Olympic Spirit

As much of the planet knows, we are smack dab in the middle of the Olympics.  My news feed has been awash daily with national pride, good natured ribbing and sadly, some not-so good natured politics.  My favourite posts so far are from the parents who are winning silver in their hair from the "sports" that their kids are reenacting in living rooms around the world.  We too have been affected by the spirit of the 30th Olympiad, but not in a way that you might think;  there have been all sorts of medal winning moments here as of late but you won't see any of them replayed on the news.

Last Monday we trekked to the pediatrician's office.  Fortunately for everyone involved, it wasn't a repeat of our previous trip.  We decided to be ahead of the game by confirming the appointment properly twice and arrived over 15 minutes ahead of schedule.  For our efforts, we were rewarded by getting in early;  the secretary mumbled bitchily about the people ahead of us being late, so our appointment time would be moved up.  (Sha-ZAM!)

Zoe, our little mighty mite, is now 10.06 kg (22 lbs) and her older brother Wyatt is 9.06kg (20lbs).  Zoe's weight for her (corrected) age scores her within the 50-75th percentile , while Wyatt is bang on at the 50th percentile for his corrected age on the Ds charts.  Their length has also shown improvement as Zoe, at 75 cm (30 inches) holds her ground at bang on the 25th percentile, while Wyatt has jumped up to the 25-50th percentile at 73 cm (29 inches).  That's great news as I was beginning to fear that they would be tiny forever. 

I found myself irked at a couple of questions that the pediatrician asked.  Such as "does he know his name?" I had to stop and count to ten at these moments and remind myself that she only sees him once every 3 months.  He has come so far since our last appointment that she has a lot of catching up to do.  As we went through the list of accomplishments and goals that we and our ICDSP worker have for him, the subject of the sleep study came up.  We did not receive any results of any kind after his ordeal study and to be honest, I was a little annoyed by it.  As it turned out, she did receive results (in June).  According to the report, Wyatt's apnea levels were within normal limits at all times.  However they did note that he was some snoring at various points, the cause of which was difficult to assess due to... [are you ready for it?]...  "loud parental snoring".  I think I laughed and quipped something about a family of large tonsils, but I could have quite nicely crawled under my chair and died of embarassment.  Did you see the pallet I had to sleep on?  Puh-leeze.  In any event, there are several things with this: 

1) Any higher pressure in his lungs is not due to sleep apnea.
2) He does not have sleep apnea so surgery is not going to be as scary. 
3) I'm betting they will move his surgery date up (due to the pressure being caused by other things).  

Finally, my favourite:
4)  Wyatt may not have sleep apnea, but I probably do. 

We've been chuckling about this for quite some time, despite my mortification.  Sean was more than happy to regale our ICDSP worker when she arrived Monday.  I was in and out with Quinn as we were in the garden staking up our tomato plants, but when not listening to Sean's stories of my snoring, she worked on several things with Wyatt.  He's had a little plateau as of late with the mobility, so I could almost hear the frustration in her voice as she said "He's so close to sitting up, he's got all the parts, he just needs to put it all together".  I agreed and then we discussed working on his ball rolling and sitting exercises.  

The very next day, Wyatt decided to take matters into his own hands.  Mid morning, Quinn looked over to find Wyatt sitting up in the corner.  Excitedly he pointed it out and we all clapped (including Wy, who instead of clapping, raises his hands and waves/Kermit the frog flaps yaaaaaaayyyy! ).  I didn't think much of it as he was right beside a lot of objects that he could have pulled/pushed himself up on.  Later on, in the middle of the floor, he did it again!  And again!  Four times in one day, twice witnessed!  It was amazing.  That was a gold medal performance if we had ever seen one.  It didn't stop there either: the next morning as the babies were exploring the living room, Wyatt was really straining to peek up over the edge of one of the toy baskets.  I casually remarked "Geez Wyatt, if you want to see what's in there, you should sit up!".

So he did.

He leveled his gaze at me, pushed backwards with his arms and pushed himself into a sit.  Then he grabbed what he was going after out of the basket.  It was phenomenal.

Wyatt decided to go for the triple play when he learned to roll the ball later on that same afternoon.  We were sitting with our legs in a V-shape, to allow the ball to roll between us.  Now, previous to this, we would start rolling a ball and Zoe would zip by and run off with it.  It would not matter what type of ball it was either;  large, rubber, tennis, O-ball, we have them all.  We'd start with one, she'd plop herself down in my lap, intercept the ball and be gone!  I'd look at Wy, take another ball out of the basket and roll that one to him.  He'd eventually hit it back to me and whoosh!  Here's Zoe again, going off in a different direction with a ball in each hand.  I thought initially "she's got both her hands full, now's our chance" and went for the third ball. Naturally, I was wrong and she, believing what we had was better, dropped one of the balls and went after the new one.  This would continue on until the basket was empty and she had a stash of balls over in the corner like some sort of obsessed sporting goods squirrel. It also wouldn't matter if I grabbed up one of the ones she'd already taken, as she'd take those back as well.  However, that particular afternoon, Quinn managed to keep her occupied for a few minutes.  We were using a ball with a rattle in it, so for the first bit, Wyatt would just pick it up and shake it.  Then he would rattle it a few times then push it towards me with the back of his hand.  Then he would just roll it towards me.  We were only playing for a short time, but it too was outstanding.  I tried to mix it up a bit with telling him to "shake it!" then "roll it", which he did, flawlessly.  Once again, he has shown us his own unique learning curve of "nothing, nothing, nothing... mastery!" He has shown us again to never lose hope.  He will get there, you just need a little more patience.

Zoe is breaking family records left and right for her physical prowess.  She figured out one day not too long ago that she could climb me like a rock wall.  She digs in her tiny fingers and will use her teeth and toenails if necessary.  It's cute, scary and, well, painful (for me) at times.  Once she figured that out, it was only a matter of time before she made it up to the couch.  Then the couch became a trampoline.  To her credit, she's only vaulted off the couch twice, but I can't tell you how many times I have grabbed her off the arm of the couch as she tries to use it as a pommel horse.  Never mind the silver, I may not have any hair left by the time this one reaches adolescence.

She's also shown a little more interest in her twin as of late.  They are always aware of each other, but other than a fleeting moment here and there (such as her trying to pull him up to a stand by his ears or removing some cherished object that he is currently enjoying), they as most children their age, tend to parallel play.  I've found them working together on several instances, an idea that I have to admit that I can find a bit unsettling.  One of their newest tricks is what we call "boosting the signal".  Before, if one cried, the other would look over as if to say "what's your problem?"  Like this:

"WTF Dude?" (2 days before their first birthday)

Now, if one cries, the other will do the same to make sure they get heard.  I've watched the other look at the crier first to assess the situation and then respond with a yell of a similar pitch, volume and timbre.  It is... freaky.  Especially when there are no tears on the second twin and the keening stops the absolute second the first twin does.

I've also found Zoe sitting down next to Wyatt and chatting to him.  We were coming in from one of our many shopping trips the other day and I had only managed to get Zoe out of her car seat in the living room before having to quickly run back to the door (to assist Sean with some armful of awkwardness he was trying to bring in).  By the time I had walked the 30 feet back to where they were, Zoe had sat down on the floor next to Wy in his car seat and was babbling away at him.  At one point she leaned in and patted him on the head as if to say "S'ok.  Mom will be back soon.".  On my return however, she wobbled off pretending she had more important things to do.  Typical.  Wyatt however, beamed at her from his chair and said "Zazazaza!".

If you're keeping track of Team Logan's teeth tally, we currently have Quinn at -1 (+3 adult), Wyatt at +2 and Zoe at... somewhere between 8 and infinity.  Seriously, it's really sharp in there and there was a period of a week where I was trying to peer in/feel around for a total.  I finally figured out that if I dangled a cookie up over her head, she'd open her mouth and look up.  Works for both toddlers and pets.  I discovered then that she has 11:  eight in the front and three molars.  Apparently, cuspids are still for losers.

Quinn is having all sorts of adventures that only a boy of six can appreciate.  He's discovered that he loves day camp, which is awesome.  They swim every day, hike, climb the rock wall, do crafts, archery... all sorts of outdoorsy sporty stuff, which he likes very much.  We like the fact that it gives him a break from the babies, puts him with kids his own age and then runs him bloody ragged.  He tells us of his day in a sleepy voice once he gets home and assuming he stays conscious through his dinner, he retires early to do it all over again.  It is awesome.  He is growing up so damn fast; at least this way he has some great summer memories that don't involve the TV or waiting patiently for one of us to finish something so that it can be his turn.

When he's not exploring the great outdoors or playing with his siblings, Quinn continues to draw.

On my beer fridge, yet.

When I found this international salute, I was stumbling blurry eyed to my Tassimo, which sits on top of the mini-fridge.  I called him over and asked him about his artwork;  he proceeded to whip out his globe and not only show me each of these countries, but also the capitals.  Wow.  That's a lot from a 6 year old, especially before 8 am (and more specifically, my coffee).

We are not a sporting family, but we have won more than our fair share of victories here lately. They probably seem not much to most people, but to us they are world class performances.  Wyatt works harder every day than other kids his age.  Right now they are all doing their own thing as they grow:  Quinn is picking at his dinner in larger quantities and is now going to bed early, Zoe eats everything that isn't nailed down and has given up sleeping at night and Wyatt sleeps only at night and during mealtimes.  Just as the Olympics started, lots of folks were talking about the "Olympic Mom" Best Job Commercial from P&G. I can relate to this.  My family is a lot like this.  Watching Wyatt sit up for himself the first time, after months and months of trying... I can't even describe properly how that felt.  No crowds roared.  No medals were awarded,  but, I felt so incredibly proud as I hugged my child and cried.  I relate a lot more to this one too, one that does not get the same amount of airplay:

The rest of the world may not see Wyatt as I do... yet.  One day they will.  One day he and others with a learning disability will be able to live their dreams, free of prejudice.  Soon.  Until then, we will continue to press on, through the pain and the rewards alike.  Come what may, my children, are always going to be 1,2,3 on the podium as far as this judge is concerned.

What a Long, Strange Trip it's Been

The last little while has been a complete blur of appointments and late nights.  Copious amounts of carbs have been consumed (and cheese, most often together).  Much sleep has been lost or interrupted.  Tempers have been a bit short on all accounts, including both of us, the kids and the people that we have had to interact with.  At various points, this past week has seemed to never want to end.

It started the day after the birthday party (Monday, April 23rd).  We had an OT visit where several things were looked at in detail.  One, how well Wyatt's mobility has come along in the last few weeks.  Since the last update, he can make his way across the floor, half dragging, half commando crawling.  We have not seen him sit up (by himself) since the party, however he has come very close several times.  It's probably like the rolling thing;  we won't actually see him doing it for a while.  We'll just look over and assume he just teleported, or in this case, was magically repositioned while we weren't looking.  We are trying to get him to understand what his legs and feet are for (other than additional hands);  we have a variety of sitting/kneeling/bent over positions for him to practice and to get used to putting some weight on his legs.  So far, not much, but we are trying.  Point of interest number two:  how far his eating skills have come in the same amount of time.  We talked about finding a good time for another speech-language assessment before the OT left.  We should have an appointment by our next visit.

The following day (April 24th) meant an appointment with the pediatrician for both Wyatt and Zoe.  I don't know about you, but a snotty receptionist can really set me on edge.  This one in particular seems to have majored in Passive-Aggressive with a minor in Bitch.  The day before, she had telephoned to confirm our appointment.  During that call, no actual appointment time was mentioned when she spoke to my husband; I assumed I had the correct time listed in my phone.  You will imagine my surprise as I blustered into the office, 15 minutes early (for a change!) only to be met with cold silence.  Once I had dug out our health cards and settled my daughter (who had just had what could only be a harrowing stranger experience in the elevator with a kindly old man who told us all about his twins), I turned to face the receptionist.  She barely made eye contact, quickly scooped up the cards and said quietly "I just called your house."  "Oh?"  I answered, confused.  "What's wrong?"  "You're half an hour LATE!" she informed me in clipped tones, barely containing her hostility.  I whipped out my phone to check the times and surprise, there was no match.  For some reason, our appointment had been moved to 9:45.   My husband (to the receptionist's surprise) walked in a minute later and reminded her that she did not mention a time on the phone and therefore, did not confirm the appointment properly. Mistakes had been made all around.  There was another period of awkward silence, where I prepared to get comfortable in the waiting room as I figured she would now make us wait.  A few minutes later, she approached the babies with artificial sweetness and told us that it was time to come in.  We maneuvered our beast of a stroller through the narrow hallways into the exam room and began to get them undressed for their weigh in.

Aside from that little bump, the rest of the appointment went well.  There was no one else in the office at that time, so the doctor was able to see us.  Zoe now weighs 9.14 kg (20.1 lbs) while her now little brother Wyatt weighs 7.95kg (17.49 lbs).  They are both small for their age, at 70cm (27.6 inches) and 67cm (26.3 inches), respectfully.  Their big brother Quinn was 25 inches at birth, just to offer up a little comparison.  Both rank somewhere in the 5th percentile for height on their respective charts (although Zoe has crept up a bit in the weight department).  Numbers aside, both are happy, healthy infants who are doing well in their own way.  Wyatt attempted to sit up while we were there, which made the doc happy.  Zoe wasn't too keen on walking barefoot on a cold floor, so she did not get to show off her running prowess.  The doc made sure that we got an actual appointment card this time and we took our leave.

Wednesday (April 25th) was the ENT.  Sean took Wyatt by himself, as it was an early morning appointment and it interfered with Quinn's schoolbus time.  I was expecting the boys home shortly after 10 but they didn't arrive until 11:30 or so.  I was a bit confused at first, but Sean explained that our bad doctor karma from the day before had spilled over into this appointment as well.  Although they were on time, the ENT was not.  After sitting for almost an hour, the doc wandered in the front door, ignored what was now a packed waiting room, went straight to the back and had the first patient sent in. It was apparent that he was in a shitty mood by the time Wyatt's name was called;  he then proceeded to take it out on Sean.  We haven't been exactly diligent with remembering to put drops of mineral oil in Wyatt's ears (to keep the wax loosened) and the doc let Sean know a little more brusquely than necessary that this wasn't cool.  In fact, his tone suggested negligence.  He even went so far as to accuse Sean of using Q tips on him which, if you don't know, are a no-no with ears as they are self cleaning (Q tips just impact the wax).  Sean tried to explain how we never use Q tips and clean only the external ear and when that was completely ignored, he half-desperately threw in a "you know my wife is a nurse, right?"  for good measure.  This all had very little effect on Dr. Grumpypants who continued by demanding to know when Wyatt had a specific hearing test done.  We do keep on top of all his hearing appointments, but lets face it, we have no idea what exact tests are taking place, just what the results are at the end.  This was not an acceptable answer either and prompted him to place an angry call to the audiologist's office. After extracting the gunk from Wyatt's ears (which, wasn't too bad at all), the boys were then sent back to the waiting room to wait.  During that stay, Sean overheard the secretary talking to the audiologist's office and learned that the specific test that the ENT was peaking about was not done at the last appointment... as it had been done at the one before.  This fact would have been apparent if he had bothered to read Wyatt's chart. A more sheepish ENT called them both back in to let them know the results of the hearing test and that based on that information and the examination that he had just performed, Wy's ears are just fine, thanks.  See you in 6 months.

Flash forward through a whirlwind of my 6 year old's actual birthday (April 26th), one twelve and one 16 hour night shift (April 28th and 29th).  It was now Tuesday of the next week (May 1st) and time for Wyatt's sleep study at Sick Kids.  Prior to this, we had to fill out a sleeping/eating log for 10 days;  it was only through some miracle that I remembered to yell at someone at the last minute to grab it as we were going out the door.  Even for overnight, I had to take a lot of stuff for me and one baby.  Jammies, diapers, wipes, cream, pillows, emergency bottle, Tylenol, toys, 'whoosh whoosh bear', the stroller to push all our stuff around in... plus I brought the laptop "just in case".  Although it turns out that there is a complementary TV in the room (and free WiFi!), I wanted the ability to play a movie or write/fool around on the internet if I couldn't sleep.  I figured that, much like sex in the champagne room, there was no sleep in the sleep study.  I had no idea how right I was going to be. 

It was a good thing that we arrived early as it gave me a little extra time to get lost.  It's a pretty straightforward hospital in most respects, but you have to trust me, getting lost is a specialty of mine.  Sean claims that I have a compass in my head like everyone else, but unlike everyone else, mine is broken and just spins.  I do make up for this with my map skills...  To prove this point, seconds after I discovered a wall map, I found the Atrium and the elevators that I needed.. 

Sick Kids is a fabulous place... I have mentioned this before.  The main elevators are a sunny yellow and the whole place looks like it was designed by a toymaker.  However, if you have vertigo like me, it's a little unnerving getting from the central elevator hall to one of the quads. 

You can see the yellow elevators on the left.  Photo courtesy of skate_simmo

We were greeted by our Tech who assured me that they do sleep studies on babies all the time. In fact, last week he had three babies there at the same time (the lab has four beds).  We were shown to our room and I set everything up while Wyatt got to play in his crib a bit and stretch out after the car ride.  I realized somewhere during my exploration of the room that psychiatry has ruined me:  the entire time I was setting up, all I could think of was how unsafe the room was.  Including the closet, which was just the right depth and had a bar in there that someone (small) could hang themselves with.

Our room.  My daybed is in the back there

My bed.  I've slept on a lot worse, trust me.  For my convenience, I'm right next to the hanging closet.

Baby logistics is another specialty of mine.  Knowing that I had to feed him for him to go to sleep and assuming that there was a tangle of wires in his future, I had to work out how we were going to do this.  Our Tech and I talked about it and he would come back to wire my son up when he started to look a little sleepy.  I tried to make Wy feel as comfortable as possible;  he had a few toys there, a few homey smells and I set up the laptop and streamed some music for him (they have a radio on all night for noise and company).  He started to look a little droopy and I called our dude in to (literally!) hook us up.

For those that don't know, during a sleep study you are monitored for quite a few things.  Your heart rate, your breathing and your oxygen/CO2 levels are important.  They also monitor brain waves so that they know how asleep you really are. Finally, they monitor movement, to see how restless you are.  Basically this translates to an ECG, an EEG and an oximeter.  There was also a camera in the room and an observation window if needed.

In total, there were about 20 'leads' or wires about his little person.  Two on each of his legs, four on his chest and the rest on his head.  There was also a O2 sat (oximeter) on his toe an a CO2 monitor on his chest (that was relocated to his back in the middle of the night).  He looked like a little Borg.

Resistince is futile.  (He's not crying BTW, just mid-babble)

He got a little Teletubby hat made out of some Surgifix (stretchy tube mesh that they put over IV's and lines and things) to keep the wires on his head.  The Tech put a towel over the lead box on the bed hoping that Wyatt would forget it was there and I was given the OK to feed him.  I set up shop beside the bed, gingerly pulling on the wires all the while hoping there was enough slack.

He wouldn't sleep for love nor money.

Usually he falls asleep during his bedtime "snack".  No dice.  I whipped out a bottle of homogenized and heated it up for him.  Nope.  At one point I  turned on the end of the hockey game, hoping he'd get tired (he watches a lot of hockey with Daddy if he can't sleep at night).  We called Daddy, we sang songs, we rocked, we burped, we got Tylenol.  Finally, about 10:30 he went to sleep in my arms.  I carefully tucked the towel underneath him so that he would not immediately roll on the wires (or catch them in his sleep), put up the side rail and tiptoed to my cot.  I didn't realize how tired I really was until my eyes closed while I was typing on the laptop.  I shut everything down, pulled the blanket over me and drifted off. 

At 2 am I woke to him stirring and was at his side a minute later when he started to cry.  Once he is down, Wyatt does not wake up in the middle of the night unless he is sick.  What I found when I got there was pretty much heart stopping:  all the wires were wrapped around his neck.  I sat my crying boy up and started to gently un-garrote him;  he looked like a kitten tangled in a ball of yarn.  At one point I had to go get the Tech for help as I was afraid of dislodging everything.  It took a bit, but we were able to free him from his wire-y prison. 

I am sooo tired!  I also HATE this hat!

For his trouble, he also ended up with a nasal cannula, which he also hated.

This thing is 'teh suck'.

You can bet that he was wide awake after that, so I put the radio on over the phone and held and rocked him.  He kept trying to pull out the cannula and that one purple wire in the photo above, so the only thing I could do was to put him on my left shoulder, tuck his one hand into my armpit, hold him (under the wires) under his bum and hold his other arm down with my right arm as it held him over the wires.  And rock.  Which I did...  For a solid hour.  I thought he was asleep at one point and tried to put him down but it didn't work as he was crying and rolling and threatening to get tangled up all over again.  Finally, he was a sleeping rag doll again around 3:15 and I tiptoed back to my cot.  I had a hard time settling as well;  I think I got back to sleep around 4, although I woke up several times to unfamiliar hospital sounds.

My eyes opened again at 10 minutes to 6, so with a sigh, I started quietly packing up the room.  The test ended at 6 and our Tech was there promptly to unhook Wyatt from his torment.  We turned all the lights on and found my little lamb sound asleep.  I hated to wake him up but it was time to go.

Wakey, wakey Wyatt.

The conductive jelly that was in his hair, despite the reassurance that it was water soluble, would NOT come out with warm water and a cloth.  I got him dressed, packed up the room, stripped the beds and was out by 6:30.  I managed to get lost a completely new way before (gratefully) finding the Whaaambulance and my family waiting for me outside the Elm St. entrance.  We rocketed home in the fog and by afternoon, all 5 of us went down for a nap.  After a nice bath, Wyatt also had 95% of the tape and goo out of his hair.

My week did not end there as I had a 12 hour night shift the next night (May 2nd).  I also start a new 4 day tour tomorrow (May 5th) but the kids have settled back into their routine.  I won't know the results of the study for a while.  In fact, I'm not sure how I will find out exactly;  we will probably hear from one of his doctors and/or get a phone call or a letter.  I do know that while I worked the night away, everyone slept very well at home, in their own bed. 

It's been a busy, crazy, cranky and tiring spell for Team Logan, but we have come out the other side of it.  I know I will be happy to see Wednesday morning (May 9th), when I start my next run of 5 days off. One of the good things about blitzing through a bunch of appointments is getting them all over with... which we have, until the next go around in a few months time.  In the meantime, we won't be idle waiting for results.  Instead, life will go on as it does for my raucous household.  Full of laughter, life and love.

Now that's worth the price of a few crappy nights sleep, isn't it?

Down, But Not Out

As I was pulling on my "Mom uniform" this morning (yoga pants, random oil stained T-Shirt, slightly too-tight hoodie, raggedy pony tail), two things occurred to me.  The first thought involved cursing with the realization that I was going to need socks (AKA Satan's footwear) for my eventual run to Costco.  This irritates me every time as I abhor socks and rarely wear them.  Even in January.  In Canada.

The second thought involved a bunch of new information about the twins, especially Wyatt.  Miracle upon miracles, the socks came easy, the Costco run (and most of the day) is over, the socks are off again.  Here I am, ready to share.

Last Wednesday, Wyatt had a trip to the cardiologist.  I was a little antsy as this was the first trip that Hubs had to do on his own (as I was at work).  In typical Logan form, the entire thing was a fiasco.  I won't spoil his story, but I will say there was a garbage truck, a bunch of staring people and a broken elevator. There was also some unexpected news.

At our last visit, we were told that we were looking at pushing Wyatt's surgery off to somewhere between ages 3 and 4.  As of this visit, the plans have changed.  There is some concern about the relative pressures in the chambers of his heart.  The thinking now,  is that since he is doing so well (and is still largely asymptomatic), that we will be doing his surgery sooner rather than later.  We are waiting for an appointment with the surgeon at "Sick Kids" (The Hospital for Sick Children) who will assess Wyatt and ultimately make the decision on when he will do the surgery. 

Let's just cut to the chase and say this was not the results that I was looking for.

I don't know why, but I was hoping that the hole in his heart was closing, or was doing so to such a degree that we could wait a few years.  I know, it is a long shot, but with the results that we have had so far, a mother can hope.  And I did.  What else could I do?

Sean called me at work when he got home from his doctor adventure.  I have a post-grad student currently, and all he heard me say after "How did it go?" and a long pause was a tiny "oh".   Despite the presence of logic, despite my understanding of the situation, it still felt like something had kicked me in the chest.  No matter how straightforward this surgery is going to be, I still don't have to like it.

Once we have a surgery date, we can start planning;  without that date, things are pretty much up in the air for the next, oh, eternity until we have that particular date.  I am trying very hard not to let that stress me out.

Tuesday morning, we had another double booking adventure.  Fun! (No, not really...) Wyatt's therapists were here Monday and as far as we knew, we only had our eldest son's parent teacher meeting at 8:30 am the following morning.  Right in the middle of the session, we got a phone call from the pediatrician's office reminding us of our appointment the next day.  At 9:30.  At the opposite end of town.  Yikes!

Our day went something like this: both got up, he got eldest ready for school and then took him there for the parent teacher meeting.  In the meantime, I got the babies up, fed, dressed, bundled and in their car seats, ready for Sean's return at around 9.  We loaded everyone up and shot across town.  We were only a few minutes late (thanks to the worst parking lot EVER) and only got the secretary's half-assed snarky disapproving face.

Once in, it was another episode of unloading, undressing, handing off and handing back of babies as we got them weighed and ready for the Doc.  Wyatt is currently 14 lbs, 13 oz while his "little" sister is now 16 lbs, 14 oz.  Zoe is also 2 cm longer than her brother.  The effects of the hypotonia and delay are getting more noticeable.  However, on the positive side of things, both are growing steadily on their prospective charts.  The pediatrician was impressed by Zoe's level of mobility and Wyatt's current functioning (learning to sit, discovering feeding himself and chunkier textures, no choking, happy as a lark).  All was going pretty swimmingly until Wy's physical assessment when she found tiny petechia on his chest and sent us immediately to the paeds clinic at the hospital to get his platelets checked.

[Record scratch] Pardon?!

I know it sounds innocent enough, just a little poke for some blood work, but to me it was a whole lot more.  One, the last time the pediatrician said "oh..." and pointed at something, Zoe ended up having surgery.  Second of all, thrombocytopenia in an 11 month old (6 weeks corrected) boy with Down syndrome could mean any number of things, up to and including leukemia.  People with Down syndrome have a low risk of most cancers, but they have a high risk of leukemia.  If it wasn't that, what was it?  How would this impact on his eventual heart surgery?  Was it related?  My head was spinning and my chest was tightening up as Sean dropped myself and the babies off at the hospital as he went to retrieve Quinn from school. 

I had to hold him down, which was anything but pleasant.  We are so lucky that he is a tough little guy as after a few snuggles, his big tears dried and we hung out to wait for results.  Both babies snoozed in the stroller while I texted the BFF madly as we swapped medical diagnoses and mega-grease lunch ideas back and forth.  After half an hour, I returned to the clinic.  I was only there a few minutes when one of the nurses called me over and told me his bloodwork was fine.  I swear my knees buckled in relief, but I'm sure all they saw was my grip tighten on the stroller as I exhaled.  The pediatrician had added a TSH to the order set, (simply because he would have that tested at about a year) but that would not be back for a while.  Since I had the info that I wanted, I chose to go home.

On the way home we totally greased out at Burger King.  Whopper, poutine, coke and an hour later, another damn Whopper.  Yes, you heard me.  I consumed enough calories to feed a family.  By the time I was headed for my nap (in the hopes of getting my chest muscles to stop hurting), the office had called to say that all the bloodwork was fine.  Thankfully.  Thank you universe... who/whatever is listening.  Thank you.

The last week has been riddled with drama.  In all fairness, we've been lucky for a while;  I guess it was our turn.   Like any parents, we get knocked down from time to time.  Without trying to sound like a Chumbawumba tune, we get back up again.  And again.  And again.  We have to.  For ourselves and for our family's sake.  Once we get our date, we will plan and it will all fall into place as it should.  It will suck, but it will happen and we will get through it as a family.  Of that I can assure you.

But, as the song says, I get back up again. You're never gonna keep me down.  Even with stupid socks.

Milestones

Another week, another round of appointments.  I don't know if these appointments are getting easier or if I've just completely accepted that I will be doing a lot of this for the rest of my days.  Yes, getting to and from can sometimes [most of the time] be problematic with silly scenarios that I [have a knack for] seem to get into.  Lately I've been letting it all roll off me, which is made a lot easier as the news in these appointments has continued to be very encouraging. 

Monday morning was our follow up with the Neonatal clinic at the hospital.  Premature and underweight babies are at high risk for developmental delay so naturally Zoe was referred.  I initially thought the appointment was for both of them, but after an awkward few minutes at the desk I was informed that they don't follow 'Down syndrome babies' (gah) as they leave that up to Infant and Child Development.  Zoe had an appointment to herself for the first time since her surgery.  This was her official 4 month (corrected) visit.

The first little bit was typical:  weigh her in, measure and report.  According to the scale there, she weighed 13 lbs, 4 oz which I think is a bit more than she actually does (they left her dress on, so that could have added a few ounces).  Then it was meeting with the OT (Occupational Therapist) who laid her on the floor and checked out her development.

According to the Nippissing District Developmental Screening Tool, at four months of age a child should be able to do the following:

• Turn their head from side to side to follow a toy
• Glance from one object to another
• Turn [their] head towards a source of sound
• Make some sounds when looking at toys or people
• Brighten to sound, especially to people's voices
• Respond to you by making sounds and moving arms and legs
• Laugh and smile
• Finish each feeding within 45 minutes
• Lift [their] head and support self on forearms
• Bring both hands to chest and keep head in mid-line while lying on back
• Hold head steady when supported in a sitting position (ie:  in an infant chair or on your lap)
• Hold an object briefly when placed in their hand.

(© NDDS Intellectual Property Association, all rights reserved). 

Now, according to the OT, Zoe is scoring in the 50th percentile for her real age, not her corrected one; she can do this list and so much more (roll to her stomach, roll back to her back, hold objects in both hands, etc).  This is fabulous news... albeit not terribly surprising, given "The Princess" (as dubbed by the NICU nurses) has always been a superstar.

Yes, I can multitask.  I learned it from my Mommy...

The Neonatologist was simply enamored with her which also isn't too surprising as she is a real flirt when she is not screaming.  After a few physical checks (heart, lungs, eyes, ears, fontanel), he was done and so were we and we received our next appointment for late November.  We spent the rest of our time at the hospital visiting with Mommy's colleagues where both babies were held and snuggled by all.  Quinn didn't do too badly as well... he scored some Timbits and covered the office in original artwork.

...And on the way home I stopped traffic.  Yes, you read that right. What would a "doctor adventure" be without the "adventure" part?

When we had left in the morning it had just stopped raining;  it was quite possibly the first rain we'd had in a month.  The stroller was packed with rain gear: stroller cover, giant umbrella, a rain coat for Quinn.  At some point while we were inside the skies had cleared and the sun had decided to beat down once again.  I cursed myself for leaving my sunglasses at home and forayed out into the blinding light.  We were almost panting by the time we reached the bus stop and there was no shade to be found as the sun was almost directly overhead.  By the time the bus came we were already very hot and in need of something cold to drink.  I told myself that when we reached our connection if there was a wait we would go into a nearby store and get a drink, which we did, to cool off and kill a little time.  Once we left the store I started cursing as I realized that the curbs and sidewalks on all four corners of the street were torn up.  Our bus stop was missing in fact.  Damn and blast!  How were we supposed to get home?

I ignored the "use other sidewalk" signs as the bus I needed drove on this side of the street.  I deked up into a handy driveway to hopefully cut through... and found fences everywhere.  We were trapped.  I had two choices:  1) walk back to the "corner", cross the street, walk two blocks down the street, cross and walk back up to the nearest stop or 2) improvise.  I was also wearing strappy slip on sandals with a two inch heel that sounded like a good idea in the morning, but now were rubbing the skin off my feet as they swelled in the heat.  Vanity, thy name is pedicure.

We chose option #2.  Traffic had been reduced to one lane as there was an enormous digger currently gouging out the existing sidewalk and dumping the refuse into an equally enormous dump truck.  At a safe distance from these behemoths was a middle aged [read:  older than me] woman holding a slow/stop sign.  I chose to walk right up to her through a cordoned off area and ask her where the bus stop on this side of the street had gone (it was missing too).  She motioned and yelled something about a block ahead of where we were standing. I could barely hear her over the machines but eventually I made out that she was asking how old the twins were.  I let her know, she looked at each of them lovingly while Quinn stood, mouth agape watching the metal dinosaurs claw at the earth.  I had to interrupt her momentarily to ask her how I was going to get there and she smiled and answered "Well, I'm going to stop traffic for you".

So she did.  She stepped forward, expertly held out her hand and swung that sign around to "STOP" so that I could push the stroller (and Quinn) to the nearest bit of unmolested sidewalk.  On Main Street. In the middle of the afternoon.  It was crazy!  I sauntered down the middle of the road, the divider a foot or two to my left, past the giant machines (I have to admit I was a little spooked) and safely onto the sidewalk... a trip that had to take at least a full minute.  I could feel the traffic building up behind me and knew it had to be solid cars halfway to Orangeville.  I got to the sidewalk, flashed her a thumbs up and traffic started again.  I wasn't paying attention but I am sure I got more than one dirty look.  We opted to walk home from there;  it was a hot one broken only by a few shady spots which we took advantage of.  When Sean came home I regaled him with this story only to have him say "It's a good thing you had that giant umbrella with you for shade!"  Yeah.  Good thing.  (Dammit!)

Wednesday was a big day for both babies as we followed up with the pediatrician. Zoe weighed in (naked this time) at 12 lbs 14 oz and Wyatt a cool 12 lbs 9 oz.  Our mighty Micro-me has finally surpassed her moose of a brother (which is not surprising due to his hypotonia). They are exactly the same length,  58 cm (or almost 23') which is two centimeters more than Quinn was at birth.  (No wonder I needed that section!) According to the charts, Zoe started her life in the 5th percentile and has now moved up to the 25th. Wyatt remains in the 5th percentile.  At our last visit I asked how Wyatt was doing on the DS growth charts and was answered with "I wasn't aware there were such charts".  You'll permit me the mental high-five I gave myself when she added "...but he is at the 25th percentile on the Down syndrome Chart" this time.  Score one for Advocate Mommy!

She was quite pleased at their progress over all.  Zoe was in a bit of a playful mood and when she tired of rolling to her side and scrabbling to get the box of wipes, she started going after the paper on the table.  Even as I was pulling her away she continued to frantically grab at it with both her chubby mitts and try to eat it.  It was hysterical.  I had to hold her for the rest of the appointment (which was fine as she is content looking around).  When I put her down to change her she rolled over and tried to crawl to the paper mess again.  Our pediatrician was amazed and remarked that it was very unusual in a preemie that age to be so mobile and it was a testimony to the amount of floor time and the kind of stimulation they got.  (Mental high-five number two!  Yay!) 

"Globally delayed"?  I didn't get THAT memo...

We also got the official go-ahead to stop the formula top-up (oh thank you!).  It isn't as easy as just cutting it out at this stage however;  I have to taper everything.  First will be a week of top up with formula in every other bottle, then a period of every other feed having EBM only top up and then taking it from there.  I'm still going to have to pump to make sure that the supply isn't impacted either.  I may never be able to stop pumping after a feed, but time will tell.

That particular trip home was easy as Sean picked us all up.  I got to tell him how awesome all the kids were, including Quinn who patiently sat through yet another appointment and carefully wrote down everyone's weight and measurements.  It was a stark contrast to the outburst he had before the appointment (where he threw a fit and refused to go).  He's growing up too...

I know not all of our appointments are going to end so well.  There will be a point in the future where Wyatt will have his AVSD operated on.  However, I hope that we will continue to have good news and be validated by their development and good health.  I am aware that we may be "honeymooning" with the twins right now and that is okay.  With my return to work date coming fast I feel that we deserve this time together.  That is okay too.  We are moving forward, all of us as a family and meeting our own various milestones.  Right now everything, dare I say it, seems to be all right. Wyatt is just Wyatt and his DS is just something he has, like his blue eyes.  It doesn't define him, or his sister.  Or us either.  It simply is.

That, ladies and gentleman, is a milestone unto itself.  At least for me.

"...Eyes, Ears, Mouth and Nose."

I can't believe it's been over 15 weeks.  I don't know where the time went.

Well, that's not true.  I do know where the time has gone:  it's been a haze of feeding, bottling, diaper changing, dishes, laundry and doctor's appointments.  It's really the amount of time that has passed that is a bit staggering.  Another astonishing fact is that in the space of just under four months they have almost tripled their weight and gone from swimming in the preemie clothes to filling out 0-3 mos sizes nicely.  Amazing.

They've had a little help along the way tho'.  My enormous appetite and unquenchable thirst has guaranteed that they continue to get pints of Mommy's Finest at mealtime.  I'm still pumping afterwards for the "top up";  after they feed, they get a bottle of EBM with a bit of formula powder added in for extra calories.  The recipe is supposed to be 5ml of the powder in 90ml of EBM which gives them an extra 20kCal.  The top up bottles are currently 60ml, so you can see that the math does not easily line up.  Having a "mixed" bottle of extra in the fridge is just another step in the "kitchen chemistry" that takes up time and energy that can be spent somewhere else.   That's another mixer bottle to wash and sterilize and keep track of (as the mixture is only good for 24 hours, ergo, so is the bottle, no matter how young the leftovers in it are).  Instead, when I'm pouring each of the 60ml bottles, I throw in 2.5ml (or less) of the powder.  They are getting less formula than prescribed, but as you can see, they are not missing anything.

My little chubsters. Thanks to Penny for zapping out that annoying tag and making my babies even more beautiful.  Love, love, love it!

The top up is an annoying practice that my pediatrician has insisted that I keep up.  I realized the other day that (another) one of the reasons that I felt so remote from the babies is the lack of snuggle time after a feed.  Normally it's the perfect time to cuddle and yes, even doze off.  Not this Mama... I have to finish up with them and then put them down to have a Medela Moment.  It's one of those million little things that contribute to a big thing.  I'll be glad when I no longer have to force feed my little Strasbourg geese.

Wyatt is still holding on strong.  Other than chilly feet and hands (his feet are usually mottled to blueish) he remains mainly asymptomatic from his AVSD.  He's usually a bit mottled all over as well, so I just make sure that he is a little more warmly dressed than his sister.  We've added two new doctors to his roster as well;  last week we saw the ENT and Friday we met his Opthomologist.

Now, the ENT has been described to me as "gorgeous" (and by that alone, I fear I have given his identity away), and he is man-pretty... if you are into thin metrosexuals, which I am not.  He did however use an iPad the entire time, which I thought was pretty cool and very forward thinking of him.  Among the countless little differences that Trisomy 21 offers up are tiny ear canals.  Even with the smallest pediatric head on the otoscope, he couldn't visualize the ear drums to see if Wyatt has any fluid built up (DS kids commonly end up with tubes in their ears due to this).  All that flaky skin on the outside of Wyatt's head lives inside his canals too;  even with his fancy extraction machine and thrilling headgear, the ENT couldn't clear the canals enough to get down there. We have to go back in two weeks after I goop Wy's ears with mineral oil every day.  He doesn't totally hate it, which I guess is a good thing.

I had no idea what was in store for Wyatt at the ophthalmologists.  Many DS kids have eye problems including (but not totalling) strabismus, hypermetropia, myopia, astigmatism, weak accommodation, nystagmus, cataracts, glaucoma, keratoconus, blepharitis, presbyopia, watering eyes and frequent eye infections.  Since I am myopic with a bad astigmatism and have been such since childhood, I'm not too worried about him wearing glasses in this family.  However, I had no idea how they were going to test a baby.  First they dilated his eyes with Cyclopentolate (I asked as I wanted to make sure they were not giving him atropine with his heart issues).  The orthoptist first used a series of blinking lights, toys and cards to check for muscular abnormalities.  I was happy to hear that at this point there are none, but he should be frequently monitored.  The opthomologist used her own brand of thrilling head gear and saw that he did not have cataracts (my pediatrician seemed to think he did, although she did not voice this to us) and that he did not have retinoblastoma.  The latter not being prevanlent in the DS community; the babies in our family are routinely tested as our 2-D Cousin was diagnosed at a young age.  Hers probably wasn't the genetic type, but you can never be too cautious. Happy results all around, we'll be back in 6 months to follow up.  Since the pediatrician only referred ONE of my twins, I have to ask to have Zoe checked. Poor Zoe, always the bridesmaid...

My Baby blues are good to go!

I shouldn't really say that as Zoe ends up getting more face time than Wyatt.  As the puker and screamer of the duo, she spends a great deal of not-so-quality time with dear old Mom and Dad.  It still astounds me a) how much she can throw up and still gain weight and b) how LOUD she is.  Recently, she's managed to connect her hand to her mouth and we thought "oh good, now she can calm herself that way".  No, sorry.  She's managed to find a way to put her hand in her mouth and make herself EVEN LOUDER.  Apparently that was what she was missing;  amplification.  I guess to offset that (and to ensure we didn't leave her in a basket on the neighbour's doorstep) she learned how to giggle this morning.  A cute little "hee hee hee" that goes with her face-splitting grin.  She is cute, I'll give her that.

Is that a smile? Not the full one, but one nevertheless...

Developmentally, they both seem to be right in the "six weeks adjustment" area.  There are certain things that she is better at, and certain things that he is better at.  He babbles and coos more often while she is better with the eye contact and specific noises.  I'm trying to get them both to grasp at toys and I'm encouraging them to spend more "tummy time" and lift themselves up.  Wyatt seems to be the one closest to rolling over at present and is spending more and more time awake, which is fantastic.  I can't tell you how encouraging it is to have his sweet little eyes locked on me for minutes at a time as we interact with one another. 

I'm doing much better these days as well.  We're getting a little more sleep on the whole as they can push that 1am feed to 2 or 3am on average and to 5am on a good day (they generally eat around 9 or 10 before bed).  The days that they sleep through the night are few and far between, but they are there, which means there is a light at the end of the tunnel for all of us.  Well, until they start teething... (shudder).  The hormones are still horrendous, but I think I've figured out how to ride them out for the most part.  Thankfully, caffeine has been put back on the menu (along with the occasional beer) in small, yet well timed doses.  I'm not sure if it's a side effect of the hormones or what but I can enjoy a little treat without the fear of PVC's.  Even the tiniest bit of caffeine, chocolate or alcohol would get my heart tripping up, but for now it seems ok.  I'd like to think my organs got together and lifted the sanctions on the holy trinity.  "Dood!  We have to give her something!"  I kind of overdid it on the chocolate a few weeks ago... my weight started to creep up again as I was self-medicating with the lovely stuff.  I am happy to report with the advent of more sleep (and getting out to Mother Goose), we are back on track and down to our pre-pregnancy weight again.  Yay!  It's nice to hear things like "I think you've lost weight since this morning".  :)

Now the trick becomes getting as much time and effort into them before I have to go back to work.  I would love to take the full year off with them but unfortunately I have to disagree with Jessie J here... it is all about the money.  Hubby will thankfully take the second half as I return in September.  At least I get to start them on some cereal and get Quinn back to school first.  Should be interesting as I will have to take a Medela break every four hours...

"Head and shoulders,  knees and toes..."   Right now I think we have all these things under control.  (Until the next crisis, that is.)  For now tho', I'll just keep plugging on.  Even the bad days have their good points; a little smile here, a little development there.  The laundry will always be there, the dishes will always need doing and the floor will always need to be swept. Our time together is flowing past at an alarming rate... You'll forgive me then, if I choose instead to gaze into two little sets of eyes; one blue and one brown, and listen to two little sweet voices babble and coo.  Eyes, ears, mouth and nose.

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 Part of the "Define Normal" Blog Hop at:  http://www.justbringthechocolate.com/define-normal/

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 worrisome 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.

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 (presumably 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.

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.

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

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...

Checking In

[Note:  This is one of the series of letters that I posted to my friends and family on Facebook between January and May of 2011.  They are rough, raw, painful in spots and are completely representative of the level of understanding I had about Down syndrome at the time (read: precious little).  Despite ump-teen years of nursing, I had very little understanding of what Intellectual Disabilities were and how deep my own ignorance ran. 

This one in particular is our "NICU story", full of preemie babies, twins, post-C section stuff, firm diagnoses, post partum blues and overall NICU stuff. -Jxox]    

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 exhausted 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 was only there when going from a stand to a sit. 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--and when that was full, started on the freezer.  Usually I arrived during rounds and could eavesdrop a bit on report and start the day.

The babies 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 tired 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. Rest came when I got 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, 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 my area; 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 that and accept it. Sounds very clinical now, doesn't it? It was, simply because the little psych nurse never left my shoulder,  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 mourned the perceived 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 pain--both physical and mental--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 dietitian 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 a newborn with 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 ledger 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.