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. 

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! 

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 

preemie parent problems

*Warning early pics of the twins ahead*

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

Unkie Dew teaching the babies the raptor screech  

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

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

Avery - Dec 28, 2011 

It is not kind to say it. 

Gwen - Dec 23, 2011

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

My body failed me.

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

I didn't fail it. 

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

Avery - Jan 24, 2012

Gwen - Jan 22, 2012

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

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

Overnight

Matthew called me earlier today asking if I was okay with him working an overnight this Sunday.

He has only done two other overnight shifts since the girls have been born, and that was back when they were still in the hospital.

I couldn't sleep those nights.

I haven't been able to sleep by myself since bedrest.

the couch bed/chair in the case room that family slept on with me for 14 days

Not being next to someone while you sleep, makes you feel like you are back in the hospital again. Brings you back to those days in the hospital. The unknown, the fear, the terror of it all. I wasn't left alone, but I was by myself in bed. Head down. 14 days...

sitting up for the fist time in two weeks, just after giving birth to the girls - Dec 21, 2011

Brings back the emotions.

But its been over a year, my kids are home and safe. I can fall asleep before Matthew comes to bed now.

I'll be fine.

I hope.

But the only way to know is to try.

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.

Working out

So I've been thinking of working out for some time, after having the girls I dropped down to "tiny" sized.

Then I had Mirena put in (a long story for a latter day...) and put on the water weight. I ballooned up to larger then I was before getting pregnant with the girls. I just got it removed at the end of Jan and lost ~20lbs since then.

I want to be healthy and active for my kids, I don't need to be "tiny" sized but active yes.

I also have to work on my muscle development, they suffered during the two weeks I was on bedrest. You wouldn't believe how much muscle mass I lost in such a short amount of time. It took 10 months before stairs didn't hurt my knees and then the moment winter hit they hurt again.

I'm more active and in better shape then I was after Rhys.

Post Rhys, 7 months before pregnancy with the Girls 

And I know this because I started working out a week ago... and last night I got just dance 4 which has a nice work out function. And it also is just a nice getting you active.

Here's hoping I can be not "tiny" sized, but my perfect size.

before any weight was lost, with Gwen