of this project?




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!