150!

We've made it to 150 days, and in good news, mama is not in a padded cell as promised!

Tomorrow the boys are 5 months old. How fitting for our little fools on April Fools Day!

Positive Thoughts Please

Remember that whole bit about "this is my blog, I can talk about whatever I want"? Well here goes, this one isn't about our boys (who are doing great by the way).

There are a couple of families in our life going through some stuff right now, requiring some positive energy sent their way. Both have baby girls born within weeks of Asher and Nolan. One, a 26 week multiple birth like ours, is still hospitalized and having complications. The other, an otherwise very healthy full term baby, is at BC Childrens having some potentially scary tests done.

Is it too much to ask you to send some positive energy their way? I feel that even by you reading this, someone in the universe knows who I'm talking about and will send them the good stuff.

Mamas J and S - thinking of you and your babes by the minute -xo-

The Rules

This is a post that is awkward to write but also very exciting because it means we're preparing everyone for bringing the boys home in the coming weeks (we hope!).

Basically, the boys' immune systems are nowhere near where they should be, even for their corrected age. Their lungs are incredibly delicate, and even the slightest cold for you or me will land them back in the hospital. And then there is the huge issue of reflux, which will cause them endless problems if they aren't positioned correctly. So I realize this all may sound a bit harsh and militant, but when we have the boys at home we need to ask you to please do the following if you plan on coming to visit them:

• Don't come if you're sick. This should be obvious I would hope. No coughs or sniffles of any sort and certainly no gastro bugs. Please remain symptom free for 5 days. And if you've offered to help out with Rio or anything else, we'd rather (and appreciate) you just cancel.
• Don't come if anyone in your house is sick. Your husband/wife/kids, etc, should all be symptom free for 5 days before you come visit. And if you have been in contact with anyone else notably sick, please avoid us too. The last thing we want to hear in passing conversation is that you spent yesterday with your niece who has bronchitis.
• Wash your hands when you arrive and as necessary throughout your stay. And I should hope I don't need to tell you that hand washing after using the bathroom is not optional ;)
• We are trying to set an example for Rio to not kiss them anywhere near the mouth or touch them on the face. Please set the same example.
• If you're holding them, please be very aware of their body position and prepare to be reminded of how they need to be held. They will never (and I truly mean never) be laid flat except for diaper changes. They will sleep, eat, play and do any other manner of baby things on an angle, and after being fed they need to be kept completely upright. If they aren't kept elevated they will throw up. Not only is it a mess but it is incredibly painful for them (and painful for me to watch) when they are refluxing. 
• In addition to reflux, a big scary threat is that they have an apnea (stop breathing) if their head is slumped onto their chest. Although they have come very far in their ability to breathe, if they're not in the ideal position we don't trust them quite yet. No one wants to see blue babies so please be sure their airway is always open.
• Compliment the big sister on what an amazing job she is doing helping to take care of her brothers. She has been a superstar so far, and we'd like that to continue when the boys get home and she realizes just how much of mom and dad's attention they are going to steal 24/7, not just at the hospital.
• Please call first and please keep your visit short. Not only are these babies fragile to germs, they are also not used to a lot of stimulus yet. Numerous visitors in a day will be too exhausting for them. (And not to mention their sleep deprived parents who are going from 1 kid at home to 3 kids at home!)
• Please be prepared to meet nervous, anxious, uptight parents when you see us. These are not the parents that prided ourselves on how laid back we were when we had a healthy, full term baby almost four years ago. Obviously we're incredibly paranoid this time around, rightfully so. 
• Feel free to ask questions. A lot of this might seem complicated to outsiders but this is our new life so those of you around us need to be comfortable being with us and all the gear and rules required.

We thank you in advance for respecting our wishes. We understand how excited all of you must be to meet them but you must also know how sterile and non stressful we need to keep our home for the sake of the boys. We don't expect you to remember every bit of this but we were hoping this would help to get the word out so people understand how delicate these little creatures are. I am guessing the 5 months in hospital has made it pretty apparent they're not your average babies, but you can never be too sure!

Resting up (as always) to come home

Helping out already

You know you've been there too long...

...when you know where they hide the spare toilet paper in the bathroom nearest the NICU.
...when you can instruct the nurses on which parts go with which breast pumps.
...when a baby born three months ago is going home and you think to yourself "ALREADY??? How's she busting out of here so quickly?"
...when you have spent $1.60 on a large coffee at Tim Hortons more times than you care to count.
...when you keep rolling up the rim of said T-Hos coffee, expecting to win a car for your troubles, never ceasing to be angry when you're told to play again.
...when you have entered the hospital via the morgue entrance so many times that you have seen at least a dozen hearses and even a few bodies (covered!).
...when you know exactly how many stairs it is to the third floor (54) and yet you still count them every single time.

Sigh.

It's time to go home. Really, really time.

Blue Eyes

In another positive advancement, yesterday the boys' eyes were essentially given a clean bill of health. I say essentially, because in the words of our brilliant opthamologist, Asher's eyes are "weird".

Since quite early on, the boys have been followed for risk of ROP* - retinopathy of prematurity. Premature babies' eyes have quite a high risk of abnormal development outside the womb so they stay on top of their development to spot any problems as they are arising. At each checkup the boys have gone back and forth between no problems whatsoever, and minimal problems. We haven't spent any time worrying because those minimal problems may result in glasses at worst. Nothing serious and we've obviously had a lot more pertinent things to deal with.

I was there last night when they got examined again and got to have a chat with the doctor. Basically, he has only been following them closely in the past few weeks (post-term) because Asher's blood vessels were looking a bit corkscrewed, which is a sign of ROP. However, he didn't really know what to make of it because he wasn't showing any signs of retinal detachment (the worst case scenario) and his eyes were continuing to develop. Last night he decided that the boys' eyes were both far enough developed that they were beyond any great risk, and that Asher's "weird" corkscrewy vascularization was likely just the way Asher's eyes looked. Yet another example of how Asher chooses to never fit the mold!

So not only was the checkup good news, the even more exciting news was that the doctor asked me to book a follow up in 6 weeks. In his office. In his office implies that in six weeks we are home, not still getting examined in hospital. Writing an appointment on the calendar, assuming they are home to go to it, was one of the most exciting things EVER. Sure, something could happen and they could still be in the hospital and we might need to reschedule, but at this point I am going to bask in the glory of our first real plan for them to come home. Feels good!

*Trivia - Stevie Wonder was a premature baby and is blind from ROP.

Corrected Age

I have found over the past weeks as the boys have been getting older and stronger, I have been asked repeatedly "What are they doing?". The first few times I was like "Ummmm, being babies??" not really understanding that people were wondering how they are developing. When I then answer that they are lying there, staring and batting at their mobile on a good day, I can pretty much read the thoughts: "Is that normal that that's all they're doing?".

In terms of specific developmental milestones, for the next 2-3 years the boys will get measured based on their corrected age as opposed to their chronological age. Chronologically, the boys are nearly 5 months old. At 5 months Rio was rolling over both ways, shoving hands and feet (and everything else) into her mouth, and even sitting up. These boys are nowhere near any of these things, nor should they be, because their corrected age is only 6 weeks. Their corrected age is calculated from their due date, so how old they would be if they were born at term. Just because they were born more than 3 months early, they are not expected to reach any of their milestones any earlier than they would have if they were on time. So based on their corrected age, they are behaving like 6 weekers. They are making eye contact, they are cooing, they are reaching out, and they have great neck strength. 

Although we would like to think they are going to reach all of their milestones when they are at the appropriate corrected age, it is very likely that they might be even slower than that. So for instance, even when they are 6 months corrected  (9 months chronological), they may not be sitting. And that's ok. They are going to do things as they need to do them and it is up to the team of specialists that will be following them to tell us if there is a problem. I am already preparing for their muscle strength to be a bit lacking since they are still in the hospital and spending a lot more time in bed than they would if they were at home with us like other 6 weekers. 

So while we appreciate that everyone wants the very best for the boys and their health and development, please don't answer with an "Oh..." or a "Really?" or an "Is that ok?" when you find out they don't do things on the schedule that the rest of the world thinks is normal. In-their-own-damn-time is the new normal in this house. Normal is so passé...

O Canada

I am a hugely patriotic Canadian. I love this country for its landscape and its amazing people. Clearly most of the rest of Canada loves itself as much as I do, given the very public display of affection we had for ourselves during the recent Olympics. This post however is not a tribute to Canada in general, but a couple of specific things that most Canadians, myself until very recently, take quite for granted: maternity leave and universal healthcare.

1. Mat leave - A year off! A whole year! I've never really pondered how amazing that is until going through this experience with the boys and watching a good chunk of that year pass me by, still at the hospital. Now don't get me wrong, I still think the pay sucks, but at least we are given the option to leave our jobs and come back a year later. I can't even imagine being back at work now, or soon for that matter. The boys and I need some quality time together once they get home, not only for all the loves and cuddles we've missed out on, but also for the important stuff like learning to breast feed so I can give up the damn pump! Now let's just work on the ruling that allows dads of twins to get a year off too ;)

2. Health care - I, probably like most of you, have been known to complain about our healthcare system. I mean come on, do you really want to wait months, or even years for diagnostic tests or surgeries? No, that part of it is horrible and I will maintain that it's horrible, only getting worse. But you know what, at least those tests, surgeries and related hospital stays are essentially FREE, no matter who you are and how much or how little money you make. Having seen the inner workings of the NICU for a verrrry long time now, I see how amazing our healthcare system has been for our boys. Thankfully we are lucky in Victoria to have one of the best NICUs in the country, staffed with some of the best neos and nurses I could have asked for. Any time the boys have had the slightest problem, there has never been an issue with ordering a multitude of tests and treatments to get to the bottom of it. We also have confidence that the boys will not be discharged until they are fully and completely ready to go home and make it without the help of the watchful eyes of the medical staff and the monitors. We, the Trousdells, are costing our healthcare system roughly $2,000,000 based on a minimum of 150 days @ approximately $6000/day each for the boys, plus my two surgeries and hospital stays. TWO MILLION DOLLARS. That doesn't factor in all the boys medications and tests. What if we were handed even a small part of that bill?! I cannot even imagine. Or what if our insurance only covered certain tests and procedures, so the boys didn't get the best possible care available to them? This situation is hard enough on our family but I can't begin to comprehend the stress involved if we were faced with any financial woes required to save our boys' lives. Our hard earned tax dollars well spent if you ask me.

So again, how can we not feel lucky, blessed, and like life could be much, much worse if we didn't live in the true north strong and free...

$2 mill worth of cute. Thanks tax payers!

The Camera Survived!

A few new pics with the dried out camera.

Asher milk drunk

Nolan zzzzzz

Asher rockin the bouncy chair

Cuddles with Dad

Weekend Update

All is well after a night on Pender Island for Jordan, Rio and me. It was fun and relaxing and as always we were spoiled rotten by our wonderful friends. It was nice for Rio to have two days that did not revolve around the brothers and nice for Jordan and I to share some laughs with friends. The boys did great in our absence and are continuing to grow to epic proportions, with Nolan at 10 lbs 6 oz and Asher at 8 lbs 12 oz.

Nolan is doing much better with the reflux now that he is on the wedge, but is still having a few small bradys every day. Asher went four days without a brady which is amazing, although he had two already today and it concerns me it is because his caffeine is being weaned. We are terrified if he can't be weaned because then the neurologist is involved and that could mean bad news. We'll cross that bridge when we come to it though...

Otherwise things are well. We are using the boys' extended hospital stay to get more stuff done around the house, so Jordan is currently working hard to install a new ceiling in their room (finally we bid farewell to the nasty sky light!). I unfortunately can't capture any of his progress in photos because I came home from the hospital today to find our camera bobbing in water in the bottom of my purse care of my water bottle that somehow opened. Not good news for the camera. Ouch. I'm hoping it dries out and magically works but at this point it's not looking good. So if there's no new pics of the boys for a while that explains it. Just imagine fat and cute.

Discharge Planning

On Wednesday we had a much needed and appreciated "discharge planning meeting" to talk with all the key players about what it's going to take to get the boys home. Although discharge is certainly not on the horizon yet, it felt good to review all the progress the boys have made and where we go from here.

Nolan's worst enemy is the reflux. Pretty much all of his desats and bradys are during or after feeds. In good news however, the higher angle he is now lying on with Asher in the crib seems to be helping him. Our pediatrician will re-evaluate on Monday and if he isn't markedly improved over the week since he was put on the wedge, she will introduce further upper GI testing and look at the possibility of surgery if he can't just outgrow this problem on his own.

Asher's main issue is his ongoing need for caffeine to help his respiratory drive. Although his reflux is still present and painful he seems to handle it better than Nolan and it doesn't seem to be such a stumbling block for homecoming. Asher has very few desats and bradys now; however that is possibly because he is still on caffeine. Our pediatrician is slowly starting to wean him from the caffeine over the next week or so and if his episodes start up again she will involve the neurologist to see what is going on in his brain to cause the respiratory drive to not be functioning as it should. There is far too much risk in sending Asher home on caffeine because the result of weaning him could be very, very bad if he were to plummet outside of the hospital. Therefore, figuring out why he still needs it and how to get him off of it are mandatory for getting him home.

In addition to going through those major items for each of them (and some others for Asher that don't seem to be preventing homecoming - for example his hydrocele, umbilical hernia and slightly open heart duct) we discussed daily life when they come home. It is going to be overwhelming to say the least. Let's not forget the sole fact that we are bringing home twins. That is overwhelming enough! But then throw in the added stress that comes with their lengthy list of medications and all the retrofitting that will need to happen to allow them to partake in normal baby activities. Their crib will need a wedge and a sling; their bouncy chairs and swing need the seats reinforced to keep them from slumping; they'll need to go on a wedge to lie on their activity mats and tummy time will require rolls under them to keep their trunks high. Ughhhh. All of this for the reflux! And then there's the endless pediatrician, NICU followup, infant development and specialist appointments to take them to. And finally, and probably most importantly, there's the act of feeding them without having them either turn blue or throw up everything as quickly as they've eaten it. It is an exact science that deserves a post on its own (which I will get to at some point). Don't get me wrong, when the time comes to bring them home we will be thrilled, but I am starting to wonder if it's actually going to be any easier??

Some very positive things did come out of this meeting though. One is that Jordan and I are now allowed to feed the boys off monitor. This means that our doctor has enough confidence in us to know that we see bradys and desats related to feeding coming by watching the boys and their cues, not the monitors. Secondly, as long as it is not for a feed we are allowed to take the boys to the family room, again off monitor, to hang out and be a bit more relaxed. Both big steps in the right direction.

I will leave you with some more shots of the boys in their new home. Asher is completely in love with Nolan; Nolan is not so sure.

Their back corner "private room" complete with their own personal iPod dock to help enhance their brains with classical music and Metallica lullabies.

Back to Level 1

Yesterday the boys moved back to level 1. They actually have a pretty good setup in the back overflow room, all by themselves. Very private and very comfortable, so we're hoping they'll be able to keep us back there until discharge. Additionally, the boys are finally co-bedding again! Their pediatrician and the occupational therapist worked out a solution so that both boys are on a 30 degree angle wedge to help with their reflux. They are "strapped in" so to speak via individual slings on the wedge and we can control how close together we want them to be. So far, they seem very happy (as is mom!). If the boys do well on the wedge they will send it home with us.

Lastly, for those of you that haven't seen this on facebook, here is our first family photo without any monitors or oxygen attached. This was actually a few weeks ago when we were in level 1 last time and we got to hang out in the family room with "E" and parents before they went home.

We don't look very happy do we? ;) Best. Day. Ever.

Watching the olympics with Asher

Love for Nolan

125!

The boys are 125 days old today. When I posted on their 100 day birthday and said I would be in a padded cell on day 150, I never contemplated how close 150 days really was. At this rate, 150 is right around the corner and we will likely still be in the NICU. However on day 125 the boys are doing great so there is no fretting around here about how much time has passed in the hospital, or about how much more is going to pass before we take them home. As I like to do for myself as much as you, here is another reminder of the progress that has been made in the past 125 days: 

Asher - day 3, less than 2 lbs

Asher - day 125, 8 lbs 3 oz

Nolan - day 3, less than 2 lbs

Nolan - day 125, 9 lbs 8 oz

Now eating like stars and not requiring oxygen at any time of day even if they're tired. Apneas and bradys have also decreased significantly for both boys. We are getting there....clearly "slow and steady wins the race" is the motto for these two. So thanks wee ones (not so "wee" anymore), for giving us 200% more love in our lives than we had 125 days ago. 

Ode to a Big Sister

Asher, Nolan, Nolan, Asher: this is what I talk about all day, every day. And who do I talk about Asher and Nolan with, and in front of, almost all the time? Big sister. Does she complain about it? Never.

This little girl is a star. Any meltdowns she has seem to be unrelated to the fact that her life has been turned upside down by the entrance of "the brothers" and the attention they are stealing from everyone near and dear to her. When she is difficult it is because she is three years old and not because she resents any of us.

She accompanies us to the hospital several times a week, often getting scolded for stepping on cords, pushing chairs, being rough with the boys, touching her nose then touching the boys, touching the floor then touching the boys, talking too loudly, or dancing too wildly - all things totally natural to a three year old and completely acceptable outside of the hospital. But unfortunately in that environment she is a bull in a china shop. We get frustrated and we sigh. A lot.

Magically, she doesn't seem to get frustrated. For 123 days she has remained thrilled with her brothers. She loves them to the ends of the earth and back. She never questions when they are coming home, only knowing that when they are well enough they will. She doesn't get upset when she has to wash her hands approximately 40 times per visit, or when she has the sniffles and has to wear a mask. It's only upsetting if I won't draw a happy face on the mask in the colour scheme she has requested.

On days that things are good, she shares in our joy. On days that things are bad, she makes life tolerable. She makes us laugh, she keeps us on our toes, and when she is misbehaving like any three year old would, she reminds us that we are just a normal family in spite of all that's going on around us. On those very few days when she cries because she doesn't want me to go to the hospital, my heart shatters. But I know that when I walk in the door I will be greeted with hugs, smiles and a very excited "Did the brothers have a good day?" as always. All three of our kids have proven a thousand times over just how resilient children are.

So although she often gets left out of this blog, Rio deserves a whole lot of praise. Without her humour, sensitivity, empathy and love that knows no bounds, we would not be half the parents that we are. Asher and Nolan, get ready - you have one incredibly special sister looking out for you. Just a heads up though, that's one temper you don't want to mess with!

Princess-Super Hero-Dinosaur Slayer

Lucky

Just when we get caught up in feeling frustrated about how the boys are never coming home and how long we have been doing this, I seem to have an epiphany and realize how truly lucky we are. Yes, the boys are still in hospital and have to progress a fair bit before they come home, but wow, have they come far. As I sat holding two babies with a combined weight of 17 lbs, I couldn't help but think about how much my arms ached as compared to holding 2 lb babies whose arms and legs were so thin and without muscle tone that I could barely feel them lying against my skin. Today they were writhing and squirming and snorting and cooing and making their presence very known. When I switched positions and suddenly Nolan was able to see Asher on my shoulder the look on his face was priceless. His eyes got huge for a second, then suddenly he became very, very serious. It was as if he was looking at Asher and saying "Who the hell are you and why am I sharing my mom with you?".

So while the road is still long and bumpy no doubt,  I look at these two beautiful, chubby little faces, and I can't help but be thankful for the progress we've made.

4 months old

The boys are 4 months old today. These past 120 days have both dragged and sped by. It is a happy day because they are doing so much better than they were 4 months ago, but at the same time a sad day because I was never prepared for this journey to stretch into March. February 28 I was prepared for but not March. And certainly not April, which I am sure is best case scenario at this point.

But nonetheless here we are. Happy birthday to the cutest, strongest, bravest, 4 month old identical twin boys to ever grace our lives.