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?

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!


  

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

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

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! 

the last 4 years

The past 4 years can be broken down into two 2 year brackets, the first two years was the heartache of ttc (trying to conceive) a baby. The second two years (starting July 24th 2011) was the moment I knew we were having another baby, little did we know Avery was hanging out too!

Auntie Mae took pics of our 19 month olds

Let me start with the first 2 years. Of infertility, sadness, and living in the dark about it.

Matthew and I knew we wanted to have at least 3 kiddos. It was one of the earliest discussion we had as a dating couple, and one that he started. Matthew said outright "I want kids, I want more then two. If you are not on the same page, lets just end this now and still be friends"

I also wanted kids so it worked out well.

Rhys our little ninja baby was a happy surprise. He was a one shot deal. No charting cycles, no keeping temps, not even fully knowing what CD I was. He was a miracle due to my odd cycles. I remember being a young teen and discovering that I would have issues getting pregnant, and that I should try to have them younger to give myself the best odds. So because of all of this Rhys was even more of a surprise.

Due to the fact that our wedding was coming up, we decided to wait to ttc until just before the wedding.

Little Ninja at our wedding

Rhys was 18 months at our wedding, and we wanted to try and keep the kids close together in age. We didn't know how long it would take.

I quickly discovered a great support group online. I never knew how common infertility was, or how long people could try for a baby and what they would be willing to do to have one. Some of these women I'm still friends with today.  Did you know that about 70% of infertility is secondary infertility. People who have kids and then for some reason can't get pregnant again.

Infertility is like a big taboo. You don't talk about it with anyone but your partner and even then you try not to talk about it too much. You try not to dwell, you keep to yourself and you blame yourself. I was worried to talk too much about it with Matthew because I -knew- it was because of me. Yet even with that knowledge I still had to convince my doctor that I needed to figure out what the issue was. That took longer then it should.

At the beginning, the only people who knew we were ttc (other then my online friends who were also ttc) were Matthew, myself and Gwen's godmother. After a year and a half I told Rhys' godmother, and that was it until just before I found out about the girls.

Why can't we talk about it?

Why must people who are going through this feel as though they have to live in secret about it?

It's sad.

And it was a sad time.

Then, July 24, 2011...The second 2 years

actually this is the one from Aug 2, 2011 I saved my expensive test for when I -knew- it would be positive 

I couldn't have been happier! It was as if all the worries, concerns and heartache dissipated. And then discovering at 8 weeks that there were two babies.

But then after the happiness of being pregnant, of having twins came the fear of loosing them. The discovery of dilation and needing to be put on trendelenburg bedrest. The odds of only a 10% chance of surviving birth. Each. 

Blame in bedrest, believing that it was all on me. Every day was a struggle, a fight with my own body. The first night I couldn't sleep, I was crying talking with my mother-in-law about her experience with three bedrests and two preemie deliveries. One was a very sad outcome that was too close to my own situation, the other was my husband.

And that is just the emotional side of the bedrest. Physically it took a great tole on me, for the first 4 days I had a major headache from being head down, and my neck throbbed. I tried my best not to complain, to not think of my physical discomfort because I believed that if I was too concerned with my own pain I wouldn't win the fight to keep the girls safe inside.

I was told that I would last at most 4 days due to what the medical staff had seen before. That at 6 cm I was too far gone to give them more time. But I am stubborn and I knew that even 4 days would get them to 24 weeks and would give them better odds. I also knew that I would set a new bench mark, that I would last longer and give the girls as long as I could.

We fought for our pregnancy, I was going to fight to give them the best start before they began their fight. But on the Sunday when I couldn't get comfortable we quickly learned that I finally hit 10 cm. But I wasn't going to give in yet. I gave them another 4 days. 4 days to get just past 25 weeks, before the doctors said that it would do more harm with risk of infection. But because I lasted 14 days on bedrest I got them to a 60% chance of surviving their birth.

The sadness of their early delivery was overwhelming. Going in, we didn't know if they would survive delivery, or if I was only going to deliver Gwen and go back to bedrest for Avery. Pushing for over 49 mins on Gwen I had believed that she was gone. That it was too much on her little body. But she came out screaming and did really well. Avery decided that she wanted to come too and only 9 mins later she came into the world toes first wiggling all the way.

The NICU was at least a calm spot for me. Yes my girls fought for their lives there with their medical staff, but it was no longer in my hands. The girls did what they could and I trusted the nurses and doctors fully. I knew that they would do whatever they could to to keep them alive. I met other parents who were watching their little babies fight and we still talk to this day and I love their kids like family.

Gwen

Avery

Lingering health issues and doctors appointments. I naively believed that if they survived birth and the NICU that they would be fine. I quickly learned that between all the things that had to be done to them to help them survive could actually cause lasting affects. I should have known better, but after seeing your children defy the odds part of you believes that that is what they will continue to do.

They were followed by everyone, everyone.

Avery had blood pressure issues, and had a voice issue that we discovered overtime that was due to a paralyzed vocal cord. She will always have it, and it came about due to her PDA surgery, without the surgery she would have died.

Gwen's prolonged ventilation, her three bouts of jaundice, the antibiotics they put her on many times her temps spiked until they found out if she had an infection and her extremely low birth weight all contributed to her hearing issue. Auditory Neuropathy, why did it have to be such a complex diagnoses.

But the positives of being followed by everyone is that we now know Avery is nearsighted, and it isn't due to her premature birth, it's genetic. She will need glasses before she starts school, and will get them before most kids vision problems get picked up. Without being born early, we wouldn't have know this.

Without being born early I wouldn't have learned as much as I do about blood pressure, hearing, vision, development. Many doctors and nurses have commented that I would do well in the medical profession due to how much I retain and study about all of the obstacles the girls have faced. My response is that I am their advocate, if I don't understand everything then I can't fight properly for them. I need to give them the best chance for them to develop and grow like normal kids. Not like preemies. Not like kids with disabilities.



So. Looking back, what was worse?

The first two years were hard, I hit some of my lowest points during that time. But it ended with the happiness of becoming pregnant, and some online friends that I will always have. 

The last two have seen some of my happiest and saddest moments. 

So they both were bad in their own way, the only way the last two are more manageable is because I have my girls, I have the support of others and I'm not covering up my sadness. 

Avery

Gwen

Friendship & Fathers Day

A lot has been happening this week, and its made me forgetful over posting things I was planning on. So please forgive my forgetfulness.

Rhys has clued up his literacy program in school last Thursday.

He did wonderfully and has made many friends in his future kindergarten class (and his class all the way through to grade 5/6, they have an intensive French option in grade 6 for them to split then) He will be going to a small community school, so small that there are only 5 kids that live far enough away to qualify for the bus. The whole school is about 225 kids (K-6) and there are only 20 kids registered for his year. Rhys has a birthday party to go to tomorrow with his best friend from his class, and they live almost directly behind us.

"Rhys, show mommy your certificate"

How about you look this time cookie face? 

with his literacy teacher 

Rhys also has asked me to make him one of those friendship bracelets, remember those??? I told him when he is a bit bigger if he wants to know how to make them I will show him. 

in progress, in his favorite colours

I remember making a ton of these and people selling them too at school, so its a good skill to learn even for my little man. 

Rhys is also starting up soccer next week, and his team's name (if I heard her twice, because I asked her to repeat it) is Slytherin. This makes me a geeky mom very happy! Is that bad? or the fact that I keep thinking how my blond haired blue-eyed boy would look great in the uniforms if its the "right" colours???

Come on green and silver would be awesome on this boy! 

But I'm a silly mom.

Also during my forgetful time, Fathers day happened. Matthew did really well. He got a new baseball cap (he picked out and knew about), an iPhone case with the kids pic on it (he didn't know about)  and this...

"you are not suppose to make me cry on Fathers day!" 

the poem in the frame is this

Major props and thank you to my friend at Scarlett Love

A good online mommy friend at Scarlett Love did this up for me only two days before and gave me lots of choices to work with. She is awesome, and if you want some random custom chalkboard art you want you should check out her etsy or her on facebook. I know she's in vacation mode right now, but due back June 30th. 

*I'm not payed to say this, in fact she probably doesn't remember I have a blog, and she doesn't know I'm posting this*

 

Well, I think that is everything I was planning on talking about this past week yet forgot

NICU play-dates

we had a play-date with 27 week twins who were the girls roommates, it doesn't hurt that both older brothers are the same age too ;) 

trying to get two sets of 16/17 month old twins in the same shot was hard

the girls checking out the gate

Avery liking the rail 

all four looking up 

preemie parent problems

*Warning early pics of the twins ahead*

I don't know what it is but I have discovered that some people believe that I caused my girls premature birth. Not just me, but everyone's. That any issues in pregnancy are caused by the mother not taking care of herself.

Unkie Dew teaching the babies the raptor screech  

This couldn't be further from the truth in my case. I was the healthiest I ever was, and was monitored so closely. Much more closely then I was with my pregnancy with Rhys, because it was twins and well... because we knew of it.

Its not right to assume that an early delivery is because the mom did something wrong. 

Avery - Dec 28, 2011 

It is not kind to say it. 

Gwen - Dec 23, 2011

Trust me the mom already blames herself enough, and has to deal with self apposed guilt. I did everything in my power to keep my girls safe and healthy. It took a long time for me to not blame myself, and I still have moments of blaming me. 

My body failed me.

first time sitting up (after giving birth) in two weeks

I didn't fail it. 

And almost all (I can't say all sadly) the moms I met in the NICU would have given everything to have kept their baby(ies) in longer for them to have been healthier. 

Avery - Jan 24, 2012

Gwen - Jan 22, 2012

So assuming premature birth is completely the fault of the mom for not taking care of herself isn't helping the solution, its adding to the problem. The mom needs all the love and support her family and friends can give while she grieves the baby(ies) she didn't have and the guilt of the premature birth.  

If you are a preemie mom/dad have you come across this? How do you deal with it if you have?