The worst day...

Dec 8, 2011

I panic thinking of it, it was the date I went into hospital and was placed on bedrest.

It was the date I was told the girls only had a 10% chance of surviving the birth.

5% chance of surviving.

only a 2% chance of being "intact".

I was told I could just stand up, that because it was before 24 weeks they were not expecting survival.




It was the beginning of my nightmare that I couldn't wake from



I cried for 48 hours. Heard every scary statistic. Knew too much. Was reminded again and again what I would need to do "when you get pregnant next time" as if the girls were already gone...

Talking of not only my mortality to try and wrap my brain around were I would want my babies placed to rest if they didn't make it.

I spent 14 days on my head fighting to keep the girls inside, ignoring my own health risks and focusing just on them. Quickly I realized that my crying might be doing more harm, so I pushed back my fears, and focused on them.

Fighting for every steroid, every antibiotic, refusing to move unless I was made to. And then I passed the 24 week mark and I had more support in our fight.


I thought I was ready for this day, that I was over my sadness. The girls are fine, and doing well. But the thought of bedrest, of Dec 8th makes me sad.

I hope next year will be better.


I have been told that it was the day that makes people proud of me. That I became a supermom.

I didn't see it that way.

I just did what I believe any mom would have done if given the chance.

So today I have to remind myself that at the end I got my beautiful baby girls, and remind myself once again that everyone is safe, alive, and as healthy as they can be.

Gwen

Avery

It doesn't help that there is a lot going on right now that I can't get into yet, on top of my normal issues with Dec 8th. 

So I'm sorry if I don't seem very festive. I'm sorry if I might not smile as much as I normally do. I'm working through this and trying not to let my kids notice. 

30th birthday prep

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

home a week 

Nearing going home from the NICU 

going home day 

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

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

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

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

you can tell how tiny he was next to her

two of them on other side of me in 2012 he has caught up in size

World Prematurity Day

Today is world prematurity day, and I commemorate it with my babies

This video was done at the half way mark of the girls NICU stay...




Just shy of two years has changed a lot in them. I can't believe how much they have changed

But I'm still in it

Between starting appointments up again, and gathering pictures for Gwen's scrapbook I've been rather reflective. I'm sad that Avery now has to restart physio because it feels as if it is a step backward. But I can't be too sad because I don't know if she will need beyond the next appointment. And honestly it is better to get her checked out then to leave it be and not know.

I heard someone recently from some 9/11 documentary or something that on the day he was freaking out and a police officer said "don't worry you are just suffering from post traumatic stress" and he responded "post traumatic, but we are still in the trauma" or something to that effect

Now how does that relate to me?

Not much for me personally, but I do know that many parents that live through the NICU suffer from P.T.S.D.

And honestly I can understand why. You go day by day, moment by moment not knowing if your child is going to die. Alarms startle you wondering if this is their last struggle and if they are going to give in.

Avery

That is unbearably hard.

I thankfully had a great nurse say to me in the first day to ignore it all. They do. Look at their colour and you will know how they are really doing, sometimes the monitors are overly sensitive or wrong and the baby is on an upswing. I quickly could tell you if I should really be worried based on their colour. To this day if one of them is "off" I know by looking at them. I don't need a thermometer, I can tell that Gwen turns a purplely blue and Avery gets to a translucent gray.

Gwen's space 

Eventually for me the sounds of the NICU were calming, it reminded me that the girls were where they needed to be and in capable hands.

But I know other parents found it stressful. Matthew was rarely comfortable in level III. Without a doubt he would be there for 10 mins max and need to rush to the washroom being gone for 15+ mins. It was an upsetting place for him, I teased him that it was his subconscious reacting to being back in the NICU.

Matthew & Gwen

Other parents would get a look of panic at every alarm, and given that there were 8 babies in level III between the two rooms and sometimes 5+ things that could alarm on each baby it was rarely quiet.

Its constant noise. I've heard it liked to a battle field. The non-stop noise, babies fighting for their lives along side of their nurses, doctors, and specialists. As with someone who goes through a war, they are more prone to P.T.S.D.

Avery

And it follows you

I'm still in in per say, were is the post?

All of the appointments.

All of the health issues.

Always having to do things differently because they were early.

I know how lucky we all are. The girls are behaving like normal 20 month old's, there are few lingering health issues, and no one has P.T.S.D.

But a break of 4 weeks from appointments is not the norm. I shouldn't be recognized by hospital parking staff. They shouldn't know my kids names.

We are still in the NICU.

our view from our care by parent room in the NICU 

Not physically, but mentally. We have to isolate ourselves in cold and flu season, at least for another year until they are on their third. We have to memorize countless procedures, appointments, specialists, and health issues.

I can only imagine how hard it is for the parents who suffer from P.T.S.D. Constantly having to relive it.

Eventually this too will end, and we are getting discharged from appointments and specialists. But for now we are still in it.

Denial?

Lately in conversation with strangers when asked how old the girls are I always say "they are x months old, but they were a bit early"

My mother-in-law has heard me say this and each time I say it in her presence she corrects me saying "they were not a "bit" early they were 15 weeks early" And if she gets asked their age she always says "they are x months old but were 15 weeks early"

I can understand were she is coming from, the girls were more then a "bit" early. They have grown well and are doing awesome given what they have gone through and all they have overcome.

But...

I love sharing the info, I do. But part of me wants to try to, not forget it, but get past the NICU the premature delivery. Of course I will share my info with others, help people going through the same thing, phrase my girls for overcoming more in their short lives then most will in their lives.

At the same time I don't want to forget.

I can't.

But in trying to distance us from it to strangers am I doing the girls a disservice? Should I just say they were 15 weeks early to everyone who asks?

I realized that I had believed that it was only 14 days before held Gwen, and had be believing that for some time. That isn't true. I am getting pictures of the girls organized to start their scrapbook and have realized I held Avery at 15 days and Gwen was 23 days old.

15 & 23 days before I could hold them.

Avery- Jan 5, 2012

Gwen - Jan 13, 2012

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

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 

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.