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.

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!

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!


  

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

Random news from the US and our Birthday/ Sci-Fi Weekend

So I was reading an article on a current case in the States about little Sammy Nikolayev being removed from his parents care because they wanted to get a second medical opinion. It is sad to think about anyone loosing their child because they are trying to do what is best for them.

If you want more info click here.

Sci-Fi On the Rock 7

Sci-Fi On the Rock 7 this past weekend, busy but fun with all the kiddos. I have been going since the beginning, even last year when I had to run back and forth to the hospital to BF the girls.

Sci- Fi On the Rock 1

Sci-Fi On the Rock 2 (Rhys helped with the costume)

Sci-Fi On the Rock 4 (not sure where my pic of 3 is)

Sci-Fi On the Rock 5

Sci-Fi On the Rock 6

Gwen & Avery at Sci-Fi On the Rock 7 in costume at a panel 

We had a busy weekend, Rhys' 5th birthday was a success for him. He had fun! 

some gifts and loot boxes 

all the boxes put together and stacked 

Rhys 

"It's me Mario!"

Opening gifts

how is this three years ago???

he loves the Easter bunny, and was only 23 months old... Now he's only 18 days shy of 5 years old. Thanks Auntie Mae for recording this!

So, are you done?

I have been asked this question 6 times in the last 12 hours.

I was at the airport last night picking up my in-laws and saw one of my NICU mama friends with her twin girls (kids  # 3 & # 4) and she asked after talking for some time "so are you done?"

My 3 hands with my rings at 2 months

Today, Gwen had a physio appointment. Her physio therapist asked at the end of the appointment (a mother of 3 herself) "so are you done?"

Leaving physio I met 3 other NICU mama's and a nurse at different times walking out of the hospital. During each conversation "so, are you done?"

First pic of all three together 

Each time, I know what they are asking without them finishing the question. Are you done having kids? its a complex question for a preemie parent. Most I talk to say "never again!" they never want to risk reliving the NICU. Never want to risk loosing a baby. Never want to go through the roller-coaster of it all. I too was worried about the possibility of reliving the NICU, but mostly I was worried about what another NICU stay would do to my kids. Rhys had a really hard time with being away from his sisters for so long. And eventually me too, I always tried to visit the girls while he was at daycare or asleep but eventually when I started bf I needed to spend most of my time at the hospital. It would be a lot harder to leave 3 kids at home each day or if I needed bedrest again... its hard to think about. DH would need to be able to drive. That would make it easier for the family regardless of bedrest/NICU or nothing. But I have realized that even with the possibility of it all happening again, I will be followed a lot closer that we will discover the issue before it gets bad.

first pic home of all three

Today however I realized that the question has changed. Before today I was asked "you are done, right?" see the difference? It is not really a question. They assumed that due to the fact that I had three kids, due to the fact that I had twins, due to the fact that they were preemies, due to the fact that we spent so much time in/at the hospital, whatever, that we wouldn't want anymore kids. And I think that question was more upsetting. Why is it that you think that we can't handle it. Its our life. Our family. I think now that we are being asked instead "are you done?" is an indication that people are realizing that we are handling it. That or that the girls are now old enough to ask about another baby...

So, are we done?

I honestly don't know.

We always said we wanted at least three, and we would reevaluate. We tried to work out if there would be # 4 by the girls first birthday but we still weren't there emotionally.

I'm happy with my three. Extremely so. I feel more calm and at peace as a mother with my three then I ever did with my one. I am more at ease taking care of many then few. I am calm and happy with the dynamic of our family.

Would I be sad if # 4 happened? No, never. Would I be sad if 4 doesn't happen? No, not really?

pic for Fathers day

If # 4 would happen, he/she will have to wait. We owe a little bit of money, not much other then the car and the house, but we would want it all payed off (except the house/car) before # 4. If I get a part time job that works around DH's schedule, it would be payed off and we would have a nice bit of savings too in a year. DH would need his licence too, I'm not being the solo driver for a family of 6. 

my three this summer past

The other side of the coin is getting pregnant with # 4. It took 2 years for the girls, the older I get the worse that can. Will I want to relive the newborn stage in 3-4 years or more? Or adding another personality to our working dynamic, what happens if # 4 trows the balance off?

Christmas pic of my three

I know that I am not ready to say "no never again" but will I be then?

It is hard. It is a hard decision to make and we are not ready to make it.

So if you want to ask, "are you done?" that is the answer.

Happy Due Date to you!

April 2, 2012 was the girls due date, a whole 103 days after they were born.

I remember singing "happy due date to you, happy due date to you, happy due date dear Gwen/Avery, happy due date to you" at each of their bedsides.

Gwen - April 2, 2012

Gwen - March 30, 2013

Avery - April 2, 2012

Avery - March 30, 2013

 Happy one year adjusted to my little 15 month old's! Mommy loves you so much

Gwen, Mommy & Avery - March 30, 2013

* Disclaimer- Gwen had here HA in, but it was too loud/crowded/messy at egg painting to keep them in, just not in these pics. 4 one year old's with water based egg dye is not conducive to HA ;) *