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 (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.

The Upside of Down

It is only Thursday and I am pooped.  It has been a very busy week so far (and will continue to be so), but we have had a few nagging questions addressed. I am happy to report that these answers have brought a lot of relief and comfort.

As I mentioned previously,  Our worker from Infant and Child Development Services came Monday morning.  Their workers come from a variety of backgrounds including ECE, Psychology, OT, Nursing... ours comes from an ECE and Developmental Psychology background, which suited me fine. She came in, introduced herself... and spent over two hours chatting with me and playing with the babies on the floor.  It was great.  Quinn was in fine form as well;  when he heard that she had arrived, he hurried to get dressed.  Unfortunately, he missed the pile of clothes that I had left on his bed for him (shorts and a t shirt as it was going to be a very hot day).  Instead, he came down in brown track pants and a light coloured pullover with a collar on backwards.  He came right up to us on the floor and sweetly announced "Hi, I'm Quinn" while wearing what looked like a straitjacket. That's m'boy.  She didn't bat an eye... I guess she was too busy gazing into his.  I sent my little lunatic upstairs to change and we got on with the assessment which was only occasionally punctuated by an off the wall [to us] but perfectly pertinent [to him] statement or question.

The whole conversation, like my brain, was very tangential and informal. It totally centered around what the kids were doing.  Both babies were awake and alert and ready to show their stuff.

Listen... they're talking about us again...

Wyatt's head is getting a little more steady every day, which is very encouraging.  "A."  was happy that Zoe could push herself up on her forearms and showed me a little trick to help them master it.  Overall she was very pleased with Wyatt's development;  she remarked on a few things, including his vocalizations, his mouth shapes during these vocalizations and his ability to track by sound and sight.  He also reaches well for things.  A. continued by listing off a few things that I can do to help both of them improve and I was very happy to hear they were things that I was already doing.  Little things such as ankle/wrist rattles, using the dangling toys on the Gymini-jillikers (Gymini play mat), the simple toys I was using, talking to them, imitating their sounds, changing their environment, introducing texture, playing music for them, singing and so on.  We talked about their delivery, Wyatt's diagnosis, their stay in the NICU and how we managed that... even Zoe's surgery.  She was amazed that a) I managed to make it to Mother Goose at all and b) how I was "handling" everything.  Sometimes you have to have things pointed out to you and I am no exception.  I guess our story is a little incredible if you think about it.  A. made a point of relaying how well she thought Team Logan worked together and how well we have dealt with our roller coaster lives over the last two years or so.  I told her that all you can do is laugh sometimes, and cited the dishwasher (which died a horrible leaky death the night before).  What are you going to do?  That's life.

Many of our questions were finally answered.  Infant and Child Development Services sets you up with whatever extended services you might need, such as OT, speech therapists, etc.  Usually, speech therapy and the like start after 1 year of age.  The idea being that you assess where the child is with their speech, etc at that time and then intervene appropriately.  We talked about Wyatt's physical health and swimming was discussed.  I was surprised that they don't recommend exersaucers and jolly-jumpers and the like, but she went on to say that many parents leave their children in them for hours at a time where they are standing on their toes and that interferes with proper leg and foot development.  She did add that 10 or 15 mins here and there would be fine and would be helpful, but no more.  A. went on to say that the best place for them would be just as I had them, on the floor, where they could grow and stretch and build their muscles in a more natural way. 

ICDSP also has a ton of resources for us to utilize:  They have toy and book/video libraries, will and estate planning, evaluating eligibility for and setting up government funding, groups and programs tailored for your needs... and the list goes on.  They will also be involved before Wyatt starts school;  the spring before he starts JK, we (A, the OT, any other development specialists, the teacher, the principal and Sean and myself) will all meet and discuss exactly what his needs are and whether or not he will need additional support in the classroom.  I guess at the time we will also discuss whether our school separates twins or not, but that is another issue.  Even though I knew that he would be going to regular classes like a regular kid, for some reason hearing it from this woman made me relax a little.  I don't know why... perhaps, once again, a small amount of validation can go a long way.  She will be visiting us monthly for the first while to assess his continuing development, which I was also pleased to hear.  I found the whole experience to be extremely positive;  Wyatt's doing well, we are doing well and we are doing the right things for him.  I don't think it gets better than that.

That night we took them to our GP for their 4 month shots.  I'm not so sure of their scale to be honest, but according to it, Zoe weighs 12 lbs, 6 oz and Wyatt weighs 12 lbs.  Zoe has officially beaten her brother in the weight department (you can chalk that up to the muscle tone).  Our Family Doctor was pleased overall with their progress and gave them a shot in each thigh.  I had Sean hold them down... I couldn't bear to do that again.  They were reasonable that night, but were feverish yesterday...  light to no clothes and Tylenol seems to have taken care of that for us.

Tuesday we had a trip to the cardiologist and once again, the kids were on.  I really do like going there as everyone is so friendly and very helpful.  We didn't have to sedate Wyatt (which is always a relief) and it was such a pleasure to watch the babies interact with the staff.  There were a few awkward spots especially when Zoe started crying right when we were doing an echo on Wyatt, but one of the staff just walked over and got her to smile as if this happened every day.  Wyatt had his checkup and his echo and the Dr. is so pleased with his progress that we do not have to see him for another 6 months.  Fantastic! 

We had a happy little moment on the way out as well.  Quinn was playing with a new friend in the waiting room and when we were leaving, I was delighted to see that the (younger) boy he was playing with so easily had DS.  I introduced myself to the boy and his mother and talked to Quinn that his new friend had the same condition that Wyatt has.  "But, they don't look the same" was his reply, to which I responded that "G" looked like his family while Wyatt looks like ours.  I don't even think Quinn noticed that his new playmate was non-verbal... they totally "got" each other.  "G"'s mom was very pleased with the interaction and I was too...  as it was just a little heartwarming glimpse into the future.

It is always good to hear good things about your kids, it's even better to be given the reassurance that they are doing well and most importantly that you are doing the right things for them.  Although I think we are pretty good parents and we strive to be the best that we can for our kids, it is good to have that little extra bit of validation.  Armed with that, we can continue on knowing that Wyatt (and all our kids) will be the best that they can be.  We may not be able to predict Wyatt's journey, but his path will take him places... of that I am sure.

Wyatt intently listening to big brother Quinn

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You've Come a Long Way, Babies!

A lot can happen in four months.

Well, five really...  It's been five months since Wyatt's diagnosis. They were born four months ago yesterday.

Wow.

In that time, they've gone from tiny 5 lb bird-like creatures to big chubby babies that are (I think...) about 12 lbs now. 

Newborn Wyatt... so tiny.

Wyatt now. "What?  I wasn't gonna lick this..."

Newborn Zoe and a loonie...

Zoe now... a lot bigger and a lot goofier.

Both are developing nicely but we are starting to see the gulf widen between them a bit.  Zoe can hold her head up almost still now, while Wyatt has a way to go with that.  He can hold his head up, but it's a bit wobbly and he'll end up crashing into you with his giant noggin.  His babbling is more complex and multi syllabic while Zoe sticks to the classics:  the baby gurgle, the Gah! and her specialty, the blood curdling scream. She can smile and give a tiny giggle (a little "hee hee" that is adorable) yet he is just starting to learn how to smile.  When he does, he looks like an anime character as he uses his whole face.

You can rub my tummy for luck.

Unlike Quinn, who was pretty much textbook +1 (ie: exactly one month ahead) developmentally, these guys are all over the map (which is totally normal for premature twins born 6 weeks early).  I'm supposed to subtract 6 weeks from their age ("6 weeks adjusted") which would make them 2½ months old.  I've mentioned the head holding and the babbling; this generally occurs at the end of the second month (which would put them about right where they should be). They've both discovered their hands which usually happens (so they say) in the third month too.  So, as you can see, they are right where they should be for typical term singletons with some things and right where they should be for premature twins in other areas.  Confused yet?  Yeah, join the club.  I'm not worried about them at all as Zoe is as bright as a button and Wyatt is pretty bright too.  He'll do things in his own time, which as it stands now is keeping pretty much at par with his sister.

 

 How'd they get so big?

Our family is growing and changing as well.  Quinn is adjusting to his role as big brother although he has to be reminded constantly to be careful around them. He is a big help most days and we just have to be careful to make sure that his needs are met just as much as the babies are.  There are a lot of conversations spoken through gritted teeth around here;  usually he is waving something magnificent that he has just made for me in my face as I am trying to clean up the worst poop ever.  There was a lot of yelling initially as I was just too tired to think anything through...  it really hit home one day when Quinn remarked to his Dad that he was dressing up to disguise himself as someone else so that I wouldn't yell at him.  Ow.  Guilt, double plus ungood.

Things are settling down now that I am getting more sleep on average.  They are now going 4-5 hours between feeds and can go 6 hours at night.  Two or three nights this week they have gone 7 or so hours which has been fantastic. 5 hours sleep in a row?  Inconceivable!  Quinn still has an outburst once in a while, but that has thankfully decreased as well.  I still look hungrily to Friday nights as the weekend means Hubby's help for [a very short] two days.

I remember being settled into a routine by the end of the second month with Quinn (which corresponded to two weeks after I felt better post C-section).  I stopped about a week or so ago and admitted to myself that I felt that way again.  I didn't have that same overall sense of panic that I had the first time around, I just felt very very busy and a tad overwhelmed at times.  I'm happy to say that has subsided a bit so that now I can enjoy my family more.  We're still going to Mother Goose and I'm sure that has continued to help as well. 

Four months... it seems a lifetime (and for two little people, it has been just that).  I've come to terms with my son's condition and embraced his differences (I had already accepted him, make no mistake).  We've all made our own adjustments along the way and will continue to do so.  I've even started networking with other DS parents and getting out there to share our story and learn from others.  I've found support in surprising places and accepted the lack of it in the more obvious spots.   A friend remarked the other day that she would bet that I didn't think that I had it in me and that she was impressed and proud of me, even though I wasn't her own daughter.  I'm willing to bet she doesn't know how much that really meant to me, or how much I needed to hear that.  I'm proud of us too.  Anyway you look at it, I feel blessed... and confident that we will overcome and embrace what the next four months brings us.

My three little monkeys.  Who'da thunk it? 

"...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 opthomologists.  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.

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 (http://en.wikipedia.org/wiki/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. (http://en.wikipedia.org/wiki/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.

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. ;)