Surgical Suite: Allegro con brio*

Somewhere, off in the distance, a baby was crying.  I woke up with a start to find myself in my hotel room with Sean snoring beside me.  The city hummed steadily outside.  I tiptoed into the bathroom and quietly called the Critical Care Unit to inquire on Wyatt's condition.  He was having a restless night it seems, but did eventually settle with some top up medication.  I was glad of this and sought my bed for a few more hours.

Despite having the ability to sleep in, we were still awake at 0630.  We had ordered our breakfast for 0800, so with some time to kill, we took our time getting ready, checked our email and checked in with the rest of the world.  Another call to Wyatt's nurse let us know that he had a couple more brief periods of restlessness, during which he had kinked his art-line and catheter.  As a result, they had both been taken out.  They had also sat him up in a chair to make him more comfortable and he was currently having a period of very restful sleep.  Knowing that he was in good hands, we ate a leisurely breakfast and made our way to the hospital afterwards.

When we arrived, he was sitting up in what looked like a car seat, playing with Scout.  Once he realized that it was Sean and I on either side of the bed, Scout was history as both hands shot out to seek ours.  His eyes did well up momentarily with a wave of pain, but it was pretty evident that he had missed us.  A few careful kisses and touches later, he was much more settled.

He was on several IVs through which he received medication and fluids, but he was very happy to get 60 ml of 1/2 apple juice, 1/2 water.  He looked like he would take more if given it, but with the IVs they did not want him to get overloaded.  As it was he looked a little puffy and they had started him on Lasix to try and clear some of the excess fluid.  He was still receiving Tylenol every four hours,  Keterolac every six hours intravenously and morphine IV every four hours for breakthrough pain.  With all this on board, he would nod off at random intervals, so we would use this time to take breaks.

When we came back from lunch, Wyatt's nurse was changing the dressing on his central line.  That completed, he asked if we wanted to hold Wyatt.  I'm not even sure the YES! was out of my mouth before I was trying to scoop him into my arms.  Because of his surgery, I could not pick him up under his arms, but rather had to lift him as one would do with an infant, with a hand behind the head and one under his bum.   There was a comfy chair there and I sat back to try and sing my son's crying away.

It didn't exactly go as planned.

Wyatt is very used to assuming his own positions for comfort and sleeping.  He tried to crawl up on my shoulder, rubbing his incision and causing several of his sore spots to get poked.  I was very nervous about his central line and his pacing wires as he thrashed around a bit and I was trying not to hurt him as I repositioned him to sit on my knee.  A hopeless tangle who would not settle, we put him back in his chair a few minutes later.  Defeated, I helped sort out his tubes, put some "blow by" oxygen near his face and sang to him there.  He quieted and eventually went to sleep again. 

Chillin' like a villain on cardiology...
and trying to watch TV around Mom

There was talk mid-afternoon about Wyatt moving to cardiology.  However, things were very busy on the unit at the moment and there weren't any beds.  Sean took his leave and went home to collect our other two kids with the proviso that I would text/call if there were any changes.  I was surprised an hour or so later to learn that Wyatt was in fact moving upstairs to a room.  We packed up all his things and moved upstairs to a quad room that is usually used for "step down", but was currently slated as "overflow".  We were the only ones in the room for the first while, so it was nice to get him settled in his new chair.  He also has a TV, which immediately got tuned to Treehouse and settled him down immensely.  So much so, he had another nap.

This nap was a doozy.  We had just gotten the official OK for solid food, his tray had arrived and he had promptly fallen asleep again.  I waited and half dozed at his bedside myself, as I waited for him to wake up. I would startle with every call bell, code and phone ringing, but he managed to sleep through it all.

Shift change came and went.  His nurse was a blur in and out of the room as she was handed an admission right at shift change (which is probably one of the nastiest things you can do to a nurse). Wyatt slumbered on.  At one point, I started flicking his feet to try and wake him up.  He was OUT.  Somewhere around 7:00 I called home and got the kids to say "WAKE UP WYATT!", which turned out to be quite effective.  He woke up, looked around and took a little juice.  He was able to eat a tiny yoghurt as well, but you could see that this act tired him out.  He played with Scout for a while longer and the nurse came back around 9:30 to check in with us.  We sorted out his bedtime routine, I gave her tips for how he likes to go to sleep, helped her with meds and whatever treatments and assessments needed to be done and his eyes were closing once more when I left just shy of 10 p.m.

Once back at the hotel I made a few calls and Skyped a friend of mine.  I was nearly falling off the computer chair at 11 when I hung up and finally went to bed.  I'm not sure if I remember my head hitting the pillow or not, but I remember the next morning seeming like it occurred a blink afterwards.

One of my girlfriends (who was a CCU nurse for years) told me once that after cardiac surgery, the transformation was incredible.  In her eyes, you have a patient, who for all intensive purposes, is dead on the OR table.  They are brought back to life and within hours are eating, drinking; a few days later they are generally themselves again.  I was not expecting such a journey to take place within 24 hours,  but, here he was.  My baby was still very sore, still on loads of pain medication, still covered in lines and tubes and drains and things, yet trying to wave his silly mother out of the way so that he could watch his shows.  It was incredible to see.  His tenacity, his spirit continues to astound me.  He is fierce.  The pace at which he had accomplished so much was almost dizzying when you think about it. I was hoping this tempo would be maintained, because if it did, we would be home before we knew it.


------
*Allegro con brio is a musical term meaning "quickly, with spirit".

The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda

Golden Years

"Don't let me hear you say life's taking you nowhere, angel
Come get up my baby
Look at that sky, life's begun
Nights are warm and the days are young
Come get up my baby..."

-- David Bowie, Golden Years

I know I run the risk of sounding like a broken record as I keep repeating the following, but the passage of time completely confounds me some most days.  We've recently passed the babies 17th month "birthday" and the whole concept has me completely arse-over-teakettle.  It can't possibly be almost a year and a half since I beheld their fragility (literally) in the palm of my hand.  But here they are, my twin toddlers.  As time flows ever forward, they continue to make a splash, both in the pool and wherever they go.

My confusion is only compounded by the hours I keep, I am sure.  Although I know I work two 12 hour days followed by two 12 hour nights, for some reason, I think of that block of time as only two days.  I can keep track of the date, of the days of the week that I work, but in my head and as far as my body is concerned it is only two.  Possibly due to the pattern of "2 and 2", who knows?  In any event, what I think of as 'two days' is actually four days that I am out of commission as far as my family is concerned (five, if you count that the last day is dopey-stunned-sleepy day).  It is no wonder that it seems that the kids' heights have shot up overnight or that I am frequently taken aback by some new feat that I am assured by their father that has been occurring for some time now.

It's still surprising somehow that in my slightly out-of-time bubble, each day seems to bring new developments and skills.  Wyatt can now get just about anywhere he wants with a combination of commando crawling, pivoting, rolling and inch worming.  With the help of his worker from ICDSP we are trying to get him to crawl on all fours. He can put himself on his knees as I often find him actually sleeping in a knee-chest position and once put in this position he is quite comfortable to stay that way for some time.  It's just a matter of him doing routinely and finally making the connection that knees make for faster movement.  When that happens, you can bet that he will not stop.  You can almost watch the muscles in his legs developing;  what were skinny chicken legs a scant few months ago are now fleshed out and now match his little dimpled Popeye arms.

You can see how far he's come in the short videos that I shot of them in the pool the other day.  When I first plunked him in the chest high water (that was way deeper than any bath that he has ever had previously) he had difficulty with buoyancy.  First his one leg floated up, then his other and at one point I had to grab him to keep him from tipping over into the water and going under.  Within a few minutes he was holding on to the side for support and a few minutes after that he was confidently sitting in the water by himself, splashing away.  He had to correct himself a few times, but managed to keep himself from a dunking.  Both babies were having so much fun that I had to almost forcibly remove them as they were shivering, despite a Humidex of over 40 degrees Celsius. 

There have been changes in their diet as well.  Both babies seem to be weaning themselves off breastfeeding, although very sl-ooooo-wly.  The last two months have seen it reduced from every meal to morning-noon-night, to morning and night and now to just morning.  I guess I'm still the best part of waking up.  I thought we were completely done two days ago, but by yesterday morning, they were ready to go. It's been a bit of an emotional experience for me, fueled, I'm sure, by my fluctuating hormones.  Don't get me wrong... I don't really enjoy the whole thing.  Although it is a special bonding time with me and the babies (and is important as it is my time), I wouldn't call it pleasurable at this point.  Both have teeth and Wyatt right now is using his (with worrying skills that would be the envy of most puppies) at every oppourtunity.  Zoe learned quite quickly that nibbles meant a flick in the nose but her brother learns differently.  I don't use the same technique on him as the first time I did it, he completely lost it and wouldn't stop crying for what seemed like hours.  I've changed my tactics, but it seems now that he's almost afraid to nurse as I will look sternly at him and whisper (often through gritted teeth) "No biting!"  I guess morning hunger overrides the need to chew, but that bittersweet countdown has started.  It will mean more freedom for me, to be sure.  It also means the very end of my childbearing and "baby years" and I am going to allow myself the luxury of grieving that.  There will still be toilet training and drinking from cups and all sorts of exciting things in the wind but that sweet baby newness is gone.  Babies are both tiny and vast at the same time;  although they are small and vulnerable, they also seem to have a connection to the cycle of life and the universe.  Breastfeeding to me has always represented a link to that, a tether to the Infinite.  This part of motherhood is closing to me now, to the sound of happy dancing feet and toddler laughter.  As I walk into this new chapter with my children in hand, I cannot help but wistfully look back.  There is no turning around as I am getting old, but I can't help one last glance. 

Somewhere in my melancholy I realized that we are also approaching a new round of appointments.  Included in this is one with the cardiologist in August.  Hopefully we can get a definitive answer to what is going on with Wyatt's heart and what we will be doing about it, if anything, in the near future.  I'm hoping one way or another to end our period of "watchful waiting" as my friend Renata calls it over at Just Bring the Chocolate.   Many mothers of children with health and developmental issues will recognize this state, the constant evaluation of this one aspect or this particular miniscule behaviour or symptom or thing... and what the possible ramifications could be.  Watchful waiting... I like that.  Since Wyatt's birth I have, both consciously and subconsciously been waiting for the other shoe to drop, as it were. In this case, the shoe is a hob nailed boot that lands squarely in my chest.  Is he tired as he did not nap long or is he tired as he is not getting the oxygen he needs?  Is that cough because he has just gotten a noseful of dust from poking around at the edge of the couch or is he going into CHF?  The other day, to my horror, I discovered that his lips and tongue were blue.  I could feel my panic rising as I laid him on his back and started a head to toe on him, only to discover that a) his lips and tongue were not blue, but dark green and b) he had eaten a small discarded piece of paper from one of his big brothers numerous craft adventures.  Indeed, I found the offending wad still lodged in his palate and his grin faded as I swabbed it out with my index finger.  He looked at me as if to say "whyfore you steal my gum, mom?", while the entire time I am trying not to have a stroke.  Crisis over, we go back to usual patterns of subconscious surveillance and assessment.  Watchful waiting.  Yes, exactly.  I may never be able to completely turn it off, as it burns mental RAM quietly in the background, but I dream of a day where I can turn its settings down several notches.

There have been a few new behaviors from Wyatt that seem sensory related.  Not too long ago I threw some frozen broccoli and cauliflower into the Baby Bullet to hopefully chop them up for lunch.  Normally I process cooked veggies, but my (incorrect) thinking that day was that they would be chopped into pieces if left frozen, instead of rendered to puree.  As I was discovering my error, I looked over at Wyatt who was frantically wailing with a terrified look on his face.  He listens to the blender all the time,  in fact both kids react to the blender the way most pets react to the electric can opener:  Yay!  Lunch!  This time I guess the sound was slightly different and more random-ly clatter-y and he lost his mind over it.  A similar experience happened the other day when he picked up a piece of scrambled egg that was a little too warm.  It wasn't hot, but it too sent him into hysterics.   Wyatt doesn't cry as a rule, unless he is hurt, so this is a brand new thing for him. 

Another new thing is the sleeping habits of both twins.  Zoe's is hilarious:  hand her her tookie (soother), her bunny, her blanket... and she simply flumps over and that is it.  Goodnight.  Unless she loses her tookie and then it's a very sad baby until she finds it and then once more, flump!  Goodnight.  Wyatt has proven a bit more difficult lately as he will not settle for love nor money.  Even if he falls asleep during his bedtime snack, he will wake up and play until at least 10:30 pm. He's back up again at 7:30, so you can see how this cuts into any alone time that Sean and I have any delusions wishful thinking about. 

Mr. Quinn is turning into a young man in front of our eyes.  He is an excellent big brother, always there to save Zoe from her folly (like climbing on the coffee table) or to de-tangle Wyatt from some offending toy/article of clothing/room hazard.  We try to set aside special time for him every day, just to make sure that he does not feel left out.  He and his Dad have Lego Batman 2 to go through together at the moment, so I have to look for my opportunities with him.  Recently, he helped my plant my garden;  my brother had picked up some pepper and tomato plants for me and Quinn helped me organize everything and put the plants in the ground.  Hugging him is like hugging a coat rack these days as his baby fat is a dim memory and he seems to be all angles.  He too surprises me daily, with his intellect and quick wit.  He also expresses insight and empathy in levels that I wish many adults could develop.

We watch, we wait and we marvel at new developments. This is what we do.  It's not always rosy and happy;  we all have our times of trouble.  Work.  Money.  Stuff.  It's just life. We can't stop the march of time, I wish we could.  What we can do is bend it a little, to be able to relish particular points in time.  We don't really have golden years, we have golden moments that shine as brightly as the dawn.  It is these moments that illuminate the darkest of hours and fortify us for future trials.  A little more muscle tone, a little more communication, a little more self correction and independence.  Watching Wyatt stop himself from falling forward in the pool is the culmination of months of work and a perfect example of what I speak.  It is over within a second, you will miss it if you are not looking.  He used his trunk muscles, his legs, his arms, his balance and reacted in an instant to something that could have been dangerous.  To him, it meant multiple systems working in tandem.  To me, it was a ray of light.  That one gleaming moment and others like it, mean more to me than all the actual gold in the world.

I have a good life.  We have a good life.  Not all of it glistens, but enough of it lights the more shadowy paths.

(Whop, whop, whop...)

In the News - April 2012

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of inclusion, of advocacy, of education, of hope and of love.  These are from the month of April.

Legend:

AUDIO	indicates an audio clip
BLOG	indicates a blog post
EVENT	indicates a scheduled event - NEW!
LINKS	indicates links or resource materials
PHOTOS	indicates photos
STUDY	indicates a study
THREAD	indicates an online discussion thread - NEW!
VIDEO	indicates a video

	Understanding and Treating the Cognitive Dysfunction of Down Syndrome
	Sensory Integration for Children with Autism:  Proprioception System Explained
	Outrage as sister with Down syndrome barred from Canada
	Employers welcoming people with Down Syndrome with open arms
	Why So Many Babies are Still Being Born With Down Syndrome
	Mother's Down Syndrome Memoir on Sale Today
	Popcorn Success Story highlights disability summit
BLOG	Look at me while I misunderstand you: an Aspie/NT morning
	'Roo's a lucky boy then?  Baby Kangaroo forms amazing friendship with Down's Syndrome Teen
	My Baby with Down Syndrome:  Finding Beauty in the Unexpected
	Scientists find First Definitive Genetic Links to Autism
BLOG	Good Article in Defense of Extended Breastfeeding
	Teenager with Down's Syndrome targeted by "Internet Trolls"
BLOG	Anti-Bullying Reading Recommendations for Children and Teens
EVENT	Down Wit Dat's T-21 Blog Hop
BLOG	Mosaic Down Syndrome -  Still Learning
THREAD	I am the Mother of fraternal twins, one who has Down Syndrome.
BLOG	Just the Facts
BLOG	21+21+21 =?
	Pageant celebrates spirit of girls with disabilities
	How to Teach the 5 Senses to Kids
	Special Dreams Farm offers life skills to special-needs adults
EVENT	Speaker at Holland Bloorview May 10th
	Kindergarten classmates find Gretchen Coon is a lot like themselves
EVENT	To "I Wish I Didn't Have Aspergers": An #AutismPositivity2012 Flash Blog Event
BLOG	10 Things You should Know About Your First Week of Breastfeeding
BLOG	Things You Should Know about a Heart Mom
	Defying the Odds
	Facebook Blocks Account over Special Olympics Photos
	Down Syndrome Prom King Wins by Landslide
BLOG	"I don't care what I have as long as it's healthy"
	Even if it takes awhile, love finds a way
	A Theater Class where All are Able
	How to Teach Kids About Matching Numbers
BLOG	Sibling Love
VIDEO	The Frog Princes

Down Wit Dat hosted the second T-21 Blog Hop on April 21.  Don't miss our next one on May 21!


...And that's the news.  Keep the stories and information coming!

Defending the Boob

I'll start off right now by saying this post isn't for everyone.  It has boobs in it. 

Lactating ones.

I realize that half of you stopped reading after the last line, but to be fair, I've probably gained a few weird fetish dudes by now so I'm sure it all balances out somehow. 

In any event:  My name is Jen and I am an extended breastfeeding Mom.

As their biological mother, I chose to breastfeed all three of my kids.   I did this as I believe this is the best start that I can give them. I am not here to make you feel bad if you didn't;  we are fortunate enough to live in an area of the world that allows us options.   However, it's my blog and right now we are all about the boobies. 

It's sad in this day and age that you have to defend your choices as a mother, no matter what direction you take.   I am very lucky to have been able to breastfeed my twins up until now.  I struggled with my eldest for 6 months before giving up and switching him to formula. I wish I had known then what I know now (and had gotten a decent pump!)  The babies are now almost 14 months old and we are still going strong.   When Wyatt was born, I was open to any an all options for him in particular;  if it turned out that he needed to be tube or bottle fed pumped milk, then I would have done that.  We were very pleased when he was able to breast feed; not only would it provide the best dietary option and boost his immunity, but the increased resistance would give his oral-facial muscles a better start. 

As part of the 31 for 21 Blogging Challenge that I participated in last October, I put out this Factoid Friday:  7 Good Reasons to Breastfeed Your Baby with Down syndrome.  Babies with Down syndrome commonly have feeding problems;  I came across a study from Italy where 57% of babies with DS born in the four university hospitals were bottle fed (Pisacane, etc, 2003)  Depression and frustration were two of the most common cited reasons.  Feeding difficulties was the most common.  Only 30% of the children admitted to the NICU were breastfed.  I've run into similar studies from South America.  My advice to any new DS parent facing their options would be to do the research.  If you can do it, do it for the 7 Reasons that I've listed.

Now that the babies are 13+ months, I've now moved into very uncharted waters.  I'm now part of a new category:  the extended breastfeeder.  I have had (mostly well meaning) folks ask me "how long are you going to keep that up?" and the like.  (Also, "why are you still feeding both of them?", like I can pick one of them?) The stereotype, of course, is the "crunchy" mom who breastfeeds until the kid is in middle school... and yes, I have been asked that as well. Both Wyatt and Zoe are eating a variety of solid foods.  When I am at home, they continue to receive breast milk (they are supplemented with homogenized milk when I am working and there is not enough pumped milk in the fridge).  Why am I still doing this?

Really, it's more like: why the hell wouldn't I be?

There is no medical explanation as why I should cease breastfeeding my twins;  those 7 reasons still apply.  Between my insane work schedule and, well, life, any close, quiet snuggle time I get with the babies is important.  So what is the issue then, other than a vague societal idea that it is somehow weird and unnecessary?

To be honest, I did think about quitting.  It would be easier in some respects.  Pumping at work can be a drag, when all I want to do on my break is close my eyes for a few minutes or possibly eat something at a comfortable pace.  I might also want a glass of wine or two (or three) some evening at home. Then there is Zoe, who now has a mouthful of teeth.  Sharp, needle-like teeth.  I probably don't need to expound on that one. 

Ultimately, for me, it comes down to Wyatt.  Yes, he is eating solids, well above what is "expected" of a child with Down syndrome at his age.  However, is solid food and cow's milk the best I can do for him and his special needs?

It is true that after 6 months, with any baby, supplementary feeding is recommended.  However, that does not mean that breast milk ceases to be of any nutritional value.  In fact, once you are over the year point, it is the exact opposite.  In 2005, Mandel determined that milk from mothers who had been breastfeeding for over a year showed "significantly increased fat and energy contents, compared with milk expressed by women who have been lactating for shorter periods."  To further expound on this, Dewey (2001) found that "Breast milk continues to provide substantial amounts of key nutrients well beyond the first year of life, especially protein, fat, and most vitamins."  In fact, when analyzed, 448 ml of breast milk (in ages 12-23 months) provides (of the daily requirement):

• 29% of energy
• 43% of protein
• 36% of calcium
• 75% of vitamin A
• 76% of folate
• 94% of vitamin B12
• 60% of vitamin C

After the first year then, breast milk continues to be a valid form of nutrition for a toddler.  What else can it do?  Building on our previous 7 reasons:


"1)  Breastfeeding provides antibodies and protection from illness"

After the first year, breast milk continues to provide immunity and fight infection.  In fact, it has been shown that breast fed toddlers have less infections and a reduced severity of illness (Gulick, 1986). Also, breast milk has an increased amount of antibodies in the second year (Goldman, Goldblum, Garza, 1983) which increases even further at the time of weaning (Goldman, 1983).  It would seem that extended breastfeeding is a beneficial practice for the health of any child, especially one who is statistically prone to infection and illness due to his genetic make up.

"2)  Breastfeeding improves mouth and tongue co-ordination which will aid in speech and language development"
  
Breastfeeding provides a variety of "positive effects on the development of an infant's oral cavity, including improved shaping of the hard palate resulting in proper alignment of teeth and fewer problems with malocclusions." (Palmer, 1983). In terms of both motor skills and early language development, another study found "The proportion of infants who mastered the specific milestones increased consistently with increasing duration of breastfeeding." (Vestergaard, etc,1999).  Therefore, extended breastfeeding would only continue to enhance speech and language development.

"3)  Breastfeeding promotes increased brain growth due to DHA, a fatty acid that is not found in most formulas or cow's milk." 

Extensive research in this area has shown that there is a direct relationship between breastfeeding and cognitive ability.  Of particular note is a study from 2002, whereby "a significant positive association between duration of breastfeeding and intelligence was observed in 2 independent samples of young adults, assessed with 2 different intelligence tests." (Mortenson, etc, 2002).  Extended breastfeeding then, would further aid any child's cognitive development;  ostensibly providing a boost to one who was developmentally delayed.

"4)  Breastfeeding provides the opportunity for extra sensory stimulation as there is more skin to skin contact"

Many studies have shown that breastfeeding enhances motor skills and overall development.  In fact, "The psychomotor and social development of breast-fed babies clearly differs from that of bottle-fed ones and leads at the age of 12 months to significant developmental advantages of the psychomotor and social capabilities." (Baumgartner, 1984).  As the senses develop the more they are stimulated, it would be easy to infer that the more one is breastfed, the more developed the senses would become.  It is obvious how this would be helpful to a child with Down syndrome.

"5)  Breastfeeding fosters closeness"
and
 "6)  Breastfeeding enhances mothering skills"

I think this quote says it best;

"A major reason for practicing sustained breastfeeding in industrialized countries in the face of social disapproval has been the belief that it provides a closer bond between mother and child. These children are often said to be more secure and more independent. They continue to remember this close bond and their mothers believe that it continues in some sense, even into adolescence, easing the difficulties in the mother-child relationship during this period." (Grenier, 1995)  

The strong bonds created with breastfeeding appear to last well into childhood, at least by our perceptions.  Ferguson found "significant associations between the duration of breastfeeding and maternal and teacher ratings of conduct disorder obtained at six, seven and eight years" (Ferguson, et al, 1987). 
 
"7)  Breastfeeding reduces the risk of Type 2 diabetes"

Breastfeeding your child reduces his or her chances of developing Type 2 diabetes.  What is not commonly known is that extended breastfeeding decreases the mother's chance of developing Type 2 DM as well.  According to the Journal of the American Medical Association:  "increased duration of breastfeeding was associated with reduced risk of type 2 diabetes".  In fact, for each year of lactation, a woman decreases her chances by 15%.  (Stuebe, etc, 2005).  With that in mind, if a woman has two children and breastfeeds them both for two years, she has reduced her chances of developing Type 2 diabetes by 60%.  Other diabetes related finds of note:  suppressed lactation actually increases the chances of diabetes. Also: "lactation was associated with improved glucose tolerance, fasting glucose, and total area under the glucose tolerance curve. In an analysis stratified by use of insulin during pregnancy, fasting glucose levels were significantly lower in the lactating group." (Stuebe, etc, 2005)

As it turns out there is also some evidence that extended breastfeeding reduces the mother's risk of certain cancers, rheumatoid arthritis, and osteoporosis.


Contrary to popular belief then, extended breastfeeding (past the first year) has valid benefits for both mother and baby. I must admit, although it can be tricky (mainly due to other people), it provides a quiet time that I can spend with both my babies at once.  They make eye contact with me, they make eye contact with each other.  Occasionally, one will poke at the other, but that is the story with any siblings.  It's also easy and free, which scores bonus points as well.  I won't know for sure if it will make the difference between Wyatt taking this course or another in high school.  I will know that when I do get a chance to cool it for a bit, I can rest easy knowing that I did my very best for him and his sister.  Which is all any of us aspire to do, really.

Long live the boobies.  To my twins at least, they're like no udder. 



---------------------------------
Baumgartner, C. Psychomotor and social development of breastfed and bottle-fed babies during their first year of life. Acta Paediatrica Hungarica 1984; 25(4):409-17. 

Dewey KG. Nutrition, Growth, and Complementary Feeding of the Breastfed Infant. Pediatric Clinics of North American. February 2001;48(1).

Ferguson, D. M. et al. Breastfeeding and subsequent social adjustment in six- to eight-year-old children. J Child Psychology and Psychiatry 1987; 28:378-86.

Gulick EE. The effects of breastfeeding on toddler health. Pediatr Nurs. 1986 Jan-Feb;12(1):51-4.

Goldman AS et al. Immunologic components in human milk during weaning. Acta Paediatr Scand. 1983 Jan;72(1):133-4.

Goldman AS, Goldblum RM, Garza C. Immunologic components in human milk during the second year of lactation. Acta Paediatr Scand. 1983 May;72(3):461-2.


Mandel D, Lubetzky R, Dollberg S, Barak S, Mimouni FB. Fat and Energy Contents of Expressed Human Breast Milk in Prolonged Lactation. Pediatrics. 2005 Sept; 116(3):e432-e435.

Mortensen EL, Michaelsen KF, Sanders SA, Reinisch JM. The Association Between Duration of Breastfeeding and Adult Intelligence. JAMA. 2002;287:2365-2371.

Nursing Beyond One Year by Sally Kneidel, NEW BEGINNINGS, Vol. 6 No. 4, July-August 1990, pp. 99-103.

Palmer, B. The Influence of Breastfeeding on the Development of the Oral Cavity: A Commentary. Journal of Human Lactation. 1998;14(2):93-98

Pisacane A, Toscano E, Pirri I, Continisio P, Andria G, Zoli B, Strisciuglio P, Concolino D, Piccione M, Lo Giudice C, Vicari S.  Down syndrome and breastfeeding.  Acta Paediatr. 2003;Dec;92(12):1479-81.

Stuebe A., Rich-Edwards J., Willett W,  Manson J, Michels M, Duration of Lactation and Incidence of Type 2 Diabetes.  JAMA 2005;294(20):2601-2610.

Sustained breastfeeding, complementation, and care by Ted Greiner, Food and Nutrition Bulletin, 16(4):313-319, 1995

Vestergaard M, Obel C, Henriksen TB, Sorensen HT, Skajaa E, Ostergaard J. Duration of breastfeeding and developmental milestones during the latter half of infancy. Acta Paediatr. 1999 Dec;88(12):1327-32.

Factoid Friday: 7 Good Reasons to Breastfeed Your Baby With Down Syndrome

It may be difficult to breastfeed your child with Down Syndrome in the beginning.  I had to train Wyatt to latch properly and then how to eat without either choking or exhausting himself.   I was asked many times by (mainly) well meaning friends why I would bother.  I would mumble in my sleep deprived haze about antibodies and future weight issues.  Today's Factoids, now that I am a little more coherent, are good reasons why you should breastfeed your baby with DS.

1)  Breastfeeding provides antibodies and protection from illness.  Children with Down Syndrome are susceptible to bowel and respiratory issues.  Breast milk provides antibodies to fight infection and is easier to digest than formula.

2)  Breastfeeding improves mouth and tongue co-ordination which will aid in speech and language development.

3)  Breastfeeding promotes increased brain growth due to DHA, a fatty acid that is not found in most formulas or cow's milk.  Breastfed children score higher on IQ tests than those raised on formula;  this brain stimulation is particularly important in learning disabilities such as Down Syndrome

4)  Breastfeeding provides the opportunity for extra sensory stimulation as there is more skin to skin contact.

5)  Breastfeeding fosters closeness.  It offers more time to cuddle and spend time and get to know a special needs baby better.  It also boosts the mother's self esteem by providing a way that she can do something meaningful for her child and their health.

6)  Breastfeeding enhances mothering skills.  The patience, encouragement, coaxing and teaching used to help the baby learn to breastfeed will be employed over their lifespan to help them reach their goals.

(Becky Flora, BSed, IBCLC, 2001)

Finally, Number 7 is on me...

7)  Breastfeeding reduces the risk of Type 2 diabetes.  People with Down Syndrome are prone to Type 2 Diabetes for many reasons, including increased insulin resistance, reduced lean muscle mass, increased weight and fat storage. 

And, that's the facts, Jack.  Happy Friday.

"...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/

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.