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.

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!

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.

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!

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?

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! 

Vacations, Walking, Appointments, Regatta oh my!

Life has been busy.

What, really, you ask? Life is busy with three kids?

I feel like this is how I'm starting lots of blog posts recently.

Since I last posted the girls had their 18/19 month assessment at the PPP on July 25th.  And they got assessed at 18/19 so we don't have to go back until they are 3 year olds!!!! You won't believe how excited I was to finally get the "they are behaving like their actual age, not their adjusted age"

After the appointment we went on a mini vacation with my parents and in-laws. The kids loved it and so did we! On the second day Gwen decided that all she needed to walk was an empty 4L bottle of water in her hand and all the family to see her. Since then she hasn't stopped!

While on vacation Matthew and I marked our 10 year dating anniversary on the 27th. We didn't do too much because we were running around enjoying our vacation so yesterday we went to lunch with the girls to acknowledge it.

three little monkeys on the top bunk 

Also during the vacation we were able to spend some alone with Rhys and drive to the Aviation museum and swing by the silent witness memorial. Rhys loved the special attention and being the big boy doing big boy things, but he also insisted that we buy somethings for the girls while we were there.

Captain calling 

flight simulator 

Look how big the gun is dad!

Looking at the different planes and "all the mechanical pieces"

plane going though the museum 

silent witness

Daddy and Rhys taking in the memorial 

We also went to the touch tank in Terra Nova Park. Avery tried to climb into it she loved it that much

Avery is excited!

Trying to get into the tank!!!!

Touching it all 

Mom look what I did!!!!

After the vacation there have been a bunch of appointments. Avery doesn't have to see ENT for 9 months. Gwen's AVT is happy with her word count. They will be getting their speech therapy appointments in the next few months and next week we get the big cardio appointment to see if Avery is to stay off her meds and to see if the pressures in Gwen's heart have lowered like expected.

This past week we also got to go down to the Royal St. John's Regatta. The kids loved it and this is the girls second one (third if we count their time in-utero)

Regatta 2013 (Avery & Gwen) 

Regatta 2012 (Gwen & Avery) 

I know there is more I want to talk about but I have two baby girls who are climbing all over me! Back to life

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

Universal Healthcare

Everyday I am reminded how lucky I/we are to live in the country that we do.

Canada is a good place, yes we have our issues with government. But who doesn't??? I might disagree with what is going on politically, but there are great things about our country too. No war here, we don't have natural disasters here in Newfoundland (well except for that Tsunami, but that was back in 1929) One thing I'm most thankful for is universal healthcare.

Due to not knowing about Rhys until so late in my pregnancy, I wouldn't have been able to pay for a hospital delivery (as it was my in-laws were kind enough to pay for the private room that I couldn't afford) because I had just switched jobs two months before he was born and my insurance never kicked in in time.

last belly shot with Rhys

How could I in 4 weeks save enough for a hospital delivery on top of getting ready for a new baby? I was thankful for the family support, and the size of our families for the support so that we had everything we needed in those 4 weeks, but I couldn't expect them to foot a hospital bill on top of that. Matthew was in school full time and working full time. He was already working on next to no sleep, using 20 hours a day between school and work, he couldn't work overtime for more money to take care of that. And I was taken off work a week and a half before he was born due to his position in my pelvis.  

little Ninja baby

I don't know how anyone with a Ninja baby can do it. 

With the girls, we had two years of trying so yes we were saving for them (not knowing it was going to be twins) I was seeing my OBGYN monthly, and on meds for 3 months. I had blood work done 4 times a month for 9 months. That would have eaten into our savings if each was out of our pocket.

Matthew had just switched positions so while I was pregnant I did have to pay for my morning sickness meds. I couldn't believe how expensive they were for only one month but they were worth every penny to be able to care for Rhys during that time. But would it have been doable with all the appointments? During that same time I was seeing my OBGYN and she sent me for an early ultrasound due to bleeding, and for a lot of blood work.

the girls first ultrasound - August 2011

And then bedrest...

Gwen

Avery

Because it was deemed a medical necessity I was given a private room when I wasn't in the case room. But due to a mix-up I was given the bill for it one month after the girls were born. $1500 just for the room. Thankfully it was resolved, but if I had to pay for all the procedures, tests, scans, drugs I don't know if I could have faced that on top of the stress of bedrest.

The NICU... I have met too many parents of Micro preemies who had to face each decision with a price tag. And even if they didn't have to worry about it, the hospital did and would send the babies home as soon as possible. My girls would not have been in hospital as long as they were. Gwen would have come home on oxygen, Avery would have come home before Gwen, and we wouldn't have caught her high blood pressure until a lot later.

level three in the NICU for the sickest babies 

Gwen's first room in the NICU

Avery's first room

Avery's bed space on Christmas 2011 

Gwen's bed space Christmas 2011 

We have gotten a MCP audit once for one of Avery's specialists appointments. $100 is what MCP was charged for for taking her blood pressure, weighing her, going over her dose and spending a grand total of 10 mins with the doctor because I had a lot of questions.

The girls have had well over 300 appointments now since they have come home. That's $30 000, just in appointments.

$30 000.

In appointments.

I know that their bed spaces in the NICU (just the bed space) was $2000 a day. That's not equipment, drugs, specialists, nurses, etc.

$512 000 in the cost of their space alone.

Gwen's hearing aids were ~$7000.

Thank goodness for universal healthcare, because I know we would have had to declare bankruptcy by now without it.

I don't have to choose between health, and food.

My biggest wish is that healthcare was treated like a human right, not something for the privileged.

But that is just my opinion, and yes there are some downsides to it.

No system is perfect.

We might have longer wait times for non-emergencies, but I have seen how fast the system can work in emergencies in the NICU. So I will deal with the longer waits, because it means someone who is sicker is being seen to first. And it means that I don't have to worry about not affording to live a life outside the hospital.

Because that is just as important.

Avery & Gwen