Down Wit Dat: Birth Story

Showing posts with label Birth Story. Show all posts

Monday, January 14, 2013

Breathe

I played the fool today
I just dream of vanishing into the crowd
Longing for home again
Home, is a feeling I buried in you
I'm alright, I'm alright
It only hurts when I breathe
And I can't ask for things to be still again
No I can't ask if I could walk through the world in your eyes
Longing for home again
Home, is a feeling I buried in you
I'm alright, I'm alright
It only hurts when I breathe...

--Melissa Etheridge, Breathe

If you haven't figured out from the blog titles or the song lyrics interspersed throughout my writing, music plays a big role in my life. It is high on my list of coping mechanisms and the soundtrack to my life, contrary to my rocker exterior, is quite varied. As I've said before, music is magical; it can make your soul soar to the heavens and then hurl you to the depths of despair. It can create a mood, it expresses what the tongue or pen often cannot. If you're like me, you will often find yourself struggling to grasp a thought or feeling when along will come a piece that will make you say "Yes! Exactly!"

Melissa Etheridge did that for me once.

Two years ago yesterday, as I was wrestling with the news that my unborn son had an AVSD and a very high likelihood of a chromosomal disorder, I listened to a lot of music to try and remain calm. As hysterical as I wanted to be, I had to remain calm for all three of our sakes. I also had to let a whole bunch of people know that my naive little bubble had popped. All was not well with my pregnancy, all was not well with the health of my babies. So much so, that the pain of it all permeated everything. Every task I completed, every moment, both awake and asleep seemed saturated with this new development. As I struggled to maintain my composure, to pretend that it was all no big deal, it all had to come out somewhere. It hurt, seemingly, with every gasp that I took.

So, I published a "note" to Facebook for all my friends and family. The reach was a bit larger than I was comfortable with, but that was the price I had to pay for not seeking out those closest to me one by one. Entitled "It Only Hurts When I Breathe", stealing a lyric from Melissa's song that I had been listening to as I wrote, I brought everyone up to speed, fast. Two years later, as I reread those words and summon up those old demons, I'm struck at how far we have come.

Almost two years later, I have three reasonably healthy children (Boogie Wonderland/Expectorate Boogaloo aside). We are waiting for the pre-op appointment for Wyatt's heart at Sick Kids and there are some appointments in the next month, but other than that, it is business as usual.

In those long, sleepless nights before and after they were born, one of the things that I worried about (aside from the myriad of other things) was their "twin bond". As a culture, we like to mysticise this relationship, but the truth is that it exists and no chromosomal differences are going to interfere with it. My twins, despite their physical differences, still play together. They roll over each other like puppies and protest when one steals the others toys (it goes both ways, trust me). Wyatt has learned to hold his own and will shove and pull Zoe down when she annoys him. Here's a video I shot this morning of them fighting over the dinosaur. You'll see Wyatt hold his own and voice his protest a couple of times. You'll also see him tickle her foot and her to talk directly to him once or twice.

Wyatt and Zoe ~~Fighting~~ Playing with the Dinosaur
They are also very aware of the other; when one is upset and needing comfort, the other will most likely seek some too. Wyatt managed to pull a lamp down on himself the other day; I had two crying toddlers in my lap for the better part of half an hour afterwards. If Zoe wakes up first in the morning, you can hear her trying to wake her brother up. Once awake, the two will "talk" back and forth to each other. This used to be very rudimentary with babbling, but now that things are getting more sophisticated, there are some words thrown in here and there. I cannot describe how beautiful it really is. Watching them play together despite their differences is also a thing of beauty... a fleeting thing, but a thing nevertheless.

Playing nicely together. A moment later, chaos resumed

Overnight, Zoe has gone from "baby" to "little girl". A goofy little girl that is smart as a whip and makes me want to squish the stuffing out of her even when she is driving me insane. She toddler giggle-word salads her way through the day with the occasional crisp sentence where you least expect it.

Where have I seen this kid before?

Oh. Right.

Wyatt is still developing strong. He practices his kneeling whenever he can. We are also working on his standing, but it isn't independent enough for me to get a shot of it yet. He's popping out molars at an alarming rate and not surprisingly, is more exploratory with food. He's also shoving it in as he has gained a lot of weight since his last check up. Zoe has traditionally weighed at least a pound or more than him, once she caught up to him at the three month point. As of this afternoon, he weighs 5 more ounces than her.

Born: 4lbs 1 oz, now 25lbs 7 oz

Born 4lbs, 13 oz, now 25lbs 12 oz. Boom!

Somewhere, along the way, things stopped hurting so much. When you look at my babies now, it's really not that much of a stretch. Most of it seems silly in a way. I know that meeting him in person blew a lot of doubt and insecurity away, but the learning and experience I have gained since then are the reason that Wyatt's differences stopped being such a big deal. The people I have met, both virtually and in real life, have helped me along. Soon we will learn the details surrounding Wyatt's surgery and after that is over, I will finally exhale, deeply and with conviction.

Today, we are more than "all right". That pain is gone... and in it's place is a bustling, busy little family that I am blessed to be a part of. New pains will come. There is a big one in the wind. Until then however...

Breathe.

Monday, January 7, 2013

Comfort In the In-Between

Being the 7th of January, it's more than time that I write something for the new year, don'tcha think?

But what to write? I'm in the enviable position right now that there is nothing pressing on my brain pan, as eager to get out as a golden retriever pup into the first snowfall. Things are quiet again. Things are in-between again. I have a list of people that I have to call today, of appointments I have to make. I'm tempted to leave it until tomorrow, just to have one more day of in-between peace.

That's not to say that things aren't happening around here right now, because they are. Both babies are rapidly becoming babies no longer. Each new day brings new things, new masteries. There is a lot I can tell you about teeth and four point crawling and self feeding and new discoveries and talking and the task of switching them both over to a new size... and I will, rest assured. Just not right now. I want to stay in the in-between. Its relative quiet is soothing right now. After the hectic holidays and over two months of sickness and working through the New Year, you will permit me this little self indulgence.

There is still a lot to consider here in the in-between. It is a softer place than others, full of things like gratitude and remembrance and reflection. There is little "tasking" like there is in other places and a lot more awareness. Like this morning... Normally, Miss Zoe is a whirlwind of colour and noise by breakfast; unfortunately our little Zornado had a restless night and woke up several times. I'm not sure if it was bad dreams or what, but she resettled herself each time. Sean carried them both downstairs for breakfast sometime around 10 am this morning and standing Zoe on the kitchen floor, started about the job of buckling Wyatt into his chair. Zoe disappeared upstairs in a flurry of little bare feet and returned shortly afterwards with her blanketbunny and tookie (soother). Normally, they reside in her crib during the day; she happily flings them aside to get a running start on the day. Not today. Bunny had to sit near her at the table and once breakfast was finished, she curled up with us on the couch. Still in her jammies, her eyes wide and her fingers entwined in bunny's familliar softness, she rested, watched TV and had a quiet morning with us. Wyatt took up the assignment of tearing the living room apart on his own, but for a few hours we spent an almost magical sweet time with our little girl. She has since regained her energy and her almighty screech, but for a bit I got to snuggle with my girl without her restless squirming. I got to consider how long and beautiful (and how unlike mine) her eyelashes are. How very big she is, yet how small and delicate her features still are. How perfect each little one of her "toesh" are, even if she does have her Dad's Fred Flintstone feet. A camera was no where at hand to capture this time, so I only had my mind's eye to freeze this morning forever. It's certainly not as reliable, but I'm hoping in my twilight years that some of this will remain, when so little else will.

As we cuddled on the couch, Zoe occasionally sighing as I stroked her hair, Wyatt surprised me with his determination. In his crawling around the floor, he had arrived at a point where the coffee table blocked his view of the TV. He heard Super Grover come on and instead of attempting to crawl over to a better vantage point, pulled himself up to a high kneel on the coffee table and shoved all the toys out of the way to get a better view. I started laughing, almost dislodging Zoe who was curled up in my lap. His solution was elegant in it's simplicity and he smiled, his chubby elbows bracing himself on the table as Super Grover showed up for another awkward adventure. He has come so far in the last few months, despite the rounds and rounds of viruses and bacteria that have sapped his energy and impacted his ability to breathe. I am grateful to see the spark back in his eyes and the impishness back in his grin. I am grateful to see that his ears have become unblocked and other than the discomfort of growing teeth, is returned again to health.

My eldest had become a little house happy over the Christmas break. I think he was as relieved as we were to return to school this morning, to see his friends and return to a routine that involved more than meals and bedtime. He'll turn seven this spring... all angles and coltish, he amuses us every day with his "awesome dance moves" and "beautiful singing voice" (his words). He is kind and artistic and scientific and everything I would ever imagine I would want him to be. Even when he leaves gobs of toothpaste in the bottom of the sink or "art" all over the house.

Before Christmas, Sean and I found ourselves having a shared moment of thankfulness. We had gone out early to do some Christmas shopping and although we had fed all the kids and deposited Quinn at school, we had neglected to look after our own needs. We stopped at Tim's, grabbed a breakfast sandwich and some coffee and plunked ourselves down at one of the tables in the sectioned off area in the mall and began to wolf our breakfast. The twins were in the stroller and were given a Timbit or two to nibble on. I was finished my sandwich when I looked up and nodded to Sean "Look. Twins". A couple was wheeling up to the Timmies kiosk with a huge double stroller complete with baby buckets and lots of blankets... the tell tale signs of new-ish little ones. The Mom saw our stroller as they were wheeling up and called out to us "You have twins too?". We smiled back and the inevitable twin parent conversation ensued. While her SO waited in line, she leaned on the mini wall and we talked about our kids. She looked like any other twin parent in the first year: exhausted, unwashed, rumpled and in great need of adult conversation. I was briefly shocked when she asked me "were there any complications?", and nodded that yes, they had spent some time in the NICU. I held back Wy's heart issues and DS as I didn't want to scare this new-ish, still exhausted Momma; although there is really nothing scary to me (and you), being in the know, it's a bit unsettling to some people, especially complete strangers.

As it turns out, this Momma needed this conversation much more than I had thought.

Her twins, a boy and a girl, were nine months old at the time of this meeting. Although they were born at the same hospital as mine, her son was whisked immediately to Sick Kids. He has Situs inversus (mirror organs) and had a few complications that went with this (although he was much better now). Her daughter had difficulty breathing and a few abnormalities, such as a cauliflower ear and a few other things, such as an umbilical hernia. They were in two different hospitals for months. I could empathize a bit with the NICU stay, with the worry and having to quickly get your head around new and seemingly frightening things. I told her, as we sat in our island in a busy mall at the height of the Christmas shopping season, about Wyatt, his heart and his extra chromosome. She flinched, like everyone else does when they hear the words "Down syndrome", but at my casualness, my son's adorable chatter and the recognition that both her still tiny ones too had delays ahead brought her around quite quickly. I also think that watching us have a relaxed coffee together also calmed her a bit and gave her a bit of hope for the future. The first year of twins can be hell; you don't fully understand that until you are in it and you don't understand how far you have come until you are on the other side of it. We took our leaves and as we strolled up the length of the mall, Sean and I talked about our chance twin encounter. We both were of the mind that we were very very thankful... that both our kids had been reasonably healthy, all things considered (AVSD's, chromosomal disorders and inguinal hernias aside), that our NICU time was reasonably short and that we had reached the point of being able to savour a cup of coffee, on a reasonable amount of sleep, before spoiling our kids at Christmas-time.

There is a storm coming, that much I know. I can't see the clouds gather yet, but it shimmers, like a migraine aura, on the periphery of my vision. This year, although one of great promise, will still hold some darker times for Team Logan. That's not a subject for today either, here in our in-between. What we do have is an appreciation of certain parts of 2012. This blog, its growth, its accomplishments, its wonderful fans and yes, even its critics. I am thankful for all of those who read weekly and share some of the things that I put down here. I have been doing this for almost two years... that is another passage of time that causes me to shake my head in disbelief. January 13th is the two year anniversary of my first post, recounting another storm, namely my son's in utero AVSD diagnosis. Soon it will be their second birthday, if you can believe that either.

Here in the in-between, there is comfort; security. Despite what is coming, the sun is still shining here and it feels warm on my face. I am acutely aware of my many blessings and my surroundings, as I sit here and write. I'm aware of my coping mechanisms too, as I wear a Hawaiian style shirt and flip flops with my khaki's rolled at the ankles while the reflection of a Canadian winter wavers ever so slightly on my screen as I hit each key. There is thankfulness. There is much gratitude. My daughter and I are very alike, as I wind my fingers through this time and settle with it's familiar softness. 2013 has started with contentment. There's a lot to be said for that. I will excuse myself for the time being however as there is a little girl with a bunny who is gazing up at me with dark pools for eyes as she puts her head on my knee. There's another little one behind me making clear "lalala" noises at some of his favourite toys; yet another sound that will raise eyebrows with his workers. I think those phone calls will wait until tomorrow. The in-between is much more promising for today.

Saturday, October 13, 2012

Thursday, February 16, 2012

Happy Birthday, Babies!

A whole year has gone by.

I'm still in shock at this realization.

One year ago today saw the beginning and the end of a lot of things. One year ago brought us some harsh realities, packaged up into two bundles of joy.

Last year, my twins were born six weeks early. Wyatt first, then his sister Zoe a few minutes later. Wyatt weighed in at 4 lbs, 13oz, while Zoe was much smaller at 4lbs, 1oz. Both had oodles of dark hair and the gossamer skin of prematurity. Both had bright blue eyes. You could tell right away that Zoe was going to be the spitting image of me. To the medical staff at least, you could tell right away that Wyatt had Trisomy 21 or Down Syndrome.

I was certain of his diagnosis as I looked over at his warmer a few moments after he was born. Each baby had a team at his or her bedside, including a physician and several nurses. Zoe's team was joyful; there were jokes and occasional pauses in their work as they reflected on some nuance of my beautiful, yet feisty daughter. Wyatt's team were a stark contrast. They spoke in hushed, respectful tones as they worked on my son with efficient, businesslike hands. My husband jokes that my writing is often a string of homilies. He's right. This is the moment that began as I looked back and forth across the surgical suite, comparing and contrasting Team A and Team B as they saw to the needs of my newborn children.

Wyatt's cry at birth was different than Zoe's. When he let forth the first breath of air that he had sucked into his tiny lungs, he sounded all the world like the newborns you hear on TV... only in short bursts. Zoe's pitiful wail would change shortly to the commanding screech she has now, but I did not hear her until after she had been totally suctioned out. "She is the one that sounds abnormal", I remember thinking to myself. "He sounds just fine to me." I would later understand that she sounded like any other premature baby, but at the time, it gave me something to rationalize. After the Neonatologist gave his awkward pronouncement, they eventually brought Wyatt over, sleepily bundled up for me to see. I gave him a quick peck before he was taken away by his procession of gowned attendants to the NICU. "He doesn't look like he has it..."

Zoe was brought to me, mummified and scowling. She was so tiny... so much smaller than her twin. Even bundled up, she was still smaller than a football. Zoe was too far away for me to kiss and I was about to ask for her to be brought closer when she was handed off to my husband and they too were whisked off to parts unknown.

"So small... So small. Please be okay... Please..."

I did not get to hold my children until the next day when I dragged myself and my IV pole almost the length of the hospital to the NICU. After a night of lying half awake and in constant pain, I needed them and they needed me. Anyone that ever refers to a Caesarian section as "the easy way out" need only talk to me and hear the particulars about that walk. My nurse was very concerned as I forced myself along... after all, we were supposed to be just dangling my legs over the end of the bed and here I was, on a mission, with my ass hanging out of a johnny gown. She knew better than to stop me however, for at that moment, I would have crawled there over her broken body if that is what it took.

The babies were in separate isolettes and I visited each one in turn. I was there for over three hours as my nurse came and went with a wheelchair, hoping to coax me back to my bed where I needed to rest. The sad part was that I was resting; the NICU, despite housing very sick babies, is the quietest place in the hospital. The frequent spine-jarring announcements are hushed, the lights are muted and everyone talks in dulcet tones. I spent a good while with each of them and examined Wyatt myself. His ears were smaller and lower on his head and had a telltale fold. His eyes were almond shaped with epicanthal folds. His nose had barely a bridge and his face was flatter than hers. His skull was shaped differently, being wider at the back and smaller at the front, giving the appearance of "points" on either side. The back of his head was flattened and you could feel that his soft spot was open in a V to his eyebrows. His hands, much to my delight, did not have a singer palmar crease and his toes did not appear to be parted with a sandal gap. Other than his heart, no other "abnormalities" were discussed. "Maybe he's Mosaic... " My husband came and finally convinced me to return and if not rest, eat. Which I did, ravenously.

Flash forward a year and here we are. My husband is in the kitchen putting stew in the crock pot and the kids are having great time playing together on the floor behind me. Those fragile little humans are now thriving babies, who astound and delight us daily. The only thing that has developed more in the last year is us. Our thinking, our way of doing things. There was a time where Wyatt's diagnosis would have meant something terrible. (It isn't.) There was a time where I would not have thought that I would have so much interest in genetic disorders and have time to make a difference. (I do). There was a time where it seemed that nothing was going to be right again. (It didn't turn out like that at all). There was a lot more born a year ago on this day than just these two babies: Team Logan, our network and support systems, our awareness, our desire to educate and advocate. Two parents of a special needs child came into existence too. We have all come so far. It has been very difficult at times, of that I will not lie. We've made therapy a casual everyday thing, something we can do while we play. We make mealtimes fun. We explore our world through the kids eyes, whether they be blue, brown or have Brushfield spots. We love our son and embrace his differences just as much as we do his "sameness".

Today we celebrate many things along with the birth of our children. Today will celebrate life and love. We celebrate inclusion, we celebrate acceptance. We celebrate strength and endurance. Knowledge, education, awareness, advocacy... the list goes on and on.

We celebrate new beginnings today.

Happy Birthday, Wyatt and Zoe. You are both perfect in every way.

You guys ROCK!

Wednesday, December 21, 2011

The Best of Times, The Worst of Times...

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way..." --Charles Dickens, A Tale of Two Cities

This year has been all over the place for my family and I. It's been a roller coaster at times and mind-numbingly tedious at others. Our life this year has had more twists and turns than your average goat path through the mountains. It's beginnings were inauspicious enough; 2011 started, as many years do, quietly in my basement. My OB had taken me off duty a few days earlier; instead of me greeting the New Year alone at work, we did so together, in front of a crackling fire. My brother and his fiancée were visiting and the evening was filled with snacks and Rock Band and footage from Times Square. It was probably one of the last "normal" evenings for us as I stuffed my face with mini beef wellingtons and patted my enormous belly. A normal New Year's Eve, with kisses at midnight, phone calls to far away parents and the frost twinkling as our company crunched down the drive towards their waiting cab. Normal. Typical. We put the leftovers away and went to bed shortly after 2. After all, our son would be up and raring to go sometime after eight.

A few days later, nothing was normal. My aunt had passed, a friend was critically hurt and my unborn son had a hole in his heart and likely had Down syndrome. A week after that and I was lying awake on the futon in the future nursery writing (what would eventually be my first Down Wit Dat entry) in my head. At first, it was a crie de coeur, an open letter to my family and friends, explaining what had happened and what had changed. It also put the unintelligible screaming in my head into words, ones that I did not yet dare speak aloud. It worked... That "note" and the ones that followed helped keep my loved ones informed and kept me focused. The writing was raw, as rough and bleeding as the emotional wounds it described.

People began to contact me and ask for new updates. As new information came forth about my son, it was easy to do so. Once the babies were actually here, once they were home, it seemed to be a never ending parade of doctors appointments and things to do. By the time that they had been home two months, Wyatt had gone to four doctors (two of them more than once) and Zoe had already had surgery on an inguinal hernia. Each new thing was mind-wrackingly, gut-wrenchingly stressful, but we soldiered on. I started putting my entries together into what would eventually become this blog. The kids grew, they developed... eventually I tagged in my husband and I went back to work as he took over the house. Here we are in December again... and where we are now seems so remote from last New Years Eve that it seems to have happened to some other family.

When you consider it as a whole, it does seem like a bunch of "bad luck", a string of negativity that would threaten to garrote the best of them. One could look at our year that way. It has been pretty painful in spots.

I however, refuse to.

To write off 2011 as "a difficult year" would be to negate all the positive outcomes as well. After all, this was the year that we welcomed not just one, but two new members to our family band. Two beautiful, personable, remarkably healthy babies who are completely nibble-able. From their respective medical encounters has come a wealth of knowledge that we have gladly passed on to those that wanted it. Through Wyatt and his "atypical"-ness, we have discovered much joy and learned to live, not task our way through every day. We've gotten closer as a family and set free a lot of the emotional flotsam that has slowed us down. We've learned the value of hope, the necessity of celebration. We've learned how much we love, and how much we are loved.

That does not mean that we gloss over the tricky bits either. Instead, we have embraced our "difficulties" and used it to fuel our endeavours. This blog for instance, and any and all education and outreach projects that have and will spring from it... would not exist if I did not experience this year in it's entirety. My determination to make this process easier for the 'new parents' that come after me is a direct result of that. Each new insight into how much work there is left to do helps me get out of bed in the morning. Any anger, any pain that I may have regarding Wyatt, his health or how the world sees people like him is being re-channeled and reborn into dedication, purpose, even passion.

Early on I was confronted with a question: if I could change Wyatt so that he no longer had Down syndrome, would I? Then, when everything was fresh and new, I answered with an emphatic yes! Now, the answer is much different. I didn't want a "Down Syndrome baby". Wyatt was Down syndrome in my mind, and it, he. To me it was the end of the world. Now, it is no longer the end of everything, but a beginning of a new thing. My thinking has evolved. If I could somehow change his genetic make up, I don't know that I still would.

But, even as I'm writing this, I ask myself why would I even bother at this point? Yes, he could probably go on to med school. Or not. Maybe he'd be a star athlete... or not. The list of things that he could go on to be if he didn't have DS is a long one, for sure. I know this as I listed them off to myself, one by one, once I found out that he had it. He may not be a dashing surgeon or a brilliant psychiatrist, but he will also not know what it is like to work for an unforgiving public who only cares about what they think you should be doing for them, right now. He may not be the star quarterback of his high school football team either, but he also won't know what it is like to blow a knee and be a washed up piece of meat at 18. He will probably be subjected to ridicule and sadness at some point at the hands of some cruel, hate filled individual or even an ignorant one that "doesn't mean it that way". Those may even happen at the hands of a person of authority. As time has gone on in this year, my answer has changed a great deal; instead of fearing the condition that makes the world a big bad place for him to be in, I want him to keep the unique perspective that DS will allow him to have that his brother and sister will not.

We have no illusions of the future. Maybe we are in a "bubble" of happiness right now, as my critics would contend, or not. Both my husband and I know that as time goes on, as his siblings develop into the adults they will become, Wyatt may be left behind at some point. We don't know when, or how or even "if". As his features become more pronounced as he gets older, there will be probably be more isolation, less acceptance at the hands of his typical peers. Or not. Perhaps our fears are as unfounded as our initial ones. One can only hope. If I have any impact at all, I will lessen that separation, even if only a little.

This year has been both the best of times and the worst of times. So much good has come out of this year. So much love, so much sharing, so much learning and so much acceptance. Some may say it's a matter of spin. I would answer that it is a matter of new awareness and growing acceptance. This year may have been riddled with seemingly profound pain, but more importantly we have experienced profound growth.

Yes, our family was forced to fish much deeper water than most, but ah, the sights we have seen... All from a little chromosome. All from a little boy. A little boy that has garnered the amount of enthusiasm generally saved for a Stanley Cup Win, simply for learning to hold his head steady. For laughing. For pulling himself into a sit. Once. Each new feat is as sweet as the monk's strawberry. You appreciate the effort, you delight in the simplicity, you savour the flavour.

These are indeed the best of times. Yes.

Saturday, October 15, 2011

Birth Stories

Birth stories are unlike any others. They are a touchstone for many women, for many families. I have seen it over and over, women bonding over their stories of pain and fear and finally joy. I can't think of a greater leveler than birth. Sometimes the story is happy, sometimes it is not. Sometimes it just ends a bit differently than you expected.

I have a little baby with Down syndrome (and a twin that does not). In the time since their birth, I have found that there are elements in our story that are very similar to so many others. I have read quite a few since then and there have been some, that for one reason or another, have really resonated with me. Today, instead of me just telling you any old thing, I am going to do something a little different. I am going to share stories of other parents and other babies with Down Syndrome. Grab a cuppa and a snack and perhaps a handkerchief. Today is about Birth Stories... with a little extra.

A Birth Story

Nella Cordelia: A Birth Story

Lucy: A Postnatal Diagnosis

The Unplanned Journey

Mat's World

Each of these links is a story of anguish and of love. Initially there is sorrow, but out of that has grown great joy. Just like us. I hope you like these stories as much as I have.

Just in case you are new to this blog, here is our story:

It Only Hurts When I Breathe (Wyatt's Diagnosis)

The Waiting Game (Visiting the Specialists)

The Best Laid Plans (Wyatt and Zoe's Birth Story)

Checking In (in the NICU)

One more little thing before I head for my bed: our story has been shared at Maternity.com. I was interviewed last month and the story published on Thursday. You can read it here. Thanks to Jennifer Allen for the opportunity.

Enjoy your Saturday; I hope you enjoyed Story Time.

Good night, little one.

Friday, September 30, 2011

The Big Tell

On Wednesday I was able to attend our DS group put on by ICDSP. Unfortunately, we had to leave early, just as the discussion was starting to get good. It was a pity too, as it was a topic that has a lot of emotion surrounding it. The question was put forth "how do you tell people that your child has Down syndrome?"

We took the easy way out (in a way) when it came time to inform family and friends about Wyatt. I did it en mass. I did it just like you are reading here: I blogged about it. That's how this blog started actually, all you see here stemmed from "updates" that I wrote to my friends and family on Facebook. I did it that way as that option was available to me; the ability to reach as many loved ones, friends and colleagues all at once and to give them all the correct information about Wyatt's AVSD and (then probable, now confirmed) Down syndrome. Telling individual people has been harder. Colleagues that I am not on Facebook with, people in the neighborhood... there will always be that moment of uncomfortableness.

It is just that: uncomfortable.

For me, it was never feelings of embarrassment or failure. The little psych nurse on my shoulder made sure of that. Most of the time I felt bad, in a way, for the people I had to tell as I knew it would at best be awkward and worst it might "ruin their day". Other days, on angry days, I would get irritated at the inevitable head tilt and the sympathetic sigh of "oh".

"The Big Tell" as it's known around here, is just another example of how much education, how much work there is to do in regards to Down syndrome. It didn't seem to matter who we were telling, the answers seemed to have the same basic lack of understanding. Sean works in a warehouse with a high immigrant, low education population. Initially he got confused looks as a lot of people did not know what Down syndrome was. The R word came up, people either didn't know what to say or launched immediately into a story about someone they knew or saw. The stories didn't always end happy.

When I told friends and colleagues, I got a lot of wishful/hopeful thinking. Initially it would be his appearance ("He doesn't look it" or "Are you sure he isn't mosaic?" or "Are you sure he has it?") I would carefully explain that he was karyotyped at birth. Then it would be "he must have a mild case" or "he looks like he will be high functioning". Then I would explain that there is no such thing as a mild case... you have it or you don't and how the extra gene expresses itself seems to be totally random, like squirting paint at a canvas. We don't know what challenges he will have until we get there. We won't know if he will be able to walk or run or sing or play music or balance a checkbook. The conversation would get uncomfortable. Eventually I got tired of explaining and would just nod and smile.

It didn't seem to matter what the level of education (some of the above were physicians, nurses, therapists, social workers, you name it...), there was an overall knowledge deficit. Even I was shocked to learn how many different body systems can be affected [read: all of them]. That little extra manifests itself in some strange ways, from itchy skin to different hand prints to heart defects. Even from our little random sampling in group, you can see the extra copy in action as this child has this particular problem and that one has none.

We were lucky as we knew a month ahead of time. Many people that I have met (either in person or virtually) did not know. Their Big Tell would be laced with more anger and surprise than mine was, I would imagine. The anger is real too... why my kid? I have seen many expectant mothers drinking, smoking and doing drugs. These people go on to have healthy babies that they cannot care for... Why is my child affected? Why me?

Each new mother's situation is different as well, the manifestation of their anger/grief is unique to them. For me, I was jealous of other Moms with only one DS child. It makes little sense now, but at the time, in those early days of the NICU when I was typing "Down syndrome" into a lot of search engines, I would be jealous of DS Moms who only had one baby or had one at a time. "Oh sure", I thought to myself, "your kid can be all they can be... you have the time", whereas I had to divide my time between two babies. Those days are long past, but it is the truth. Now, I go to group and I am almost apologetic to bring Zoe as I know that some of those Moms who have just had their first child, a singleton with DS, would give their eye teeth to be in our position.

It hasn't been all sunshine and kittens over here. In that month before they were born, I wrote, I went to appointments and I painted. I tried to make something constructive out of the anger that came from Wyatt's diagnosis. It was a band-aid at best, but what else could I do? As well wishers would ask how I was doing, as those friendly hands would pat my belly, I felt like screaming at them. "How do you think I feel? My unborn son has a hole in his heart! He probably has a chromosomal disorder! How am I supposed to feel right now?" How could they ask such things, I wondered. How could they not know? It felt like a neon sign was hanging over my head, for all the world to see. Instead, I would smile at a clerk and take my change or say "Not long now!" to the Mommies at the bus stop in the morning. Maybe it wasn't the healthiest thing to do, but it got me through. I was like a size 20 bridesmaid in a size 14 dress. I knew that if I exhaled only once, just a little bit, I would totally come apart at the seams and there would be no stuffing it all back in again.

That had improved a bit by the time they were born and in the NICU, but I still had my moments. When I wasn't at the hospital with them, I was at home, either getting what sleep I could or trying to reach out through the internet. That is a difficult process too, as there are only certain times that you are actually up to this sort of thing. There were days where I would type "Down syndrome" as a search term and have my finger hover over the 'enter' key, unable to press it as tears filled my eyes. Other times I would be fascinated at some obscure part of Trisomy 21 and the tears would come, seemingly out of nowhere.

Time does heal most wounds and education eases the troubled mind. Now that I am back to work, I am running into lots of people that I haven't seen in a while. Most know about Wyatt but there are still a few here and there that don't. It is still a bit awkward, but I think my positive approach eases things a bit. That positivity would not exist if it weren't for the work I've done in the mean time.

I had a friend tell me that she had read one of my postings where I had gone to the wrong doctor's office. She marveled at how well I was doing as she felt that she would have fallen apart right then. I chuckled and replied "Well, you just have to keep laughing", which is true. If that incident had happened a few months earlier, I would have had a different story to tell... I probably would have fallen apart. But, I didn't. I face palmed myself and got on with my day, like I do most of the time. It's about perspective.

Perhaps if Wyatt had needed his surgery earlier, life would be totally different, but I don't think so. We would have hit our stride a bit later maybe, but we'd still be here. Again, it's all a matter of perspective. Down syndrome is not the worst thing that could happen by far. Instead of having one "normal" twin and one "sickly" twin, I have two reasonably healthy babies who are both special in their own right (as is their older brother). In fact, it was Zoe, the "normal" twin who needed surgery and a hospital stay. We are lucky to have him in an age where DS resources and understanding have never been better (although there is still a lot of work to do).

If I had any further advice to new or expecting DS parents it would be this: It is not the end of the world. Your little one will surprise and delight you daily. Tell the people that you want to know about your child any way that you want to. Other people may have issue with this, but that is their problem, not yours. Educate yourself as much as you can.

If I had to do it all over again, I probably would do the same thing. Except, this time, I would have posted the following:

Dear Friends and Family,

Sean and I are thrilled to announce the birth of our twins, Wyatt and Zoe on February 16, 2011. Although a little earlier than expected, Wyatt came into this world at 10:18 pm weighing 4 lbs, 13 oz. Zoe followed him three minutes later, weighing 4lbs 1oz. Both are healthy and happy. As a precautionary measure, they will have to stay in the NICU for a while. Both have dark hair and brilliant blue eyes and Wyatt has Down syndrome. We're not sure, but so far it seems that Zoe is the spitting image of me.

We will try and keep everyone updated as time allows. Pictures to follow!
Jxox

Down syndrome is as much a part of Wyatt as brown eyes are to Zoe. It is just part of him. It will affect a few things, how well he does in school, what he does with his life, but it will not change how much we love him or his siblings. It is not something to be ashamed of, nor is it something to go overboard with in the other direction, either. His life will involved scraped knees and hurt feelings, just like the other two.

His life has purpose. He is loved and will love. I can tell you that right now for free.

Tuesday, August 16, 2011

Tempus Fugit

I am absolutely gobsmacked.

I cannot believe that they are 6 months old today. Six months. Time used to be my friend. Then, one day, I caught her whispering about me behind my back... Then things got awkward. Now, we pass like strangers, no longer making eye contact and no longer on speaking terms.

Six months ago today our world was officially turned on its ear. Six months ago Wyatt decided that he was making a break for it and dragged Zoe, kicking and screaming, into this world. She hasn't stopped doing either since.

Six months ago I made a decision. As I lay there after my surgery, in pain and missing the familiar movements in my belly (that were now living in the NICU), I told myself that no matter what the outcome, I would fight for my son. Make no mistake, I would fight to the death for Quinn and Zoe as well; when it comes to my children I am like any other Mama bear. This is different. I did not know at that time the full extent of Wyatt's heart issues. I did not know what other characteristics, hard markers or physical deformities that he may or may not have. I knew that he had Down syndrome and that he was my son. My grief was so raw then I could barely draw breath. As the clock ticked away the eternity between me and my pain meds, I made my plan. I made a promise to my kids and I prayed. Alone and in the dark, I prayed to whoever was listening to give me the strength to see through what I had to do.

I would ensure that he (and his sister) had exceptional medical care. I would ensure that he had a loving home and was surrounded by positive, supportive people. I would do my best to make sure that he had anything and everything that I could give him: everything ranging from love and support to antibodies and DHA. He would have all the encouragement that he needed; we would make sure that he would be the best he could be.

It also meant learning everything there was to know about his "little extra" and what that would mean for him. What that would mean for us. What that would mean for his older brother who was not just displaced by a new baby, but two... and one with a disability. What that would mean for his twin, the only girl in the family.

We would all have to overcome obstacles. Our own prejudices. We would have to change our way of thinking in order to fully open our minds to this little boy. That would also mean distancing ourselves from anyone who was not fully accepting of any of us, not just Wyatt.

I also had just over six months to do this in, partially due to my return to work, but also because of Wyatt's surgery that was supposed to take place around this time.

I look at my son now and I am so very thankful that his heart decided to do a little DIY and essentially occlude the bottom of the AVSD. He is still cool to the touch and more tired than his sister, but thus far we have been spared the heartache that the onset of congestive heart failure would have brought. I try and imagine what it would be like for my tiny boy to be in the hospital, fighting for breath, waiting for the surgeons... and cannot. Thankfully, I cannot. I am so thankful to the powers at be, the positive thought, the fates, the gods, destiny, the universe, his mothers love, karma... or whatever it was that closed that hole when the experts said it wouldn't. I used to joke that Karma owed me big time; I'm willing to consider us even.

Now, the time has gone and the countdown to my return to work is marching on. We've met many goals and in some aspects, more so. Wyatt and Zoe have done exceptionally well in this time; Wyatt has had his surgery pushed back until he is 3 or 4 and Zoe had an unexpected hernia repair but has totally bounced back since then. They are still small, but are slowly catching up to their peers.

They, and we, have come such a long way...

The next six months will see more challenges; me trying to balance work and breastfeeding, Sean adapting to life at home, introducing solids to the babies, them learning to sit up and crawl... and so much more.

On this night, six months ago, reaching this point seemed impossible. The idea of a future where things became routine, almost commonplace with our family seemed ridiculous. In my fever and pain, it seemed a distant dream. Yet we are here. Together. Going about our day, much like other families. The world did not end, I have healed and Wyatt is a healthy happy boy that today of all days, decided to smile spontaneously. All day. Non stop.

I am completely and utterly in awe of my life. In that life is a little boy with Down syndrome that has taught me more about living in the six months that he has been on this earth than I learned in the 39 years and two months that preceded it. In his smile. In his breathing. In his little bean bag body that snuggles into my chest. In the little hand that traces across my arm. Our time together, however long or short, will not tick idly by. It's already been six months. Look how far we've come.

Added to the 'Define Normal' Blog Hop! Find out more @ Just Bring the Chocolate

Thursday, March 31, 2011

Checking In

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.

Tuesday, February 22, 2011

The Best Laid Plans

[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 "birth story", full of high risk pregnancies, emergency C-sections, twins, medical stuff, diagnoses and post partum blues. -Jxox]

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 Neo-natologist came over with his sheepish look and cleared his throat what he was going to tell me.

I knew that Wyatt has Down 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 Down 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 trying 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 DS.

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 syndrome 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.

Thursday, January 13, 2011

It Only Hurts When I Breathe...

[Note: This is one of the letters that I posted to my friends and family on Facebook when we received Wyatt's inter-utero AVSD diagnosis and learned that there was a 75% chance of him having a chromosomal abnormality, probably Down syndrome. These are rough, these are raw. They are painful... and totally didn't have to be if I had any understanding about what DS was in the first place. It is these early days that prompted me to start Down Wit Dat... to educate and to effect change. Down syndrome is not something that needs to be grieved. Ever. -Jxox]

This is the hardest thing I've ever had to write.

By hard, I don't mean actually getting the words in some semblance of logical order as I've been waking up at 3am writing it in my head for about a week now. It won't leave me alone and if this is what it takes to get myself organized, than so be it.

I should probably explain a little more...

Last week was one of the roughest I've ever had to experience. On Monday, my Aunt passed away... by Wednesday, one of my friends/colleagues had been in a horrific MVC and it was uncertain whether she would pull through. Thursday my world fell apart at a doctor's appointment and Friday was the funeral. I've been a disaster since.

In order to make any of this make sense, I have to be chronological and some of you need a little background information.

After a year of trying to give Quinn a sibling, we gave up last summer. By July I was pregnant and by September we knew it was twins. Once the initial shock wore off, we did the usual screening tests known as Integrated Prenatal Screening or IPS. I was very distressed a few days later when my family doctor called to let me know that Twin B was fine, but Twin A had been flagged as potentially having Down's Syndrome. I was stunned, especially when I went back to the ultrasound pics I had been given and consulted the fetal measurements that I had covertly copied down. One of the measurements they consult is known as the nuchal transparency which is basically the amount of fluid that collects behind the baby's head at the neck. The larger that number, the higher the risk of Down's. Off the top of my head, I believe the cut off is 3mm; Twin A was 2.5 (Twin B was 2.1 and if memory serves, Quinn was 2.6). Not an alarming number. I did some research and scanned the Ultrasound images until I nearly went blind, looking for nasal bones and a few other clues that might give me a little hope. To me, I must have flunked the blood work as the babies looked fine. My doctor suggested we go for genetic counseling and we took the first appointment at Credit Valley.

The genetic counselor was quite kind and explained to me that the blood work was pretty much irrelevant as I was having twins. Furthermore, with my age (38 at the time), I had a 1:125 chance of having a baby with Trisomy 21 (Down's Syndrome). With my test results, I had already beaten the odds as my results were 1:300. If we were really concerned, we could arrange to have amniocentesis, yet with those odds she wouldn't even recommend that. Sean and I looked at each other an said no thanks as the odds of miscarriage with the amnio' were twice that of actually having a Down's baby anyway. Besides, they wanted to test both twins and the idea of something happening to one of them distressed me greatly. We left the appointment much happier, with the knowledge that yes, we may be holding a Down's baby in several months time, but the odds were on our side.

This all took place just as the nausea kicked in; I spent (literally) four months with my head in the toilet. Since my Dad was undergoing his chemo at the time, we were both pretty pale and easily nauseated. I opted for no meds but I was pretty close to taking up Dad's offer of a couple of Zofran on many occasions. Coupled with shift work in ER in the 'Pod and a few other pregnancy symptoms, I was steadily losing weight and miserable as hell. The nausea let up some time around my birthday at the end of November and it was a pleasure to be able to eat and drink again. My mother's family threw me a lovely baby shower and the twins became real again... finally I was going to be able to enjoy this pregnancy and the promise of joy that it offered. We even chose names: Twin A, the boy was to be Wyatt Donald (the Donald after my grandfather) and Twin B, the girl, Zoe Margaret (the Margaret after Sean's late mother). They became real, separate individuals. As their movements became stronger, you could also start to differentiate a little bit of personality as well.

My belly grew larger, my steps became slower, my breathing more laboured and my temper shorter. I made it through Christmas and by New Years my OB took me off work. Well, as far as we know as Occ. Health seems to be mandated to things difficult, but I digress. She gave me a big lecture on relaxing and how I should try and sleep as much as I can as this was the easy part (she should know, she has had twins herself). Since Sean was actually able to go with me for a change, she made sure that he knew I was to be calm and reasonably stress free or as she put it "you're going to end up one of those patients in your pod". Duly noted. We went home, Sean took over most of the household chores and I continued on with my nursery project in between naps.

Then last week happened. One bombshell after another, with little frags here and there such as flunking my sugar test and whatnot. The biggest shocker was Thursday...

You have to understand that so far in this pregnancy I have seen: My family doctor, my OB, the guy filling in for my OB, A cardiologist (and worn a Holter monitor for 48 hours), a genetic counsellor... I've been having ultrasounds every two weeks since November. been seeing my OB bi-weekly for the same amount of time. Going to appointments is almost a full time job in itself for me. I mentioned to the genetic counsellor about my brother's Marfans and since that time everyone has been asking me about that as well. I wasn't all that surprised then when my OB wanted me to see a pediatric cardiologist that also does the fetal cardiology for our area. Naturally, I assumed that it had to do with the Marfans and I wasn't worried at all. I had a lovely time in his office watching his fish and we had a nice chat about Marfans and my brother before he sent me across the hall to have a quick echocardiogram done on the babies (for those not in the know, it's just a detailed ultrasound of the heart). Since I have been ultrasounded to death, I still wasn't worried and prepared to get all gooey.

After the echo, he called me back into his office. He let me know that Twin B (Zoe) was ok, but Twin A (Wyatt) had (most likely) AVSD or Atrioventricular Septal Defect. In other words, my Wyatt has a hole in his heart, one that if it didn't close on it's own, would cause him to have surgery at 6mos of age or so. To make matters worse, he explained that 75% of babies that have this particular heart defect also have Chromosomal Abnormalities. He cited Trisomy 21 (Down's Syndrome) as the biggest incidence. That was about the point I started to cry. He apologized profusely, and I let him know that it just wasn't that, my week had been horrible and I let him know why. He also works in ER and was saddened to hear of our colleague. Then we both got misty and it was downhill from there. He let me know that he was taking the images to Sick Kids the next day to share with some of his colleagues and if possible, fast track an appointment. I agreed, letting him know I would be out of town the next day at a funeral and could he please leave a message. I took a cab home as I could barely stand.

I got in the door and wailed my freaking teeth off for the next 15 minutes before I could get it together enough to call my husband at work and my parents before they left for the two days of visitation and funeral. I basically threw it at my parents matter of factly as that was the only way I could get it out. Sean... was a harder tell. What can I say? I had shock and despair and mother guilt and all sorts of nonsense whirling around in my head. You have to understand that this is one of those times where being a nurse is not a good thing. You comprehend totally in an instant and are able to forsee potential and actual problems and what interventions you will have to employ to get the best outcome. It makes for a very busy brain, especially when you are drawing diagrams and health teaching in your sleep. I'm only sleeping 3 hours consecutively now anyway...

I went to the funeral and managed to keep it together for the most part and focus on the loss of my Aunt. On the way home I borrowed my brother's cel and checked the messages. The babies cardiologist had indeed left a message, saying that he was getting them to book me in for next Friday (as in tomorrow) and right after was a message from the booking girl. So tomorrow, I have to be at Sick Kids at 9am for another echo and an indepth consultation with a cardiologist. Then it's fly home to feed everyone and then go to my OB appointment in the afternoon. It's going to be a full day...

So now, much as it's been since Friday, we wait. We wait to get any slip of information that might be helpful or might provide a fragment of hope. AVSD in itself is not a death sentence and yes, neither is Down's. I realize this. Both are going to be fucking hard though. Both are also the second best scenario when you take into account the other chromosomal problems that AVSD is associated with. Aside from Trisomy 21 (Down's), there's also Trisomy 18 (Edward's Syndrome) which IS a death sentence, Polysplenia which is a drawn out death sentence and carries with it many horrific defects of the organs... and quite a few more that I could scare myself more with. On the other, non chromosonal side there are also things like Tetrology of Fallot or "blue baby syndrome", which could also occur with any of the above.

Ultimately, we don't know what we are facing. We don't know if amnio is an option right now, we don't know if we'd take that option, we simply have no idea. That, right there, is where the fear comes from.

Why am I doing this? It's really the easiest way to tell as many of my family and friends as possible. I can't keep explaining all of this over and over and fucking over again as it is just too much for me to handle properly right now. I also find myself having to repeat myself frequently and since people tend to retain more of the written word than the spoken, it was another easy solution. The "telephone" phenomenon has pretty much guaranteed that I can't trust others to pass this on properly as there are specific details that are easily missed.

So there you have it. It's a lot to digest and I'm trying to do so to keep from going over the top. I'm grumpy, I'm tired and I'm trying to stay calm. I also really don't need to hear any crap about still having one healthy baby, etc, etc as that is surely not the fucking point. With nine weeks to go, tops, we don't know if we are planning for one baby or two. We don't know where I will be delivering, who will end up in what hospital... if we are going to be planning a funeral. We simply do not know.

That, in itself, hurts more than anything.

You'll forgive me while I hope and pray for the other 25%...

Subscribe to: Posts ( Atom )

What You Have to Say About Down Wit Dat:

"Just wanted to let you know how much I admire you. I know you fight a lot of demons, both yours and for others, yet you still maintain that fantastic sense of humor, and more importantly, fairness. You are a constant source of light in the darkness, because you are beautiful inside and out..." - S. R.

"...Wonderfully written and one thing Jen does with her writing is make you stop and think ...and think hard." - J. Toner

"Before I had my little L., I never knew anyone with down syndrome, your page has given me so much hope for my little boy, the people who post pictures of their children and the things that you post are wonderful, its made it easier for me to understand and get used to, thank you, keep doing what your doing with the good work, much appreciation. X." - L. Barnes

"Your post (and the posts of others that you linked to) actually made me tear up a little. Growing up with a brother with Downs, I actually got into fist-fights because of "that word". Hearing it used as a derisive and insulting term by people who should know better (or by those who do know better but are just looking for attention in the case of Coulter) is NEVER ok. Thank you for speaking out." - I. Thomas

"I love these history posts. This is a TON of work on your part, thank you so much!" --N. Haegele

"I don't have any children yet, and I'm not sure how I ended up reading your blog. But it is absolutely inspirational. I'm so glad Wyatt was born into your family where I am sure he can live a happy fulfilled life." --artandtourism

"Above all, Jen is an amazing mother. She is honest and real, and inspires me everyday to love my "typical" child the way he needs to be loved, respect him as a person, and not even for one single second take him, or anything for granted. She allows me to venture into her life, and care about her and her family. What dear little children she has blessed the world with. She is planting seeds, nurturing and growing her family (and extended reader family) into people who will make this world a better place. Why aren't we all more like that?" —Penny

"Jen and her family have an amazing story and mission. Jen's writing reflects the difficult and triumphant steps of life with a special needs child; twins at that, and a older sibling. Thank you for sharing your families' strength with the on-line community."--S.B.

"I think I'm a little bit in love with Jen, and if she lived down the road I might just be a blogging groupie, not because I'm a crazy stalker I hasten to add, but because the easy warmth in which she tells her story convinces you that you are simply having an easy chat with your best friend. She has a subtle wit and craft to her blog posts, they are not just splurges of untamed emotion. This enables her to not only tell her story with honesty and in an enjoyable way, she also manages to impart a message without coming across as patronising or preaching. It's a rare gift for a blog about special needs."— Renata

"Having a child with special needs can be an isolating experience -- even more so when you live half a world away from your friends and family. Due to this, the internet became my primary source of support and camaraderie with other parents in similar situations. I read dozens, if not hundreds, of blogs about being the parent of a child with T21, and though most had positive points, for the most part they just didn't 'speak' to me and what I was feeling. Then came Jen and 'Down Wit Dat'. Suddenly, I heard a voice that was in harmony with the things I was feeling and going through. Her writing is so brutally honest, while at the same time insightful and informative...not to mention FUNNY! If there has been one thing I've learned on this journey, it's the importance of keeping your sense of humour -- even when you seem to be losing your sanity. Thank you so much, Jen, for putting out there the human, REAL side of our special club -- and being a voice for those of us that are so often unheard." — Dee

"I love the honesty, Jen never glosses over the difficulties and never fails to celebrate the victories. My children are not special needs but I can always find commonalities and it has opened my eyes to the fact that people with Down syndrome are not as different from the rest of us as they might initially appear. Since I've known Jen and been reading her blog my attitudes toward respect, and what it means, have changed. "The "r" word" particularly hit home as I had been ignorant to the effects of the use of that word. I do my best to help spread the message."--Susanne

"I have been following this blog for months now. I have nothing but positive thoughts and warm fizzy feelings when reading it. My only regret is not having found this blog when it was originally started. One piece that particularly sticks out to me, was the blog about the "r" word. I don't think I have actually cried so much reading a blog that wasn't about someone dying. I printed it off and shared it with many friends, because Jen is right. She struck a nerve and made me realize that not only myself, but there are many others around me that use that word without realizing how powerful it really is. Down Wit Dat is a blog full of enthusiasm, awareness, whole heartedness, truth, encouragement, laughter, but best of all, its full of Jen, FAMILY, and a look at what having a special needs child is about. Keep writing. You're amazing!" —B. Nason

"I love Jen's take on the special hand that she and her family have been dealt. I especially love that while she shares all her son's small victories she doesn't gloss over the challenges that she and her family face. The best thing I love about Jen and her blog is that she is constant supporter of the rights and challenges of kids and adults with Down Syndrome. She has provide a lot of insight that has opened my eyes and many others. I especially loved her blog about the "r" word. It opened dialogue with my family, friends and groups that I am a part; and I am much more conscientious about the words I used to describe people"--V. Saenz-Brown

"Jen's blog is wonderful! While I do not have a down child, as a mom, I relate to the everyday struggles of just doing your best, of the struggles, the heartaches, the joys of everyday life. Jen writes in a positive and uplifting style with just the right doses of humor thrown. Great read!" —Terra

"This blog is written from the parents perspective, which is important. Jen's story is not unique, but the way she tells it, with humor and honesty is wonderfully refreshing. It brings a real perspective that people can understand and relate to, and is a resource for parents of not just Down Syndrome kids but of all kids to know that life may not be perfect but that everyone has a unique way of dealing with it."—Kimberly

"I too am the mother of a down child. It gives me great giggles, sorrow, and camaraderie to read her blog daily. I find it makes life's little challenges more bearable. She is honest, upfront and a wealth of information. And I think her attitude is one many of us share and embrace. Even if she does not win, she is a huge winner already in my book. Lots of luck and love to her and her amazing family." —L.Grassa

"I love Down Wit Dat because Jen is so honest about her experience as a parent. Jen is not afraid to write about her vulnerability, anger, fear, joy, or love. She's an amazing writer! Jen's description of her blog is so bang on! I laugh and I cry, sometimes simultaneously."—Marla

"I am currently a Disability Services major in college and for my one class we had to find a blog by a parent who has a child with a disability to follow and discuss with the class every week. I have been following your blog for a couple weeks now and I get so excited to talk about little Wyatt and what an amazing family he has and the struggles and victories that you all over come daily! Someday down the road I hope to have children and if I am granted a special needs child I can only hope that I can handle everything that comes my way as positive and good as you do! You are doing an amazing job and are a great mother! Thank you so much for sharing your story!"--Anonymous

"Your blog is incredibly inspiring. I have laughed out loud, been in tears, and everything in between! it's fabulous." -HDSSG

"If you haven't been told today... you're awesome." - Trevor

"Wyatt is fortunate to have such a mom." - Anonymous

"...Thanks for your honesty and insightful points. It helps put our own thoughts into words to pass on when we encounter the same situations." - P

"I am enjoying reading your blog. I taught preschool/education for about 35 yrs and most of it was spent in CA where there is encouraged mainstreaming. I enjoyed having special needs kids...they bring a special and fun element into the classroom! I also had a young man with Downs who was my class helper at one time...he was so much fun! I wish people knew these things....as there are preconceived ideas..." - Jenny

"I remember speaking with you when you found out about the possibility of one of the babies having some abnormalities, and you did not know how you would handle it. My response was, once the situation arises you will find ways to deal with it. I must say, you have done so well with your children, especially with Wyatt. You are not ashamed to embraced what God has blessed you with, and to share your new found info with others who might be less fortunate, and to those who might be less accepting. I am sure you have empowered many people who are in the same situation and need a little love and support. You've turned negatives into positives. I must say you are an awesome mom. Keep up the good work, it not going unnoticed." - K. Garwood

"... I just started reading from the beginning... I am intrigued. It is so incredibly well written with so much love. There were parts I would start to cry. I felt your sadness and your happiness and your passion. These children are so lucky to have you as their mother. I can't wait to read the rest of it and get caught up!!! Thank you so much for sharing your life with us! ?" - M. Laine

"Just had a few minutes to read more of the blog and I must say I LOVE it! I could not agree more that so much of the info I found as a new mom was SO depressing. I didn't jump for joy with the dex of T21 but it wasn't anything I could change so we accepted -and started to read everything we could get our hands on. Can't wait to read more..." - E. Chesnut

"I love, love LOVE your blog. Thank you for sharing your journey." - S. Wing

"I wanted to say I love your blog. You write so honestly... Thank you for writing so candidly." - M. Antushevich

"Found your page completely randomly while trying to connect with other wine blogs like myself. I do not have any kids or know anyone with Down Syndrome but your blog really captivated me. I guess that is how good it is. Keep up the good work :) " - The Frugal Tasters

"There are going to be many times when i say how courageous you are! I do not think it can be said enough, you take YOUR time to educate and inform and rid parents of their fears! THANK YOU THANK YOU THANK YOU . I wish my kids were old enough to read and understand! Hopefully one day the maturity level will be there so they can and come to appreciate life more not for the big things but for the everyday moments that will mean more than the big ones EVER will! ?" - C. Cochran

"I, too have a son name Wyatt who happens to have an extra 21st! He was born 2/15/11! Thanks for sharing your story. We're in good company : ). " - R. Scheerer

"My daughter will be 8 in Nov. Unfortunately, my parents I felt were ashamed of my daughter. If only they had gotten to know her before they passed on....." - A. Welsh

"I always enjoy your straight forward, tell it like it is posts. People need this information. They need to know how their ignorant, or often well intentioned but uninformed, words and actions are frustrating, annoying and/or hurtful." - Shayna

Monday, January 14, 2013

Breathe

Monday, January 7, 2013

Comfort In the In-Between

Saturday, October 13, 2012

More Birth Stories (31 for 21, Day 13)

Thursday, February 16, 2012

Happy Birthday, Babies!

Wednesday, December 21, 2011

The Best of Times, The Worst of Times...

Saturday, October 15, 2011

Birth Stories

Friday, September 30, 2011

The Big Tell

Tuesday, August 16, 2011

Tempus Fugit

Thursday, March 31, 2011

Checking In

Tuesday, February 22, 2011

The Best Laid Plans

Thursday, January 13, 2011

It Only Hurts When I Breathe...

About Me

(The Increasingly Inaccurately Named) "A Brief History of Down syndrome" Series

Countdown to Surgery

Surgical Suite

Read Our Older Posts

Join Down Wit Dat's Online Communities!

Down Wit Dat

Follow Down Wit Dat on Networked Blogs

Follow Us with Bloglovin'