Saturday, May 28, 2011

Laundry Space

(Sung to the tune of "Poker Face")

Mum, Mama, Ma!
Mum, Mama, Ma!
Mum, Mama, Ma!
Mum, Mama, Ma!
Mum, Mama, Ma!

I need all clean clothes for my family today
Fold 'em, stack em, up the stairs, then put them away (I hate it)
With a little luck this time maybe you get ahead
It's all well and good 'til little someone wets the bed

Oh, no no no no, Oh no-no-no-no-no
The water's too hot, this sweater is shot
Oh, no no no no, Oh no-no-no-no-no
The water's too hot, this sweater is shot

Can't leave my, can't leave my
No I can't leave my laundry space
(All of our clothes are dirty)
Can't leave my, can't leave my
No I can't leave my laundry space
(All of our clothes are dirty)

La-la-la-laundry space, La-la-la-laundry space
(Mum, Mama, Ma!)
La-la-laundry space, La-la-laundry space
(Mum, Mama, Ma!)

How can three kids generate all these dirty clothes
The smell is so bad right here I have to hold my nose (I'm gagging)
These baby jammies really need a dose of Shout
It's going to take a miracle to get these poop stains out

Oh, no no no no, Oh no-no-no-no-no
The spinner just caught that bra I just bought
Oh, no no no no, Oh no-no-no-no-no
The spinner just caught that bra I just bought

Can't leave my, can't leave my
No I can't leave my laundry space
(All of our clothes are dirty)
Can't leave my, can't leave my
No I can't leave my laundry space
(All of our clothes are dirty)

La-la-la-laundry space, La-la-la-laundry space
(Mum, Mama, Ma!)
La-la-la-laundry space, La-la-la-laundry space
(Mum, Mama, Ma!)
(Mum, Mama, Ma!)
(Mum, Mama, Ma!)

Can't you see that I am busy
It's not easy
With this constant interruption
Shit! There's crayons in the dryer; now everything is greasy

I know your clothes are dirty
And your sleepover's at four thirty
This laundry will be my doom...
Would it kill you to clean your room?

Can't leave my, can't leave my
No I can't leave my laundry space
(All of our clothes are dirty)
Can't leave my, can't leave my
No I can't leave my laundry space
(All of our clothes are dirty)

Can't leave my, can't leave my
No I can't leave my laundry space
(All of our clothes are dirty)
Can't leave my, can't leave my
No I can't leave my laundry space
(All of our clothes are dirty)

Can't leave my, can't leave my
No I can't leave my laundry space
(All of our clothes are dirty)
Can't leave my, can't leave my
No I can't leave my laundry space
(All of our clothes are dirty)

La-la-la-laundry space, La-la-la-laundry space
La-la-la-laundry space, La-la-la-laundry space
(All of our clothes are dirty)

La-la-la-laundry space, La-la-la-laundry space
(Mum, Mama, Ma!)
La-la-la-laundry space, La-la-la-laundry space
(Mum, Mama, Ma!)

La-la-laundry space, La-la-laundry space
(Mum, Mama, Ma!)
La-la-laundry space, La-la-laundry space
(Mum, Mama, Ma!)

(Apologies to Lady Gaga)

Friday, May 27, 2011

Twin Treatise

I was warned.

Truly, I was.  Good friends of ours have twins and several colleagues of mine have multiples as well.  All of them tried to tell us, to prepare us for this new reality.  At the time I thought I was listening... apparently I failed to grasp quite a few key concepts.

I thought that we could handle it.  As you know, this is not our first parenting rodeo.  Our first born, Quinn was a bit of a handful.  He was a big baby and came after a long, hard, drawn out delivery.  We had the usual sleepless nights, the usual adjusting, the usual first time parent panic attacks,.. we also had the baby whose cries could unravel your spinal column from your skull.


Case in point: one of our first trips to Mother Goose.  I was still a little shy about breastfeeding in public so I brought bottles with me.  If you have never been to Mother Goose, you have to picture a bunch of Mommies (and the occasional Daddy) sitting on the floor with their babies.  After the program is over there is a half hour of chat time where parents network and socialize while the bigger kids crawl around and play with toys.  Generally there is quite a few babies being fed and there will be several crying at any one time.  Just after the program ended, Quinn became hungry so I whipped out his bottle and started to feed him.  Naturally, we had to stop to burp and I did so about a third of the way in.  As I removed the bottle he uttered one of his better soul-rattling screams as I briskly tapped him on the back to hurry this process along.  I could feel my face getting redder and redder as I realized that not only had the other babies stopped crying, but everyone (and I mean everyone) had turned to stare at us, mouths open.  One of the Mothers finally broke out with "Does he do that a lot?".  "Every time", I managed to get out through a gritted smile.  Finally he burped and I jammed the bottle back in his mouth and silence reigned supreme once more as the eyes turned away (and a few heads shook).  Once the middle third was done, the bottle got pulled out again and he was almost purple as I repeated the process to my unwilling and unbelieving audience.  A few watched fascinated as the last third disappeared and he turned more bright colours and threatened to make our ears bleed.  Those not gaping were hurriedly gathering bags and babies and heading for the door.  I don't really blame them.  Eventually he burped, ceased his unholy wail and immediately fell asleep on my shoulder.  We would repeat this dance until he started on solid food.  It's a wonder I have any hearing left.  It is also no wonder that I conveniently "forgot" [read:  blocked out]  most of this until Zoe came along and reminded me with her own brand of caterwauling.  Sean and I started calling him "Banshee" as his sonic screaming threatened to unhinge our minds on several occasions.  He was something else.

I guess the thinking went along the lines that if we survived that, twins couldn't be so bad.  Now that they are here and three months old, I look back at that and wonder if I was actually thinking at the time.  Zoe has her own sonic scream that sounds like cats fighting and Wyatt yells "Waaa!"  in clipped bursts until he gets really mad and then threatens to stop breathing.  Since my prayers of additional arms (or even tentacles... I'm not picky) have yet to be answered, I usually have to attend to them one at a time.  I've started wearing my Zen a lot.

The celebrity status with twins is a truism.  You can't go anywhere without being stopped, complimented and the babies cooed over.  Even a simple trip to Rona takes twice as long as we have to visit with a few twin fans along the way.  When we had just Quinn, no one helped by opening a door for the stroller and you can imagine the dirty looks I occasionally got on the bus... and this is with Quinn, the baby who, when not screaming, was drawing people from the far side of the mall over to be mesmerised by his bright baby blues.  Well, not any more!  Now the bus driver helps me get to the flip up seats (if they don't flip them up for me themselves) and complete strangers move out of the way to accommodate us.  That part is pretty cool, actually, given that a twin stroller is a bitch to operate on a good day.  I've also been asked by the driver if I'm trying to make a connecting bus as they would be happy to call ahead.  Yes, really.  At any other time, if you have the audacity to suggest such a thing, they stop just short of telling you to go f☠ck yourself.  Now I'm riding Air Force One and they are clearing the tarmac for me, baby.  I never expect it, so it is pretty awesome when it happens.

The down side to this of course, is the stupid human tricks or as I like to call it "Sh☠t Complete Strangers Say..." (I should start a twitter account for that).  I know people mean well, but man!  I'm sure they don't intend to be this daft, but I guess they just can't help themselves. Just to give you an idea, here is what I hear most often.  It's like the shuffled twin play list from hell. You can't help but get sarcastic after a while. Keep in mind that each of these have come from complete strangers:

"Two babies? Are they twins?" (No, I got the bulk pack at Costco) 
"Are they both twins?" (No, just that one...)
"Awww, a boy and a girl.  Are they identical?" (No, they have different parts) 
"Have you got two in there?" (No, the other is a dummy for balance) 
"Do twins run in your family" (They do now) 
"They can't be twins, they don't look alike" (Are you calling my flabby stomach and Section scar liars?)
"Are they yours?" (No, I'm just leasing them to start)
"You must have your hands full..."  (Occasionally.  Sometimes I put them down.)
"Do you sleep?"  (Are you kidding me?) 
"Did you take fertility drugs" (No.  Should I have?)
"Twins.  Wow!  You must be busy"  (Yes, I have my hands full.)

My all time fave: 
"Did you two have help?" [meaning conceiving] (No, we were the only two there at the time).

As I said before, people mean well, they just express it awfully.  One of my other favourites is the twin dreaming...  I get quite a few people after the initial contact/once over, come out with "I always wanted twins".  Their hands may or may not be clasped as they say this.  I usually reply with a pretty taut "No, you don't".  I'm usually talking through my teeth again as it's all I can do from bodily shaking them and screaming "Are you fcking nuts?!" .  Sure, we all dream of the perfect two little peas in a pod that beam out at the world from their stroller, but this isn't the case.  Assuming you live through the pregnancy (all symptoms are at least twice as bad) and the actual birthing process, there is a litany of stuff most people don't think of.  The prematurity.  The cost.  The work.  The guilt.  The laundry.  The time and the utter exhaustion.  As a Mom and a nurse who frequents both sides of the clock I thought I had the sleep deprivation and exhaustion thing down pat.  Nay, nay!  There are levels of exhaustion that are only open to parents of multiples and most days I am doing my best to keep this drunken half spin going so I don't just simply drop to the floor.  Ever heard of microsleeping?  I hadn't either until I had to look up why I was losing blocks of time.  I knew that I was really tired, but I'd be at the sink doing dishes and clean dishes would appear in the tray that I had no recollection washing.  For a bit there I thought I'd become Tara.  Sometimes I would have the feeling that a bolt of electricity had gone through my head; there was almost an audible zzzzzzzt! sound.  After being assured that my eyelids had closed on a few of these occasions, I did some reading and figured out I was having microsleeps.  Scary.  That was one of the major reasons I switched the kids to a four hour schedule from a three hour one, before I became a total hazard to those around me and burned the house down or something equally as terrible.

Another common conversation piece is the "-------, so I know exactly how you feel". Let me just stop right here and say that unless you have twins (or triplets or any other amount of multiple birth), you have absolutely no idea what you are talking about.  Ever.  Don't try.  Don't.  No offense, but there is no experience that is even close.  "My kids are 10+ months apart, so I know exactly how you feel".  Nope.  I have two babies that are exactly the same age and doing exactly the same things.  Yours are at different levels and you can reason with one of them.  No.  As I mentioned before, knowing twins isn't enough.  Being a twin doesn't even cut it as you will not remember most of the stuff that you did to your Mom that made her want to shave her head and join the Krishnas.  The only person that truly gets a twin parent is another twin parent.  Even before most pleasantries have been exchanged, there will be that long look with a nod and half smile; the "we understand one another" look.

I've avoided most multiple support groups and organizations as they strike me as a bit cult-ish.  Maybe it's the lack of sleep and the overwhelming desire for grown up conversation mixed with a sense of organized fellowship, who knows?  I generally take my twin communing where I can find it (or rather, where it finds me).  One delirious Saturday morning found me in Babies R Us, slowly wafting the babies through the store as I alternately remembered and then forgot random items on my shopping list.  I looked up as a deep African voice stated "I said, you have twins too!".  I smiled reflexively and saw a young couple with a 3 year old girl and 18 month old twin boys.  The Dad must have seen something in my bloodshot eyes as he launched into a twin tirade that had to have lasted at least 6 minutes.  I nodded and smiled and tried not to burst out with hysterical laughter as this poor man described how tired they both were and how little his wife slept the first year (she just nodded along as if the conversation was the only thing keeping her awake).  He went on to describe the feeding schedules, what it was like to have all three kids sick at the same time and numerous other things that were a little inappropriate to be telling a complete stranger at 10 am in the morning, unless you are in the twin club I guess.  I must have a sympathetic face or that poor guy needed to get a lot off his chest.  We parted company and as I rounded the next aisle I heard "Awww twins, are they yours?".  I looked back for my new Kenyan friends with a chuckle and caught his eye.  His expression clearly read "we understand each other" and then "you're on your own" as he sped for the door and I turned to face Zoe and Wyatt's latest admirers.

I get told almost daily "I don't know how you do it".  I don't know either. Really, I don't.  I will let you know once I suss it.  I do find satisfaction in the craziest of places...  Figuring out another thing that I can do one handed while holding a baby.  Managing to get the largest of tasks done in the smallest amount of time.  Figuring out how to get two babies and a kindergarten-er to the bus stop in the rain without the twin stroller because we left it in the van which is now in Mississauga... and so on.  Twin motherhood is like a bubble in the space-time continuum where the boundaries of energy and time are perpetually tested.  The amount of energy and time may remain finite, yet you will manage to find a way to bend them both.  You also get double the rewards for your efforts; two smiles, two sets of hands grasping yours.  You get to stumble into the nursery all blurry eyed and find things like this:

Dozing Double Cuteness

You get to celebrate the milestones twice and in two unique ways.  With twice the pain, twice the heartache comes twice the joy and twice the love.  You can't have one without the other.  Just like the babies themselves.

Wednesday, May 18, 2011

Mother Goose and Mother Guilt

Yesterday marked a milestone in my twins lives for two reasons. One, we managed to get out of the house ourselves for more than a Doctor's appointment. Two, we made it to Mother Goose.

Mother Goose is a program by the Ontario Early Years Centres for babies up to a year and their parents. The program facilitates bonding and communication with your child through song and activity. Quinn is a graduate of this program, as is the rest of my Stroller Posse (who as, you may or may not know, met in prenatal classes). I know that our weekly trips to Mother Goose certainly made a difference in my life. The networking with other Mommies was invaluable ("yours is doing that too?"), as was getting out of the house at least once a week for lunch with friends. The program itself helped me become more comfortable with Quinn as I learned how to soothe, stimulate and educate him using song. It sounds silly at first (it did to me too when I was initially encouraged to go), but it helped our connection along. His language skills are phenomenal (and always have been) and I attribute a lot of this to the program. Having my own lullaby set list saved us on more than one occasion. Whether his profound love of music and art came from Mother Goose or us or both is debatable, however he still has the CD and we still sing the songs to this day.

A Sleepy Little Monster
A sleepy little monster after a Mother Goose nap...

I haven't been able to do much of anything up until now with Zoe and Wyatt. The weather has been crappy, I'm still trying to catch up on the housework and it's only been recently that I've been getting more than 3 hours total sleep a day. Which brings me to my next topic...

The Mother Guilt. For my childless friends and family, I will explain... Mother Guilt is a real thing, as real as stubbed toes at 3am and diapers that leak. These things occur without fail and every Mother goes through it. It is not a stage, it is not a process, it is an almost daily occurrence and it never goes away. Mother Guilt is also largely unfounded and flies in the face of logic but nevertheless it perseveres. Your child hit their head on the door frame? You didn't childproof enough. Guilt. Child develops diabetes? It's your crappy genes. Guilt. Child not doing well with his or her peers? You didn't socialize them enough. Guilt.

Guilt, guilt, guilt. No therapy, class or time will diminish this; it is an integral part of the job description.

Talk to any parent with twins or read any twin book and you will be warned that you will have a lot of [additional] guilt and not feel fully bonded to your babies. As an added bonus, they caution, you may feel closer to one or the other for a variety of reasons and that this too is a normal thing. I can attest to this. Unlike with my first born baby, with whom I had time to cuddle and coo, these twins are work. Most days it feels like they are a series of jobs I have to complete. With twins it's all about task completion, schedules... and the myriad of other little things that you have to do in order to "get things done" or, more importantly "remain sane" (the last being debatable). I love my babies to pieces, but I envy the other Mommies with singletons who have more time to spend gazing into little eyes and stroking little hands and getting out to explore the world at large. Guilt. Wyatt needs extra time to help develop as much as possible and Zoe is a colicky mess most of the time... and I don't feel like I am spending any quality time with either of them. Lotsa guilt.

With Wyatt's DS, you would think that I would be all about the networking right now, but I'm not. I have tried... I really have. I have read the blogs, searched the associated websites... and I can't do it. I can't. They either depress the hell out of me and I close the browser window crying or they try and convince me how much of a blessing/treat/gift from God this is. There are also the "collectors" who, after having a child with DS, are moved to adopt several more from other places in the world. There are some with twins with DS, both identical and fraternal, but none with just one affected twin. I was reading the transcript of a radio interview this morning and the mother being interviewed was asked if she could take the additional gene away from her child would she do so. She responded with an emphatic "No!" and had a multitude of reasons why. Meanwhile, I'm thinking "In a f☠☠king heartbeat!". I guess the PC thing to say here is that I see Wyatt beyond his condition, but the truth is that I would never wish this on him. It's not horrible, it's not a death sentence, there are Rembrants and tulips here in Holland, but I would still change it, selfish as that may be. (Guilt).

Want to know The Big Guilt? The big Kahuna, the Grand Daddy, the done like dinner item? I realized by reading other blogs and online resources that I'm probably just as prejudiced as everyone else. I can't look at many pictures of other people's DS kids as they look "Too DS-y". I don't find them handsome or pretty most of the time. Despite every resource reassurring parents that DS kids look like other members of the family and not like each other, I think they do. I think a lot of them look the same. I do think Wyatt looks like my family however. I marvel at his normal hands and feet and point out that his physical characteristics are "minimal". It's kinda like saying he "has the good hair". When he's asleep and his tongue sticks out I gently tap it with an index finger to get him to close his mouth. I make sure I take the "best" pics possible of him (ie: less obvious).

Major Guilt. Check please.

Perhaps my perception will change over time as Wyatt grows into the man that he will be. Maybe I need this little learning curve to get over a few things, who knows? Maybe sancti-Mommy does need her little pity party in order to become a true advocate for her son. One can only hope so. I have spent the two months that he has been home trying to surpass this, trying to overcome the gulf that exists between myself and both my babies, especially Wyatt.

It hasn't been easy.

Up until yesterday all I saw were hurdles and tasks to be finished and overcome. Up until yesterday, I felt estranged and angry... and house happy. I was also desperately looking for a solution to Zoe's crying.

Leaving the house with twins remains a big deal, especially if you are like me and have to rely on transit during the day. I started preparing for our foray out Monday night. I was packed and clothes were laid out for all of us (including Quinn) to make my morning as easy as possible. On our arrival it was like stepping back in time; once I was in the group, singing the familiar songs I started to feel better. Oddly enough, it felt like home. Zoe stayed true to herself and cried throughout most of the hour, but Wyatt was a different story. I was sitting cross legged with Zoe balanced against one knee while I replaced her "tookie" (soother) again and again while Wyatt sat on my other knee. He was awake, but dozy, looking around lazily as he is want to do. We started with some bouncy action type songs and rhymes and I looked into his eyes at one point to find them wide open and staring. At me. Watching me sing. Then the most unbelievable thing happened.

He smiled and a connection was made.

You could tell that he was enjoying himself and that even for a brief moment, before Zoe lost her tookie and started screaming again, that we were in tune. We "got" each other. We had started to bond, finally. It was a very short period of time, but it was there. It happened.

This afternoon, after their lunch, I tried some of the songs and rhymes out on him again and the same thing happened. For a second, there it was. Zoe was still pretty nonplussed but Wyatt was on board. His eyes clicked over and he was paying attention. There was wonder in those beautiful blue eyes, and joy.

As with many of my journeys, I went seeking one thing and found another. Mother Goose may not be the answer for everything, but it will sure help. Maybe this level of networking will get me started and help me overcome a few things. Maybe I will find some resources that meet my needs, maybe I won't... or maybe I will be able to tailor what is available to fit and make my own.

I will keep looking, I'll keep shopping for people like me. In the meantime, I will continue to be honest with myself and move forward.

...And sing.

First Day of Mother Goose
First Day of Mother Goose... a little light stretching before we started.

Sunday, May 8, 2011

On Mother's Day

My Mother's Day started like any other day, to the sound of at least one baby crying. Now, as it is the weekend, I've let their schedule slide a little bit which gave me a few extra hours sleep going into Saturday. Last night they decided to take that back; this morning was not greeted as happily as the one before.

Over the course of today, I've received: 1 handmade card (from Quinn), 1 decorated cup full of dirt (that I am assured that a seed lives in), 1 handmade necklace (also from Quinn), and three commercial cards (one from each of the twins and one from Sean). We had to forgo the usual brunch as my husband has been suffering from a migraine all day... which was a bit worrysome as he does not get migraines. The day has progressed like any other day otherwise; dishes, laundry, babies. Meh.

Speaking of babies, both are doing very well after their excellent medical adventures. We were at the pediatrician 2 weeks ago and they had gained a whole pound each. By last week, they had gained another pound, which puts Zoe over 8 lbs and Wyatt close to 9. Wyatt has actually made the growth chart. Hooray!

Last Monday saw us heading to the Family MD after a trip to the polls. All three kids were due for shots. Zoe cried real tears after her needles (one in each thigh) and Wyatt almost turned blue after his... and Mommy was not far behind. Quinn too needed a jab and he took his like a trooper. He had to: Mommy quietly restrained him for the shot. Everybody got Tylenol and a couple of hours later no one was the worse for wear. Including Mommy.

Big Pout
No more ouchies pweeze.

Tuesday was a trip in the rain to Wyatt's cardiologist. They had called us the day before stating that there was an opening and they wanted to sedate him for his test (presumedly for a trans-esophogeal). Needless to say, between the 5 year old, the weather and Brampton Transit, we were very late and had to forgo the sedation (not that I minded terribly about that either). Instead, they did a regular echo and were very pleased to note that the ventricular aspect of his Atrioventricular Septal Defect has in fact narrowed significantly. On top of it, there is a significant amount of occlusion, meaning that part of the hole is mainly blocked. He therefore does not have the gross mixing of blood from the left to the right side, which means it is not overloading his lungs and, as we speak, is mainly asymptomatic. He will still need surgery eventually, but I am very happy to report that it can be held off until he is approximately 3 or 4 years of age. That is fantastic news. It allows his heart (and him) to grow and makes the surgery that much easier for everyone. Especially Wyatt.

Another Almost Smile
Yay for me!

As for his Down Syndrome... well, to this humble, non-expert, he doesn't look that far behind his sister and most of that (to me) can be chalked up to him being a boy. He does have more variety in his vocalizations, when he uses them. He's more active as well (when he is awake); he can wiggle across the crib to Zoe. I'm pretty sure she can do the same, but she's too busy yelling. I've connected with Infant Development of Peel, so we're now on the waiting list for resources.

Next on our list of specialist appointments for Wyatt will be an ENT (Ear, Nose and Throat) and an opthamologist, all within the next month or so. The appointments have settled down to part-time status, which is a blessing too. Getting these kids out the door is a major manoeuvre; the planning, the anticipating, the preparations, the packing, the equipment... I swear, it would be easier to annex a small country. I had a Region of Peel nurse through here not too long ago and she was amazed at my "organization". I told her it was do or die, and she laughed. She's the mother of twins as well, which left me scratching my head a bit. But, it was nice to know that the cheese hasn't totally slid off my cracker. It's been pretty close some days...

It's the little things that are keeping me sane these days, I think. Well, I'm not totally sure, it could be the chocolate, so that excuse is as good as any. ;) I received a 1 TB (Terrabyte) drive for Christmas and recently I've been archiving all my photography, etc. I've also been archiving my writing, especially since I stopped by my MSN Page on Quinn's birthday and found it deleted. After that little heart attack/discovery, I set up an account with WordPress and have slowly been moving things over. As an interesting footnote here, there were quite a few pieces that I thought lost forever. I took a chance and relit the fuse on an old dispute with Facebook. It only took a few emails, but I got my original profile reinstated. I was delighted (but also a little disturbed) to see most of my stuff still as I had left it, three years prior. It had switched over to the new format but all the rest was the same. I picked off what I could and then reposted them on the WordPress Archives (and then deactivated the account). We shall see... I like the layout and interface there better, however I can (and am) importing posts from my Blogger account. I guess only time will tell. I gave it a facelift as well as it looked a little crappy compared to the WordPress design. I'm also undecided how to post to Facebook... The RSS feed is flaky (see dispute link above) and it's already given me trouble today. I may just have use an old fashioned cut+paste...

I hope everyone had a Happy Mother's Day. Mine, like most days, had its moments of supreme joy and moments where I wanted to stab myself in the face*. It's the hardest job in the world... but I wouldn't trade it in for anything. Even chocolate.

Zoe and Quinn
Quinn and Zoe (in a rare, non screaming moment)

My Boys
Quinn and Wyatt

*Note: a turn of phrase, not an actual desire. Please, you don't have to call the experts, which would be me anyway, so relax. Really...

Friday, May 6, 2011

Zoe and Wyatt's Excellent [Medical] Adventures

[originally posted to Facebook Sunday, April 10, 2011 at 10:13am]

Believe it or not, we try to keep things reasonably drama free around here. The unwritten family rule is this: regardless of what washes up against the house, inside we stay cool. We like it quiet.

Then we had twins. I fear that quiet is a thing of the past.

Monday and Tuesday of this past week were scheduled to be back to back appointment days. Monday was to be Zoe's consult with the surgeon while Tuesday was Wyatt's trip to the cardiologist. That changed Monday at Zoe's appointment. Her inguinal hernia ( had become harder to reduce prior to this; in fact the last time I did it, I wanted to be sick as it required more pressure than I was comfortable with and it went in with an almost audible squish-pop. Yuck. The surgeon, who was French (which is only significant in that she is one of the few people that can pronounce my daughter's name correctly) had a hard time reducing it as well; she and Zoe battled it out for a few minutes before it popped back in. Zoe screamed the entire time. It was awful. The surgeon had an opening in her schedule the very next day, which when the shock wore off, we jumped at it. We took it for three reasons: 1) to get it over with, 2) as it was becoming harder to reduce, the chances of it becoming incarcerated were increasing all the time and 3) the surgeon was booked up for weeks doing complex 4 hour tumours and whatnot and with it getting worse, we didn't want to take any chances. Tuesday it was to be then.

Some of you may be shocked to learn that I don't have a cel phone... especially since I was practically married to mine at one time. To be honest, it's a leash that I'm happy to be without and I'm liking the money I'm saving. The unfortunate part is that there are probably three times a year that I could really use one. Monday was that day. I called Wyatt's cardiologist via payphone on my credit card and explained that we would have to reschedule and why. The receptionist was very sweet and told me she would leave a message at my home number with a new appointment. Fabulous. I figured it would be in a few weeks time, but what can you do? Wyatt's echo is very important, but Zoe's hernia was technically more "on fire" and as a parent, you have to make these difficult calls sometimes.

We did our pre-op, we headed home after a very long day at Mac. We planned to be home by noon and ended up being home just after four, which as you can imagine totally messed up everyone's feeding schedule and whatnot. Going anywhere with a baby is tricky as you have to pack their whole world; it's a major maneuver to get twins and a four year old out the door at any time. Once we had sorted out everyone and called a few people (and updated my status to take care of the rest of my peeps) we started our planning for the next day. I would be staying over with Zoe while Sean, Wyatt and Quinn would return home. I have enough EBM in my freezer for the whole NICU, so Wyatt would be more than taken care of for 24 hours. I packed clothes for both Zoe and myself, bottles, pumps, sterilizer bags, diapers, wipes... you name it. These days, hospitals don't supply anything as they expect you to bring your own supplies. If there is one thing I hate it is being unprepared, so it all had to go.

Zoe's surgery was booked for 1230; we were supposed to be there for 1100. We made it on time... and had to wait. And wait. And wait. Zoe had been NPO since her last feed at 6am, so keeping her quiet and happy was a bit of a challenge. Twins also make you a bit of a celebrity, so quite a few people were coming over to check us out and ask questions. This I normally don't mind, but with an hour's sleep and my daughter crying and her about to be cut open, I really didn't have the patience for it and had to grit my teeth a few times. We were finally called in and Zoe was "vitaled" and changed into a baby hospital gown (which was so big on her it looked like a christening gown). We wrapped her up in a hot flannel to soothe her a bit and it worked as she stopped crying and conked out. I was on edge as I walked back to the waiting area; halfway there I looked up and saw Sean's Aunt walking towards us. I almost burst into tears. It's amazing how comforting a familiar face can be in these situations; it's made even more so when it's family. (Also, thank you to the little birdie that passed my status update on... xox)

Shirley's visit also helped offset what was another lengthy wait. I have no idea what time they finally called us in, but it had to be close to 2. I walked in carrying my daughter and held her tight as I met quite a few members of her team and spoke to the surgeon. Since Zoe is only 6 weeks old I was unable to be with her as she went under and I was definitely banned from the OR. I had to hand my daughter over to a stranger and shuffle back to the waiting room to the rest of my family.

Sean wisely directed us to the cafeteria so that we could eat. Partly to take our minds off things but also to make sure that I would eat as I tend to forget these things when I am upset. Since I am breastfeeding twins, I need an extra thousand or so calories a day, so missing meals is right out. I rushed through my lunch, knowing that the surgeons actual part in the operation would take about 10 minutes and I wanted to be back there to meet up with her post-op. As it was, we got there just as she did. She let us know that Zoe did exceptionally well and I would be called in to be with her as soon as she started to wake up a bit. She also noted that there were no concerns from her point of view so that we could follow up with our pediatrician. Which, aside from being great news, is nice as it saves us another trip to Hamilton.

It seemed like an eternity passed before I was called in. Zoe was still asleep, but rooting like crazy and had to eat. She fed and before I knew it, our room upstairs was ready. This was a pleasant surprise as I expected to be in post op for at least a few more hours. As we were getting ready to move her upstairs, Sean told me that an old family friend of ours had stopped by and was waiting for us by the elevator. Zoe went upstairs while I talked to Dave for a little bit... once again, a friendly face in the middle of a chaotic day can make the world of difference. When we got upstairs, she was asleep in an enormous crib with rolled towels creating a little nest. They don't normally get babies that young I guess so she was a bit of a star with the staff as quite a few had to pop in to see "the baby" and "the twins". Since she was sleeping off the anesthetic and as comfortable as any princess, we nipped off to Shirley's for a fantastic (and much needed) home cooked meal.

I stayed on a hard little pull out couch thing that wrecked my hip and reminded me that I am old, but I did manage to get some solid sleep. I was very impressed with the staff... even though both her day nurse and night nurse's ages almost added up to mine, they were very knowledgeable and kind. They also gave us a bag with literature about the unit and a bear for Zoe (that was her second bear of the day as the OR nurses gave her a little one as well). Remember all my packing and planning? Not needed as they brought armfuls of diapers, wipes, formula, bottles... whatever I needed to the room. We're also talking proper wipes here, not the ghetto kleenex-y ones that they use at BCH that made my kids bums bleed. They were really helpful and ran to get anything that I thought I would need. It was almost a pleasure to be there.

Zoe was discharged home mid-afternoon on Wednesday and I was very happy to see my family again. We've managed her pain (if any) with tylenol and kept her incision and tiny steri strips dry. They should come off in a day or two and then she can soak in the tub in another week.

Wyatt's cardiologist had re-booked him for Thursday afternoon, so there was to be no rest for this family. Knowing how busy he is, I was grateful that his secretary was able to totally rearrange the day to fit us in. I packed up all the kids and we headed off on another doctor adventure. I never really realized how many of these we've been doing until Friday morning when Quinn asked if we had to go to "the doctors". When I answered no, he then asked if we had to go to the hospital, to go for an ultrasound, to go for blood tests... After he had exhausted his list and I had answered no to all of them, he replied "Oh good. I'll just go play in the yard then. If I remember how...". Ouch.

The people at the cardiologist were very tolerant of the Swiss Family Logan descending upon them, with our massive stroller, diaper bags and assorted baby paraphernalia. Zoe and Quinn hung out in the waiting room with the secretary while Wyatt and I went in. Wyatt handled the checkup portion quite well but was pretty restless through the echocardiogram. I had to stoop down and hold his hands as he kept trying to take the probe away from the sonographer, the little monkey. We returned to our gear and the rest of the family for a few moments before the Doctor called me in again. He had the images running and told me that he wanted me to take a look at something.

As you all know, Wyatt has AVSD or Atrioventricular Septal Defect. ( ) Wyatt's Dr. showed me that the ventricular part of the defect had narrowed since the last echo in utero. In other words, the bottom part of the hole was not as big as before, which was good news. In layman terms, this means that the mixing of oxygenated and deoxygenated blood in the heart would not be as much, thereby reducing his symptoms (as of now, he has none). He then continued to say that he wanted to repeat the echo in a month's time. If what he felt was happening was actually happening, we may be able to postpone Wyatt's surgery until he was four years old. The Doc was still going to present Wyatt at Sick Kids (ie: in Rounds) in a couple of months time, but he felt that things were not as dire as expected. This was fantastic news, to say the least. Waiting will give Wyatt's heart time to grow and he with it, thereby making it a little easier. We shall see in a month's time.

I'm not sure if I'm learning to appreciate the little things or if I'm getting better at handling new crises that come our way. The BFF commented the other day that I sound better (ie on her mini psychosocial assessment) this time (post-partum) than I did with Quinn, even though "this time" involves two very complicated babies. I have to agree with her. Even though Zoe has us all up all night long with her colic and revolving symptoms and Wyatt gives me the willies every time he freaks out and turns blue, it's do-able. I don't know how it is, but it is.

Now if I could only get some of that pesky sleep...

Checking In

[originally posted to Facebook Thursday, March 31, 2011 at 4:22pm]

I will admit that it has been a long time since our last twin update. I will also admit that I am not sure what day it is or what my phone number is (which is scary as I've had it since '93). Wyatt and Zoe were born on February 16 and other than a few highlights that I can string together out of the haze, the days have flown by. I can't believe they are now 6 weeks old (and now officially "full term").

Preemies face many obstacles that most people don't even think of. This whole experience has been a giant learning/refresher curve for me as well. Born at 34 weeks and 4 days, the babies were unable to eat; although they do come equipped with a sucking reflex, they were too small and weak to actually draw milk from a bottle or breast and when they did, they tired easily. Both babies were a pretty good size, which allowed them to play catch up rather quickly, but it still meant tube feedings via nasogastric tube for most of their first few weeks.

My experience with the NICU, although positive (those girls are fantastic and have the sweetest gig up there!), is slowly receding into the realms of bad dreams. For the first two weeks, it was awkward but relatively easy; basically I had two babies by emergency C section... and then went back to work. At least it felt that way. I was only a patient in the hospital from the Wednesday night until Saturday morning (the only reason I got to stay Friday night was the fact that I was an RN on staff). Starting Sunday morning, I spent at least 7 hours a day, every day, in the NICU with the babies. The first week was pretty awful with the fresh C section as the walk from ER seemed to be never ending. I actually had to use a wheelchair as I was either in too much pain or completely pegged out by the time I got anywhere. Simple things like getting in and out of the van were torture. After about 10 days or so, the pain had dampened from "excruciating" to "annoying" and it was only there when going from a stand to a sit or something similar. I was still sleeping in my big leather armchair as lying flat and rolling over were impossible, but I was managing (I finally got back into my bed last week). I would spend all day with the babies, slowly assuming their care, trying to teach them to latch and holding them while a tube filled their tiny bellies with at first preemie formula, then some feeds of colostrum and then finally milk that I pumped and left for them. Every morning I would arrive between 9 and 10 with a cooler bag and make a deposit in the fridge (then eventually the freezer). I would get report (usually I arrived during rounds and could eavesdrop a bit) and start the day. They were fed every three hours, one hour apart. Zoe would start at 1100, Wyatt then at 1200, Zoe again at 1400 and then Wyatt again at 1500. By the end of the 3 o'clock feed I was usually exhausted and needed to sleep... that is if I hadn't already passed out with a baby in my arms at least once during the afternoon. Sleep thankfully came when I arrived home; when not pumping or eating I was sleeping and I needed it. I'm not a good sleeper to begin with but September was the last time I can remember getting more than 3 hours in a row. You can imagine my surprise when I was now clocking 6 or seven hours. Heaven! Then I would get up and do it all over again.

Sean was home for the first two weeks which made things pretty simple. We would take Quinn to school and then he would drop me at the hospital. The boys would come by for a visit later and then pick me up. It was difficult keeping Quinn occupied as he is a busy little guy, so we tried to keep his visits short. He would draw pictures and we decorated the babies rooms with them, much to the delight of the nurses. Still, it was very hard for him. We always reward good behaviour with a high-five around here... Quinn has added a "Go Team Logan" at the end which is just adorable. He flips back and forth between desperately wanting to help and being upset. It's all normal and it's improving, the closer we get to our "new normal" over here.

The staff, as I mentioned earlier, were fabulous. Organized, knowledgeable and very instinctive. They knew when to push and when to not with me, which I appreciated. They also made a point of appearing to keep their distance at times, which I also appreciated, even though I knew they were keeping a close eye on us. Finding out that you have a child with special needs is hard, that I know from both sides now. I felt bad for the social worker who was obligated to stop and talk to [read: assess] me, because she knew who I was and where I worked. I've had a few staff through, it's hard to assess the "assess-er" sometimes. She too was very nice. We talked about a few things, resources that were to be set up, but also my level of coping. I would be a complete fraud if I didn't mention the crying spells here, so there you have it. For the first two weeks, until Zoe came home, I would have my little moments at random. Partially hormonally fueled, but also grieving the loss of my "perfect" baby. It sounds a bit weird as I have a healthy baby, but during pregnancy, you have a fantasy baby (or babies, in my case) in your mind which is rarely what you get, but nevertheless it is there. Having a son with Down Syndrome was not my fantasy by far and I had acknowledge and accept it. Sounds very clinical now, doesn't it? It was, simply because the little psych nurse never left my shoulder, thank god, so I could rationally think my way through the crap if I just took a breath. It was like a whirlwind of pain as I grieved the loss of my fantasy football/scientist/rock star (or whatever) son and feared what the future would hold for him and what it would take to get him to whatever level he could achieve. I also cried for my own selfishness and for my own guilt, which you mothers out there will certainly comprehend. I cried silently while holding my son at the hospital and wiped my tears off his face while he slept. I sobbed uncontrollably in the shower. Once this all had started, I wouldn't have to think of anything at all and the tears would come on their own. Like in the grocery store. Or while waiting in line in the cafeteria. I also cried when I had to leave them every day, holding each one tight and kissing their tiny faces and hands. Part of me whispers "pathetic" as I write this, but it is dreadfully hard to leave your children behind. You truly don't know love until you become a parent. I know I am going to piss a few people off with that statement, but it is true. You may have pets, you may love your significant other, but you cannot comprehend the overwhelmingly pervasive feelings you get until you have children of your own. I'm sorry, but the cats and dogs just don't cut it. Each and every day, I felt as if I cut parts of myself away and left them behind. I couldn't stay and I dreaded coming back in the morning. It was hell.

I tried to contain it all when talking to family and friends, especially Quinn. There was one day when my Mom called and caught me off guard and got the brunt of it, but that was about it. I tried to stay up, to stay clinically focused as that provided some relief from the rawness, but the cracks would form and the tears would seep through. My grief, coupled with hormones, mixed with worry for the twins and guilt for ignoring Quinn really made things pretty toxic. Thankfully I have wonderful friends who would take Quinn for an afternoon on the weekends, which certainly helped and gave Sean and I some time to talk. I was just starting to come out of it when my one nurse told me that Zoe could go home the next day. Naturally, I burst into tears.

With each and every feed that I was there, we had been working on teaching the kids how to eat. Both had a strong suck, yet Wyatt's mouth shape led towards an unusual latch. The NICU rule was that they had to be NG feed free for 48 hours before they could go home and I was determined to make sure that happened. After I started bringing my "home cooking" in for them, we started "test weighing" them. Each time they fed, they would be weighed before and after to see what they had gotten off the breast and then "topped up" with either a bottle or a 'tube. Zoe progressed slowly but steadily from the start. Even when the kids were separated in their own isolettes, you knew just knew Zoe was the stronger one. Our little mighty Micro-Me pushed herself and did a little more every day. It was frustrating as these were preemie "baby steps", but you could see the progression with her daily. Wyatt was another story. He would feed from the bottle once a day, would have a freak feed once in a while, then fall back asleep and have to be tubed for a day and a half. I was delighted that the OT was a girl I had worked with at Etobicoke and together we worked on Wyatt, trying this technique and that on a bottle and analyzing the results. I had to teach him to pace himself as he would forget to breathe and choke or exhaust himself completely. We tried different holds, different nipples. The lactation consultant was also helpful, popping by daily with different holds and some words of encouragement. When he wasn't feeding, I held him and had him work on a soother to try and strengthen his facial muscles. Zoe's weight, after the initial loss, steadily climbed while Wyatt's rose and fell, seemingly at random. They were assessed by the dietician and the EBM (expressed breast milk) that they were getting had to be fortified with some formula to add extra calories. I generally equate formula to chips or some kind of ready made frozen entree, so you can understand how underwhelmed I was by this. Sure, it may have started out with good ingredients, but it's pretty much crap that puts weight on babies. In this instance, we're using it like protein powder to put weight on my preemies. To this day we are still using it and I look forward to when it is no longer needed. Not only is it expensive, but it's hard on their little tummies.

Sometime during the second week they began rooming together and shared a crib, which was nice for everyone as they were back together again. I also didn't have to sit helpless as I held one baby and heard my other crying from a room away. We were plugging along when I went in one day and our nurse told me that Zoe had been tube free for 24 hours. I wasn't going to get my hopes up as she was still quite small and I wasn't sure that they were going to let a four pound baby go home in a car seat, but it was still good news. The next day we had passed our mark and I was told she could go home if she passed her car seat test. Which, naturally, she did with flying colours. Two weeks to the day after she was born, we brought our baby girl home. Then the real work started.

My trips to "work" now became "take your kids to work day" as I lugged Zoe back and forth from home to the hospital. With Sean's return to work it made our lives more difficult as we tried and schedule visits to the NICU and still take into account things like Quinn going to school. Luckily, Sean's Dad came down for a week and looked after Quinn while I shuttled back and forth between Wyatt and home. Having one twin with me at home and one in the hospital was exhausting; I had to keep Zoe on the same schedule and was up most of the night with her and then had to pull my "shift" with Wyatt. Every feed that I was with Wyatt, he was learning and adapting and getting a little bit better. Unfortunately, with me being there for only 2-3 feeds a day, it was going to be a long drawn out process. By Tuesday of Wyatt's third week, I was getting frantic. Although that morning he had completed a full bottle (causing the staff to have a "Go Wyatt" happy dance, so they tell me...) it was going to be a long haul if I didn't step things up. Zoe and I would have to start doing 'round the clock stints with him in order to get him off his damn feeding tube. So, that Wednesday, we moved into one of the courtesy rooms. They are small, uncomfortable and almost impossible to sleep in, but it sufficed. I was there for over 32 hours and missed only one feed (the night nurse let me sleep as I guess I was pretty zombified by then). By the time I left I was exhausted and completely discouraged as there had been no sign of improvement at all. I was crying in the van as I told Sean my fears that our little guy might be in hospital for weeks, maybe even months at this rate. I went home and slept and then took Friday morning for Zoe and I. Up until that point, Zoe and I had not had a morning where we could just feed and rest and spend time other than in preparations/travel. Quinn was also going to his Grandpa's for a March Break after school that morning, so I wanted to be there to see him off and say goodbye. We had our morning, I got some sleep, I (tearfully!) saw Quinn off on his vacation adventure and I called the NICU to let them know that I would be in later. The nurse mentioned casually that Wyatt had been tube free since just after I had left. It was early, but it was a tiny bit of hope.

With our little seed of hope starting to sprout, Sean and I went to visit him in the evening for his 2100 feed. Still no tube! I talked to our nurse who told us to go ahead and bring in the car seat just in case as she felt this was the beginning of the end of the NG. She was so confident, in fact, that she had taken it out already. By the time we returned in the morning with the car seat, Wyatt had surpassed his 48 hours. I swear, it was as if someone had kicked the knees out from under me as I could barely stand with a mixture of joy and relief (and simple exhaustion).

We agreed to bring him home Monday as we needed to make sure all his follow up appointments had been take care of and links to community resources had been started. I went up with Zoe, just like every other day and hung out until Sean got of work and could bring us home. Again, RHIP as I'm sure they would have booted us out earlier if they had wanted to. It felt so good to bring them home together. It just felt... complete to tuck them into their bassinet that night, almost a month after I didn't make it to dinner.

Since then, we've been trying to find our stride. Having most of a week with just the babies helped as I could putter around their schedule as best I could. I also had to try and get them on the SAME schedule as the hour apart thing was unworkable at home. That part was easy, as was changing them to four hours just this past weekend.

Now the challenge will be to keep up with the appointments. Both have been seen by the family doctor and the pediatrician. Last week, during our routine pediatrician appointment, we were pleased to hear that she felt that the kids were doing well and gaining weight. Since Wyatt had only averaged 12 g per day since discharge, we have to continue with our formula top up for a while. Wyatt's AVSD seems to be quite balanced at the moment as well, so it is not posing any problems right now. The visit wasn't all good news however, as she found that Zoe had an inguinal hernia which had been totally missed up until that point. She reduced it in the office, but let us know that our little girl would need surgery too and probably sooner rather than later. We didn't treat it like a big deal, but it is just one more thing. We see the surgeon at McMaster on Monday (right in the middle of the hospital change over! It will be hell) and we see the cardiologist on Tuesday for Wyatt for his echo and to find out more about his surgery. I'm sure I'll have dates and whatnot by Wednesday, so I will update if there is anything.

The babies themselves are just darling and each has their own distinct personality. Zoe is colicky, loud and a laundry generator. Her eyes are the colour of hematite and are just as bright and shiny. She also ensures that no one gets any sleep around here. Wyatt is laid back, cries only in short bursts and is easy on the laundry. He is still very sleepy, but this morning he was wide awake and it was nice to sit with him as I got my Tassimo on. He gazed around with his dark blue eyes and focused on various things around the room like any other newborn. He can also hold his head up for a few seconds and has excellent muscle tone for Trisomy 21. We still don't know what the future will hold for him, but he seems to be pretty good with most things.

Right now they are chillin' in their swings, bellies full. I'm going to try and get some shut eye as I am only averaging about 3-5 hours total a day. That will get better, but for now, we soldier on. When you have twins you really learn your limits: how little sleep you can get, how little you can eat or drink, how much you can do with one hand or possibly a foot... How long it takes you to notice that it's been a while since the last shower. Which brings me to the next limit: memory. I don't have one. I don't know if I will every have one again, but for now, it's gone, baby. I have a book and a board I rely on; I would be completely messed up without either of them. The board is a cheapo whiteboard from the dollar store with "Mommy's Brain" written on it. It is stuck to the front of the fridge. On there I add any sort of random thought that I come across that need to be remembered. Right now, in random comic balloons, there are entries like "Bottles: 60ml". There are mini shopping lists: "Batteries, pop, toilet brush, mayo". There are memos like "Call ___________" and the most important one "Last Shower: ______". The book is different. It is a 3 column leger that keeps track of when they fed, who pooped, who took how much top up, who slept. It sounds ridiculous to parents of singletons, I'm sure, but it has to be done. Any sort of trend can be monitored as I have raw data; any sort of question any of the doctors may have about the day to day stuff, I have it at my fingertips ('cause it ain't stored upstairs). Both are invaluable tools that I would recommend to any new parent. Especially if they have or are having multiples.

Once again, thanks to all for the kind comments and emails. They have meant a lot to us over the last month and have given us fuel when we were running on empty. This is not easy and is getting harder with each new thing that crops up, but we can do this. We have to.

Go Team Logan, go.

Einstein Syndrome

[originally posted to Facebook Saturday, March 12, 2011 at 8:37pm]

I have found this over and over looking at Down Syndrome parenting resources. It is worth sharing, if only to raise awareness.

I don't know what the future holds for Wyatt, but it will be as rewarding as possible if Sean, Quinn, Zoe and I have anything to say about it.



Einstein Syndrome

by Miriam Kauk

Imagine that you have just given birth. You notice a sense of excitement in the room. Finally, the doctor comes to you with a big smile and says, “I have some important news to give you. Based on our preliminary examination, we believe your baby has Einstein syndrome!”

The doctor goes on to tell you that children with ES typically read by age three, and by six or seven read at a high school level. They can master many languages during their preschool years, develop phenomenal vocabularies, and complete high school by age ten or eleven and college by fifteen. Furthermore, children with ES have remarkable physical skills. Many Olympians have ES. And they tend to be excellent musicians.

Now, how are you going to treat this child? It is doubtful that you are going to leave him in his crib for the first two months, watching a mobile.

Instead, you will keep your child in a room full of activity. You will talk to him, naming items, and expecting him to begin to understand you. You will surround him with classical music. You will read to him as much as you can and begin teaching him alphabet letter sounds very early.

This child will go with you everywhere, just so you can teach him more about the world. He won’t be in a playpen; you will be giving him lots of opportunities to learn to crawl, and you will expect him to go get things himself. You will probably hire a nanny who speaks another language, and will likely enroll him in gymnastics or swimming classes.

Guess what? Even if the diagnosis was wrong, by the time your child is five or six, people will begin commenting on how incredibly bright he is. He will be an excellent reader, have a tremendous vocabulary, have a good ear for music, and be exceptionally coordinated, all because of the extra input that you have given him based on your expectations.

Contrast this with another scenario, this one all too real. After giving birth, there is stillness in the delivery room. The nurses seem to avoid you. Finally, maybe several hours later, the doctor tells you what is wrong. “Your baby has Down syndrome. Try not to let it ruin your life.”

As you read more about Down syndrome, this dreary prognosis emerges: Your newborn baby is retarded. He will learn to crawl and walk late. His language skills will always be minimal, and he will never be able to express himself well. This child might learn to read a little, but certainly not by the age that normal children do, and never well. Even as an adult, he will always do stupid things because he will never learn to think well.

With that dreary prognosis, how are you going to treat your baby? Why bother talking to him? He won’t understand you anyway. Why bother reading to him? He’ll never learn. Why bother even getting him out of his crib? He isn’t supposed to crawl for many months. And guess what? He doesn’t learn to walk, read, talk, or think well, just like they all said.

I am convinced that the biggest handicap Down syndrome children have is the low expectations of their parents.

This baby may have physical problems. Maybe he doesn’t hear well. Maybe he has poor muscle tone or a heart defect that leaves him weak and causes difficulty with new physical skills. This little baby needs lots of extra sensory input just to balance his physical handicaps.

As a baby, my daughter, Mary would have been content to lie on the floor for hours sucking her thumb. As a toddler, she hardly demanded any attention. With five other children, I had plenty to do and easily could have ignored her. But Mary needs more input, not less. I needed to make a constant effort to interact with her and involve her in what the family does. As a result of all that extensive input, by the time Mary was three, she wasn’t in the least passive, but was on the go non-stop.

I have been accused by a social worker of not dealing realistically with Mary’s condition, of being in “denial.” Yup, I’m in denial. But as long as I believe that she is capable of normal function, I will be willing to give her the input she needs to get there.

[This article was first published in the Teaching Home magazine in July/Aug 1994.]

The Best Laid Plans

[Originally posted to Facebook Tuesday, February 22, 2011 at 10:02pm]

Life never ceases to amaze me. Not 12 hours after my last post, I was in BCH in labour. What are the odds?

After our plumber adventure and my trip to pick up Quinn, the day was pretty uneventful. Naps were attempted, tv was watched. I was feeling very slow and heavy, so I stayed in bed to rest even after Sean came home. As I lay there, I was planning my evening: find all the bottles and such, get the crib linen washed and on the crib, sort out the bassinets, find a few missing boxes of baby things. It was a short but important list. Sean called me for dinner and on my way downstairs I made a quick stop in the washroom.

Where my water broke.

All Sean heard was "Gaaaahhh!". Once he figured out it had nothing to do with his beefaroni, we got moving.

The next 20 minutes were a blur as we topped up half-packed bags, fed our son and made plans for his sleepover. Luckily, my friend and I had sorted out the contingency details THAT MORNING. We piled in the van, the contractions hit and honestly, I don't remember much until I got in the ER doors and stumbled my way to the elevators to L&D. I'll spare you the details of the next three hours, but know that when I found out that my OB was on call, I may have been a little exuberant with my "OH THANK GOD!".

I had an emergency C-Section and other than an anesthesiologist who quite possibly thought he was an acupuncturist (OW!), it went reasonably smoothly. Once Mr. Jabby found the right spot, I was numb up to my chest (I could feel and use my arms this time, as opposed to the floating head phenomenon that I had with Quinn). Wyatt was born first, at 10:18 pm (4 lbs, 13oz). He was quickly whisked away to a warmer and I really didn't get to see him. I was about to say something when I felt a punch in the diaphragm from the inside. Seems Miss Zoe did not want to be born; in the words of the OB, she delivered the first baby, turned back and thought "where did the second baby go?", as both babies were head down at the start of the procedure. Zoe apparently did not want anything to do with what her brother was up to, had turned, crawled up as high as she could go and flipped over so that all the OB could find was her back. My OB spent the next few minutes trying to turn her manually (which meant more punches) so that she could be dragged kicking and screaming into the world. Which she was, at 10:21 (4 lbs, 1 oz).

Once she had been suctioned and I heard her cry, I turned my attention back to Wyatt's team who were clustered around his warming bed. They were too quiet. Then I knew.

I knew then, even before the Neonatologist came over with his sheepish look and cleared his throat what he was going to tell me.

I knew that Wyatt has Downs Syndrome.

He spoke quietly to my OB for a few seconds before she loudly announced (as she was sorting out my insides) "Jennifer knows. She chose not to have the amnio... she knows a lot about this. She's a nurse. She knows. She knows about the heart. Just tell her." What he said then was that Baby A (Wyatt) appeared to have some of the physical characteristics and hard markers of Downs Syndrome. We would not know exactly or the extent until the cord blood samples came back in a few days. I have no idea what I said in reply, but he seemed to be accepting of it and shuffled off. Wyatt was brought up to me all bundled a few minutes later and I got to kiss my son before he was whisked off to the NICU. Zoe was brought shortly after that and all I could think of was how small she looked. I didn't get to kiss her before she too disappeared. Sean followed them and I was left with the team, talking shop with them whilst they cleaned and stitched me up.

I had to remain in recovery until I could move my legs and wiggle my toes. I have no idea how long we were there but I managed to con some jello and a cheese sandwich out of my nurse (remember, I didn't get my beefaroni). On the way to my room they wheeled me through the NICU; I got to stroke Zoe's foot and touch Wyatt's hand before I was in my room for the night. It was a long night too... I couldn't have any pain meds until after 4:30 and it was only Naprosyn and Tylenol at that point anyway.

I didn't get to hold my kids until much later the next day when I stupidly made the long walk to the NICU on my first ambulation. I spent three hours there, holding each one, talking to them and tryng to not get all our tubes tangled up. It was hard leaving them and I was physically exhausted and in a great deal of pain. That little stunt set me back two days, but I'm happy to say that I am getting better.

As it stands now, they will be in hospital for weeks. There are a few milestones that they have to meet before we can entertain the idea of bringing them home. They are being fad mainly by nasogastric tube, but are encouraged to latch and have the occasional try at a bottle when they have the energy. They have to gain weight and to grow. They may come home together or individually. We won't know until we get there, basically. So far, any issues Wyatt has with anything seem to be due to his prematurity and not his Downs.

Both are beautiful babies and have their own personality. Wyatt will be my cuddle bug, I can tell. He has beautiful almond shaped eyes that are blue with a hint of green in them and the longest eyelashes I have ever seen on a newborn. Zoe has no problem letting you know what she wants and has the brightest blue eyes that can melt your heart or stare you down (I have no idea where she gets that from either).

We're waiting for the results of Wyatt's cardiac tests, which should be available tomorrow. His cord tests came back positive for Down's in all samples; we won't know the extent of his delays (if any) until we get there as well. It is what it is.

How are we doing? Quinn is on cloud nine about his new brother and sister. It hits Sean and I once in a while and I have at least one good cry daily and tear up frequently. I love my son dearly; that doesn't mean that I would ever have asked this for him. The grieving process is normal thing... I just have to let it happen (which, as you know, I'm not very good at). I am trying to go with the flow. It's hard, but I have to do it. I have to heal. That too, is what it is.

I am happy to note that neither of them has ever needed oxygen. They came off their IV's two days ago and just have their monitoring leads and NG tubes. Wyatt was moved to a crib yesterday; Zoe will need to stay in her isolette until she grows a bit. Wyatt has shown no signs of jaundice, while Zoe had two days at the spa, basking under the UV lamp (she hated it, BTW). Both are doing very well and are very healthy for preemies.

Both Sean and I would like to thank our friends and family for the tremendous support we have received over the last little while. From a few well placed words of support to looking after Quinn to making sure we remember to eat and sleep, it is all very much appreciated. The next little while is going to be rough, but it helps knowing that you are out there.

We'll keep you posted.

Par For the Course

[originally posted to Facebook Wednesday, February 16, 2011 at 7:24am]

Oh my.

It is very easy to remain positive in the face of good news. I've spent the last week as well balanced as a late 30-something year old pregnant woman with twins can be. Well, we can't be having that, can we?

After last week's visit to the High Risk clinic, my OB and I left it at "come see me in two weeks", "take your blood pressure next week", "have another ultrasound in two weeks" and "come in if there is a problem". You can imagine my surprise when her secretary called me on Friday to book an appointment for Tuesday. Not only did she call me when I was napping, but when she couldn't get a hold of me the first time, called my husband at work (who told her that I was probably having a nap). She then called me and booked me for what I thought was an office appointment at 1:15. With so few weeks left, I just chalked it up to it being the time for the weekly appointments.

Once again, I took my son off his school bus and brought him home long enough to visit the loo and pack him a lunch for our adventure. It was a good run in... the ice was melting, the glacier was retreating in spots and we were EARLY for a change. We walked into her office and found it clean and devoid of human life other than a very surprised secretary. It took a few mintues of explanation on both sides to figure out why I was there and not at the clinic; long story short I told her to call ahead and tell the clinic we would be late as we now had to take the bus the other way across town. Grrr!

Aside from being long, that trip was uneventful as well, other than I started to really wheeze and hurt as I walked. Normally I walk at about 3-4.5 mph as a rule, but I'm now down to a slow rolly-waddle with occasional breaks to catch my breath. I followed the instructions given to me by the receptionist and we toddled straight up to the third floor... only to be sent down to the ultrasound clinic to register again. My OB, the doll that she is, baby-sat my son while I took care of that bit of business (including the awkward explanation of why I didn't have my ultrasound req. with me.) I got back to the third floor to find Quinn and my OB consulting over some of his drawings while a nurse stood by nodding in approval. What can I say, he's a ladies man. She went to quickly consult on a patient, I got a cheese sandwich into the boy and then it was my turn.

Quinn was drawing Mommy a card with roses on it, so I was chatting back and forth to him for the first while. My sonographer explained to me that we wouldn't be doing all the complex measuring today, rather we were checking to see how healthy and happy the babies were. There was a small bit of back and forth between us, but I really wasn't paying much attention until I heard "yeah, there's a couple of infarcts there". [record scratch]

I'm sorry, WHAT?!

Seems that Zoe's placenta has a "some" infarcts or areas of dead/scar tissue. I'm not sure how large they are or how much of the placenta is affected. This sometimes happens in normal pregnancies and I know that it happens a lot in Pregnancy Induced Hypertension (PIH) and Interuterine Growth Retardation (IUGR). It also happens near the end of pregnancy as the placenta starts to wind down. With my magic number still at three weeks, I wasn't happy to hear that. I was less happy to hear that Wyatt has dropped well into the pelvis (hence my trouble walking for the last few days) and that his placenta shows signs of starting to begin to break down. Damn... and blast.

I'm lucky that my sense of humour kicked in and I waved it all off as par for the course (either that or I've finally snapped, take your pick). At this point, seriously, what the heck else can I do? As it stands now, we (even more so than before) are going day by day. I monitor the babies daily, doing kick checks and whatnot, I spend even more time resting. I am on weekly trips to the High Risk clinic with weekly ultrasounds. We are still sticking with March 10th as our latest "go" date, but the reality is, I may get the tap next week. I may or may not get 24 hours to get my shit together before (depending on whether it is "planned" or "emergent" in nature). I wouldn't be worried if it wasn't for their little lungs and weight. 37 weeks with twins is good; 35 weeks (or less) is not as good and may mean some time on Bi-pap in the NICU while Mommy goes home.

My blood pressure, thankfully, is a few points down. I laughed and high fived my OB; after the above news and a few other things this week, it should have been sky-high. I guess that is something in itself.

Today, my day includes remaining calm and dealing with the plumber. Yeah, we have a leak somewhere in the kitchen that is lifting the floor in front of the dishwasher. I guess that too is par for the course...

Putting the "Fat" in "Kung Hei Fat Choy"

[originally posted to Facebook Wednesday, February 9, 2011 at 6:27pm]

After the last visit to the OB/High Risk Ultrasound clinic, I felt it was time to gain a little weight. It didn't hurt that my appetite magically turned on like a faucet either. Despite my previous size, I have had the hardest time gaining weight this time around; these twins are consuming me from the inside out. As you all know I had a really hard time early on with the nausea/vomiting; now the problem is just trying to eat with a stomach that seems to be a) lodged in my throat and b) the size of a small mandarin orange. As it stands now, I am nine (count them, NINE) pounds over my pre-pregnancy weight. It sounds lovely on the surface, but these babies need weight and with maximum four weeks left, they need it fast. So, I hit the pasta... and everything else that wasn't nailed down or at least moving slowly. Sean had bought a few packages of Chinese dumplings/pork buns, etc in the hopes of having them on Chinese New Year, but I ate them. Myself. One pack a night for a week. If you had peeked in my kitchen window at about 10pm, you would have found me drooling over a steaming pot. Say what you like about the nutritional content, but it was food, and fantastic. We have to get more this week... the popcorn and cheese and tomato sandwiches are just not cutting it.

Yesterday found Quinn and I on another "ultrasound adventure". You have to spin these things just right, to justify ripping him off one bus and tossing him on another while force feeding him a sandwich. We were a few minutes late, but that really didn't matter as the clinic was running an hour behind schedule. Keeping him occupied while trying to keep my eyes open was a bit tricky. However, eventually it was our turn and we tromped in.

The OB gave the sonographer her marching orders (with a wink and a smile at me "Did I miss anything, Jennifer?") and took her leave as I laughed and shook my head. Quinn then got to giggle a bit as once again, Mommy got covered in "icing" and we were off. I was ecstatic to learn that Zoe had not only gained weight, but she had rejoined her ORIGINAL growth curve. So at 4lbs even, she is well on her way to not being a NICU baby! Wyatt weighed in at 4.6lbs, so each put on between half and .7 lbs in two weeks. Yay babies (and yay dumplings)!

There was no other news from the ultrasound worth mentioning at this point other than things seem pretty good and I don't look like I'm going into labour just yet. In fact, I've been downgraded: I can see her in the office and continue with my ultrasounds in the regular clinic.

I asked her about my fasting sugar test (which I did January 10th and have been anxiously awaiting the results as I flunked the first one). She had to go look it up, but I was very pleased to hear that it too was normal. So, in the words of the BFF (who happens to be a Diabetic Educator) "If you don't get it now, you probably never will". In my words: "Pass the damn ice cream!".

Of course, we can't get through an appointment without some new drama cropping up and this time it was with me. I've been having some headaches lately (and chalking them up to weather/sinuses/stress) and it seems they could be reflective of my now increasing blood pressure. Now, to be fair, the result is the higher end of normal, but with a really low BP most of the time and up until now in the pregnancy, it could be the beginning of Pregnancy Induced Hypertension which could be very serious. Deathly serious. So, I've been sent home with instructions to RELAX, monitor my BP and if I get any additional symptoms to head directly to L&D. Roger Wilco.

So two new happy things and one more thing to try not to worry about. It's a fair trade, I guess. I'm trying to remain as calm and relaxed as possible; I try to fit in at least two naps a day, put my feet up all the time and try and seek out things that relax me (music, chilling in front of a fire watching TV, my ever faithful bathtub...). It sounds idyllic, I'm sure, but it just gives me more time to think up things that I should do before the babies come. Luckily, I have friends and family that remind me constantly that all will get done in time.

Which is good. Tick tock...

Growing Pains

[originally posted to Facebook Wednesday, January 26, 2011 at 6:59am]

So, to fill in the gaps, here's our latest update from the high risk ultrasound clinic at BCH. I do have to say, I love that floor. It's nice, it's clean, it appears to be well laid out and the nurses have been pretty friendly so far. I don't feel like I have to "out" myself every three minutes to get decent care. That is a good feeling.

Mr. Q and I went on our ultrasound adventure today; he, hopped up on tylenol to break the fever that kept him home from school, me, flustered and running late. We breezed in, had a bit of a chat with my OB and the sonographer and put Quinn in a chair where he could see and still be quiet. The test itself took over an hour, which, aside from the echocardiograms, is the longest one I've had so far. I asked her ahead of time to give me a rough estimates of both weights, simply because I had no idea where they were with their growth. I was told by the tech that Wyatt is currently (approx) 3.9 lbs and Zoe is 3.5lbs. According to the chart in my head, that is pretty good for twins at 31 weeks. Once the test was done, we waited for the summation from the OB.

I hinted in my comments earlier that we got some hopeful news, some facepalm news and some weiierdo news and that is exactly what we got. Yes, the AV hole is still there in Wyatt's heart and the one side of his heart is a teensy bit larger. The sonographer was also unsure whether she would have ever seen that ever, which is a testimonial to how good my fetal cardiology team is. That was hopeful, as it provides a little more reassurance to an area where it is needed. He also seems to have a little more fluid in his abdomen which could be anything, including a full bladder. As for the rest of the soft markers: There were none evident (as in seen). (Yay!) However, my OB was quick to point out that 50% of Down's Syndrome babies have completly normal ultrasounds. (D'oh!). Truly, we are not going to know if he has Down's until I am holding him and/or the genetic testing comes back on the cord blood (if he is Mosaic).

Zoe, not to be outdone by her brother, has fallen off the growth chart this time around. Generally babies stay on a nice, predictable growth curve unless there is a problem. With twins, inter-uterine growth retardation is often a reality; there simply isn't enough room to grow. As it stands now, Zoe seems to have lost her growth rate and some amniotic fluid/space. I was told that we were going to monitor this very closely from now on (how much closer can we get? I thought to myself...) which would give us an indication whether this was an isolated incident or not (remember, I'm just getting over the flu). I was told that my C-section date has been moved to the 10th of March now and that may have to be moved up more if Zoe continues to not grow at the rate she should. In fact, they might have to take the babies even earlier than expected (which is not the optimum scenario for lung development) if this is the case. Already we were looking at delivery at 37 weeks, this could be pushed back to 36, 35, 34... and it is all wait and see. To make this short, all my biweekly ultrasounds will now be in the high risk clinic with the same sonographer and my OB in the next room. That way if I need an emergency C-section, I am already registered and just have to move down the hall. I'm sorry, but that rattled me a little bit, especially with Quinn sitting there.

To put a fine point (literally) on what was already an exhausting day, I had my first of two shots of Celestone (betamethasone), a corticosteroid that is used to speed up the lung development of preterm babies. It helps the babies lungs produce surfactant, which is a lubricant that keeps the wet tissue paper of your lungs from sticking together and collapsing; full term babies produce this, but preemies do not as the lungs are not developed enough yet. Just as a side note, I have had shots for everything. I've been bitten, hit, lacerated, exposed to and generally covered in any bodily fluid you could imagine in my career. I just take the stitches, the blood work, the shots just as a course of action and go home and drink a beer. Up until today I thought that the Hep B antibodies (both cheeks!) were the worst ever, but man! That Celestone stuff stings! There is one more shot in my future, so I'll be limping on the other side today. Quinn thought that was hilarious and that Mommy was an extra "brave girl". You have no idea, wee man.

"If it ain't one thing, it's another." According to parents of twins I know, that is (or should be) the family motto for everyone with multiples. I know what will happen, will happen and it is totally out of our control. I'm just a little concerned as I'm running out of things to paint. ;)

Walking Softly

[originally posted to Facebook Tuesday, January 25, 2011 at 9:56am]

Well, today is a "special" day as my son would say. Today is the ultrasound in the high risk clinic where we scan my little Wyatt for any and all "soft" markers for chromosonal problems. These clues are known as soft simply because their presence isn't diagnostic, but rather potentially indicative at best. There are also a lot of ratios and probabilities to consider. To be honest, the math makes my head hurt.

Once again, for those of you playing along: Trisomy 21 is probably better known to you as Down's Syndrome. We all generally have an idea of what this entails, but here's the Wikilink anyway: .

Trisomy 18 known as Edward's Syndrome. It has a very low survival rate. .

Trisomy 13 is also known as Patau Syndrome. It also has a very low survival rate. .

Quite a few of you have asked what some of the markers are, and I will do my best to provide an answer, if not a link that explains it clearer and more concisely than I would. So, saddle up and get yer learn on.

These markers are generally used early for screening purposes:


Basically a mineral deposit in the heart that may or may not appear bone like. 88% are only in the left ventricle, 5% are only in the right, and 7% are biventricular. It is suggested by current research that the biventricular, right sided, and generally less popular types are more indicative of chromosonal abnormality


Dilation of the kidney where the ureter meets it. This can happen on it's own, however in the presence of other markers, it become significant.


There are supposed to be two arteries and one vein in the umbilical cord; the arteries take away the deoxygenated blood from the baby to the placenta. Alone, it is not indicative of chromosonal defects, yet it has been associated with renal and cardiac problems. Together with other markers, it increases the risk of finding a chromosonal problem.


This is the fetus' bowel showing up as bright as bone on the ultrasound. Alone, it has been associated with cystic fibrosis, infection, bowl malformation, intra-amniotic bleeding and intra-uterine growth retardation. Together wih other markers, it shows an increased risk for Trisomies 13, 18, and 21.


Here we are with our friend the nuchal transparency again. Since this is done earlier in the pregnancy, I don't think it will be looked at today. One more thing of note: it was explained to me by a nurse very much in the know that since Wyatt and Zoe's were done much earlier than Quinn's, the results are a little more significant (ie: larger numbers on a smaller baby). Alone, it can also be indicative of congenital heart defects (which we knowWyatt has already), or it can be a flag for Down's. There has also been associations with other abnormalities that are not chromosonal in nature (ie: skeletal, etc).


Dilation of the ventricles in the brain. Does occur on it's own, but incidence with Down's Syndrome (Trisomy 21) is very much increased. Can resolve on it's own as well, although unlikely.


Found on ultrasound between 14 and 24 weeks gestation. 50% of fetuses that have this have Trisomy 18; inversely 10% of those with Trisomy 18 will have this as the only marker. As far as I know, this has not been identified in our case.


This part of the brain collects cerebral spinal fluid. When dilated without the presence of ventriculomegality (but with the presence of other markers) it is indicative of Trisomy 18. It is also rarely seen in the presence of other, non chromosonal disorders.

These markers are very useful in later comprehensive ultrasound (that I will be having today):


Useful in predicting Down's Syndrome. Also occurs with situations such as Fetal Growth Retardation.


See short femur length.


Absent or short nasal bones increase the risk of a Trisomy 21 finding.


A bending or kink in the fifth or "pinkie" finger towards the rest of the fingers. This is found in 60% of people with Downs. However, it can be found isolated in the general population as well.


Basically the foot looks like a rocker on a rocking chair. This is generally found with Trisomies 13 and 18.

These markers that have NOT been established for practice (due to lack of research, mainly) but might be useful:


A flattening of the head. Unreliable as there isn't enough variance between "normal" and Trisomy 21. More research is needed as there may be a link for Trisomy 18.


It has been noted that there appears to be an increased incidence in flared iliac bones in Trisomy 21. More research is needed in the general population.


Infants with chromosonal abnormalities generally have small, low set ears. It's a bit tricky to see on an ultrasound, but ear length can be seen occasionally.


This is a separation of the big toe and the next (as flip flops or thong sandals would do to your foot). 45% of children with Trisomy 21 (Downs) have this although the statistics vary. It is also unsure whether this occurs in the regular, non chromosonally abnormal population.

Other findings that we (thankfully!) have not run across:


A protrusion of intestines, liver, etc OUTSIDE of the fetus' body. Occurs with Trisomy 13 and 18.


Can occur with or without genetic involvement.



Extra fingers and/or toes.

And there are more, such as clubfoot, overlapping fingers, clenched fists, etc, etc, etc. I unfortunately do not have the statistics on these.


Whew! That's a lot to absorb and I hope it helped. I hope the ultrasound brings us a little piece of mind as well as this is the stuff that keeps me awake at night. Once again, it doesn't always pay to be a nurse...

As a good friend of mine pointed out the other day "hang on to hope... that's what it's there for".

Trust me, we plan to.