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 

"I love you the most"

Rhys is a kind child who loves wholly.

He just told me tonight that he never wants to leave me, that he loves me the most out of anyone ever. He gave me the biggest hug possible when he told me this.

July 2013

He also told me that he is worried about getting a wife because she will come between us, but that he wants to have a baby someday.

I don't know if I should be happy or worried

Cardio update

Avery did extremely well with cardio today, her blood pressure was as low as it has been the last few appointments.

So.... she is off the medication! Well at least for one month. Then they will check it again, but tomorrow will be the first day since she came home from the NICU that we don't have to give her blood pressure medications or meds of any kind. Its crazy!

I did good today!

I'm excited, yet at the same time slightly nervous. I know she is responding well to the meds, and I know that she is expected to be fully off the meds before she is two. So this has always been the goal, its just another adjustment to being normal kids. 

Cardio

No not exercise.

My sweet baby 

Avery has been going in every two weeks to cardiology working on first switching her blood pressure medication and then after that trying to wean her off of it, all the while talking to her nephrologist in Nova Scotia.

She started off and has been on Captopril since before she left the NICU. Before switching the medication she was up to 7ml 3x a day. It had to be refrigerated, and was only good for a month from being mixed. Our fridge looked like a pharmacy with two big glass bottles. She was switched over to a once a day version called Lisinopril and again 7ml. That was back in ... May??? wow.

calm cuddles with mama 

The cardiologist gave her a month switched to the new medication, sent her for blood work which she laughed at and kept asking "what is that?" as each drop of blood was milked from her finger into the vile. Then she went back in, her blood pressure was lower then I had seen it since it first spiked in the NICU, her labs came back great so they lowered her to 5mls once a day of Lisimopril and to come back two weeks later.

my new mellow Avery

Fast forward, her blood pressures are as low again, so they decide to lower her down to 2.5mls of Lisimopril!

Now she is back again tomorrow. Two weeks since the last lowering, now I'm wondering what the result is going to be.

LOVE my glowworm! 

Back when she was on Captopril, you could tell she was getting ready for her next dose up to an hour or two before it was due. She would get angry. Clingy, screamy, and punchy.

mid tantrum 

all this because Gwen was laughing 

it was the end of the world 

Since she was changed over, I haven't experienced that except on the one day we left before her dose was due and didn't get home until 2 hours after it was due (bad mommy forgot to double check with daddy that day and I felt horrible!)

I think that Lisinopril was what she needed. I think that it is controlling her blood pressure well, and hopefully she has as low of a result again. Will they lower her further? I don't know. I guess tomorrow will show what is happening.

18 month appointment & sadness

The girls had their 18 month needles today, and having to talk about all the doctors and health issues is I have to admit depressing.

They have come so far, but having to relive everything that has happened in the last 6-12 months...

June 2012

We are getting close to Gwen's 1 year diagnoses for ANSD. The more I think about AN, the sadder I get recently. I just wish I knew she was going to do well with her HA. Just wish she would develop language well enough, and hear well enough to be the best she can be. 

Gwen - July 2013

I also worry about Avery's paralyzed vocal cord, and people not understanding them. The girls are still random stopped, and they get looks. Avery always gets looks when she gets excited in talking. 

Avery - July 2013

I don't want people looking at them, signaling them out. I know it already happens with the fact that they are twins. But I wish that they wouldn't look because of Gwen's HA, or the looks when Avery talks. 

They are fine.

Avery - July 2013

They are both dealing with disabilities.

Gwen - July 2013

But I refuse to treat them as disabled. 

Avery - July 2013

But I can still be sad.

I will still have days that I blame myself. 

I know it isn't logical, and I know that I didn't do this to them. I know that the alternative to it all is worse. 

If Avery didn't have her PDA surgery when she did, she would have bleed out into her lungs and died. Simple as that. We couldn't have waited for her to be bigger, to wait for the space to be bigger, and for it to be less likely for the nerve to be damaged. 

Avery - Jan 2012

If Gwen wasn't put on a ventilator, she would have died too. We almost lost her several times, too many times to count and we would have if she wasn't ventilated. It damaged her hearing. Her early delivery, low birth weight, jaundice, antibiotic use all damaged her auditory nerve and were all because of being born early. 

Gwen - Jan 2012

These are the realities of the girls. I have to deal with this, somehow. And I will. 

It's just taking sometime.

family

It was our nephews baptism this weekend. We had to drive 1.5 hours to the Church that my sister-in-law was christened in, and by the same priest that married Matthew & I (well, one of three), My brother and sister-in-law (the same one) and baptized all my kids.

Rhys' baptism 

Gwen & Avery's baptism 

Declan's baptism 

Its kinda interesting that he has been so present in our lives, given that I'm not overly religious.

Just too hot

Miss G informed me today was too hot.

no hearing aids mom too hot 

Too hot for hearing aids

its too hot

Too hot to do anything 

let me take my clothes off too mom 

Just too hot

sooooo hot mom 

She spent most of the day screaming at me, throwing a fit (that is why you can see her stork bite so well) Both girls went to bed in a tank top onsie and a fan on for the first time. An hour before bed it was 29C (about 85F) in their bedroom, I put the fan on, and they haven't made a peep within the first 5 mins of going down. 

Earrings & Ear Piercings

So I have been debating getting the girls ears pierced since I found out I was pregnant with girls. Both my mom and MIL have voiced concerns about getting them done to young. Telling me horror stories about babies with bad infections in their ears/neck.

Yes my MIL was a nurse, and saw all those kids who this happened to. So its understandable that she is concerned, my mom also heard from other parents about this happening. That is why I didn't get my ears pierced until I was 5.

5 year old me, don't judge it was the 80's

I know I want to get their ears pierced.

I know that there are pros and cons to getting it done young.

But I also now have the added unknown with Gwen's HA. Every time I search online if she can get her ears pierced I get conflicting responses. I would just want to know if its possible, and if it is if she can't wear her HAs while they are healing. Both of those will effect when we will get them done. I don't think it would be an issue her receiver doesn't go near her lobe, but I'm still curious.

Miss G making the ear piercing decision hard 

Matthew is for getting them pierced, but thinks they need to be 2 or 3 before we do. I'm fine with that. He gets as much say as me. I'm also fine with waiting until they are 5 like I was. It might be a nice thing to do on their 5th birthday, I still remember getting mine done then. But then again, was it on my birthday??? With being born in December, I doubt that my parents would subject themselves to trying to keep earrings in during the winter.


The other thing is, could/should I get Avery's ears pierced at a different time then Gwen? I know that if for some reason Gwen can't get her ears pierced then I can't say no to Avery. But if for some reason we just need to wait for a certain age for Gwen to get the done to help her better, should I wait for that age for Avery too? Or would it just be easier to do the ear care separate?

Avery doesn't seem to have any issues preventing her ear piercing 

So many things to think about....

Any mom's out there who got their little girls ears pierced?

Any with HAs?

What would you do?

Soccer

Rhys started soccer last week. He only has had one session due to weather but he loves it!

Gwen watching big brother

Avery wanted to get up

#4 running 

Just caught this as he ran past 

And he is good at it, which makes him like it more