french fries with mustard

I.
we're sitting around the table, eating lunch.
Blithe and Bram are talking, chattering away the way they do about anything and everything.
Blithe is trying to decide what book she should read for her book report. Bram is in awe of the lego bird he built.

Asher is quiet. staring out the window.

i'm quiet. staring at Asher.

he's absentmindedly eating his fries.
picking up a couple, shoving them into his mouth, then wiping his mustardy fingers on his black pants.

i'm quiet. staring at Asher.


II.
i'm sitting in the foyer at church, pinning the bag of formula to the bulletin board, with Asher in his car seat on the floor. the tape holding the tube in his nose is cut into a heart.
you know, because it's cute.
and it's a heart.
but it's even on both sides, and that seems strange.

the bag is hung up, and i'm priming the line.
i'm checking the placement of the tube.
it's in his stomach.

i'm hooking him up, and starting the feed.

ah, gravity.


III.

Asher's running around
wearing his little backpack.

he's "eating."

and then one day, he walks into the living room.
hands me a pair of scissors.
"mommy take tube out. i not want tube anymore."
"you sure, buddy?"
"yes. i not need tube. mommy, you take it out, please."

so i cut it, and pull it out.

and he eats supper.


IV.
i'm quiet. staring at Asher.

he's quiet. staring out the window.
absentmindedly eating his fries.

and that knocks me out.

to my sweet littlest big boy,

i love you, little dude.

it's 2:30am, and you're fast asleep beside me. technically it's december 2, but you don't know that yet. to you, it's still the first. which, i suppose, makes you both four and five years old right now... five in reality, four in your reality... i wonder which one is righter.

here it is. your fifth birthday. you weren't supposed to be here. you weren't really expected to make it this far.

but you've made it this far.

i couldn't be more proud.

i couldn't be more grateful.

this truly is something remarkable. for a lot of reasons.

sometimes i wonder how we've gotten this far. i guess i could, or should say it's God, and that would be right, so i don't want to leave Him out here. i want you to know that we couldn't have done any of this without His help and guidance and strength and grace... but i don't know... somehow, chalking it all up to God just kind of makes it all seem so trivial and simple. (or at least, that's how it feels at 2:30am.)

frankly, we've gotten this far with a lot of blood, sweat and tears. literally, blood, sweat and tears. it's true, i wouldn't trade any of this for the world, because it has made all of us who we are today. but, on the other hand...

ugh.

to say this milestone is a gift... i don't know. i almost feel like it whitewashes everything we've been through... sanitizes and sterilizes it all... when in reality, you've worked damn hard to get this far. and so have i. and so have countless docs and surgeons and nurses and other workers who are too numerous to mention. and to call it a gift... i'll be honest, dude, it's not really a gift i'd put on a wish list, if you know what i mean. no offence, because i know it's your life and i know it's the only life you've ever known, and i think that on a different journey you probably wouldn't be this beautiful, radiant light dancing along beside me.

but then i think back over the last five years... and i get tears in my eyes. you've come so far. no one could wrap their heads around the fact that you were eight days old before your PDA closed. eight days old. that just doesn't happen. and yet, there you were.

eight days old, and lying in Cardiac Critical Care at Sick Kids... so far from home, in a place that would become a second home so many times over the next five years.

i remember sitting next to you for hours on end. watching you, reading to you, talking with your nurses, listening to your docs, praying to God, staring at the monitors. but mostly, just watching you. it was really all i could do. i just sat there. right there, with you. holding your hand, crying over you, smiling at you when you opened your eyes, cheering you on in your little victories... the first time they took out your breathing tube, each line they could remove, each time your sats and/or heart rate and/or blood pressure stabilized... i feared for you with every challenge, too, though... each time your pressures increased to dangerous levels, each breath you struggled to take, each time your fever spiked, each time your sats bottomed out, each time you got a new line... i cried for what should have been when they gave you formula through a tube, when i had to put you down because you were destabilizing in my arms, when i wasn't allowed to touch you or speak to you or do anything but watch, because that would stimulate you too much and could have killed you...

oh, my sweet little man...

i'm lying here beside you tonight... this morning... whatever... and you're fast asleep, mouth open, arms up over your head... and i want to tickle your underpits. yes, it's bad, but sometimes i can't help myself. you just have the sweetest giggle i've ever heard. probably because i hear it in contrast to everything else.

probably because, so often lately, i don't hear it in contrast to everything else.

i just hear it. that sweet, musical, light and rambunctious giggle that bounces along with you wherever you go. it's just there. just like it is for any normal, little boy your age.

there's a lot in that giggle. there's victory and strength and determination and courage.

and there's nothing in that giggle. no pain or struggle or fear or sorrow. just light and joy and sheer, total happiness.

i joke with people that you run on batteries. you tell people you're a robot. "isn't that sweet," they say, because they think we're joking. they think you're using your imagination, and i'm exaggerating the way mothers do about their little boys who just go go go. because, really, no little boy runs on batteries. i joke about your slow-motion setting, and that maybe next time, dr c can give you a pacer with a mute button.

but that's just because dear me, child! you're loud!

but you know... i joke that you run on batteries, and you tell people you're a robot. if they only knew...

but then, somehow, the fact that they don't know, the fact that they can look at you and just see a normal boy, a normal, rambunctious, baby-of-the-family, goofball boy...

that's the gift, right there. that's the miracle. that's the milestone.

that you're normal. that you're turning five, and you have no idea how huge that is. that you're turning five, and you're having a birthday party on saturday. that you're turning five, and you're just, "i'm turning five!" and it doesn't knock you on your ass in shock and amazement that you've made it this far.

to you, your fifth birthday is just another reason for people to lavish you with attention and love and kisses, and that you're going to get presents and you got a cheque from Great-Grandma in the mail today...

which would be yesterday by now...

because it's 3:03am right now, and you're fast asleep beside me. technically it's december 2, but you don't know that yet. to you, it's still the first. which, i suppose, makes you both four and five years old right now... five in reality, four in your reality... i wonder which one is righter.

it doesn't matter. you'll be five when you wake up. and you're going to wake up. and that's so miraculous.

because it's so normal.

i love you, dude. from here to one side of the galaxy to the other side and back, and then all over again. or, as you mumbled in your sleep a few minutes ago, "i love you more, to infinity and beyond."

love,
mommy
xoxoxoxoxoxoxoxoxo



ps - please, never say "righter." it's not a word. i just made it up because that's how i roll sometimes. i just don't want you to grow up thinking "righter" is a word. because it's not.

sshhh... don't tell Murphy, but...

at the end of this month...

it will be...

ONE WHOLE YEAR SINCE ASHER'S LAST ADMISSION!!!!!!!!!!!!!!!!!!!!!!!

yes, you read that right.

one.

whole.

year.

granted, it's been a year full of appointments and scares and trips to emerg and pacer problems and almost heart attacks and near admits...

but no admissions.

none.

in almost a year.

this, folks, just doesn't happen in asherland.

well, it didn't happen in asherland.

but apparently, it does now!!!!!!!!!!

just sayin'. ;)

i'll post my thoughts and feelings about this later, but it's 11:30 and frankly, i'm tired, so this will just have to do for tonight. but yeah.

a year.

awesome. :D

as 2010 becomes 2011...

i'm thinking back over this past year.

and, um, yeah.

wow.

it began with an ironic twist. having told asher that i refused to bring in the new year in the hospital with him, i ended up bringing in the new year in the hospital... by myself. haha and thus began a(nother) gut-wrenchingly, heartbreakingly, freaxiating, spellbinding, awe-inspiring, breathtaking year.

in january, we finally tasted freedom. asher's vagus nerve had healed and had been eating on his own, sufficient to sustain him, for a couple months. he had even been taking his meds by mouth. and one day, in the middle of the month...

asher walked into the living room and said,

"mommy, i not need my tube anymore. you take it out now."

he sat so bravely as i pulled it out and covered up the site. he smiled and showed off the bandage to blithe and bram. and then he went to bed. and in the morning,

the hole had closed. and all that remains of that (looooooooong) period of asher's life, the only reminder of that struggle,

is a scar on his stomach. and the memories. and the feelings of relief and pride at having overcome such a huge struggle.

strong work, littlest man. {{hugs}}

and then came the spring.

the fontan. the chylothorax. the bradycardia. the fainting spells. the pacemaker. the infection. the fat-free diet. the uber high-fat diet. UTI. (i was going to link to everything here, but it's too many posts, so i'm just going to tell you to read the posts from march, april and may. click on the months here, if you're interested.)

ok, so the UTI and FTT and "butter and whipped cream diet" was at the end of may. and since then...

asher has been out of hospital.

asher started school!!!!!

asher learned to write his name.

asher has lived the life of a perfectly normal, stable, beautiful boy.

aka, tasmanian devil.

with a battery pack.

and so, as this year comes to an end and a new year begins, i hope and pray that our new-found normalcy and stability continues. but, if it doesn't, i know that we will continue to trust and rely on God to give us what we need to get through the challenges we face, whether they are health issues, financial issues, or other unforeseen issues that can arise in day-to-day living. and i hope and pray that you will also know a year of peace, joy, laughter, love, and beauty.

even if it's a wonky kind of beautiful.

happy new year, everyone!! thank-you so much for your love, support and prayers over the last year. let's all try to be safe and joyful this year, shall we?? :)

on this day in history...

i took asher to our local emerg. he was having trouble breathing. i thought he would just need some oxygen and then he'd come home.

instead, we were sent to london.

where dr pepelassis (aka, "pepy") checked out asher's heart.

"usually babies with this condition," he said, semi-panicked, "are operated on right after birth. he's eight days old now. it's too late. he's going to die. you have to be strong now, so pull yourself together, and come back and say your good-byes."

he called SickKids anyway, and they told him that if he could get asher stable enough for transport, that they would take him and "see if they can try anything."

in toronto, i was drawn a picture of a normal heart.

and then i was drawn a picture of asher's heart.

and there is a lot of stuff missing in asher's heart.

on this day four years ago, the cardiologist in toronto went over our options:

1. 3 open heart surgeries. one right now, one at six months, one at two years.
2. very new (read: partially experimental) but gentle closed heart surgery now, massive open heart surgery at six months, and open heart again at 2 years.
3. transplant. meaning weeks or months on by-pass, and the risk that asher might not live long enough to get the new heart.
4. comfort care. (for those unfamiliar with the term, it's pain management and nothing else.)

that was four years ago.

and right now, as i type this, asher is watching Roly Poly Olie, and drinking juice with his fingers. he sticks his hand into the cup, then sucks (noisily, i might add) the juice off his fingers.

it's been a long four years, to say the least.

i'm hoping we'll have many, many more.

and today is another special anniversary. one of asher's little heart buddies, Yale, is celebrating his heart anniversary today. two years ago, Yale was given his new heart. and believe me when i say, he hasn't looked back!!

so congratulations, yale and family. :) and thank-You, God, for saving and preserving my littlest man's life over the last four years. 

66 years ago today...

on 29 November, 1944, Dr Alfred Blalock, Dr Helen Taussig (yes, a woman) and Vivien Thomas (a black man) performed the first Blalock-Taussig shunt operation at Johns Hopkins in Baltimore.

the shunt was designed to help "blue babies," wee ones with a CHD known as Tetralogy of Fallot. in ToF, there are several issues:

1. pulmonary stenosis. the pulmonary artery carries de-oxygenated (blue) blood from the right side of the heart to the lungs. with PS, the opening to that artery is too small and restricts blood flow to the lungs.
2. VSD, a hole between the two pumping chambers. this allows blue blood to pass over to the left side of the heart and mix with the red blood and travel out to the body.
3. right ventricular hypertrophy. the right ventricle has to work harder than usual to overcompensate for the PS and VSD.
4. overriding aorta. this exacerbates the VSD and allows more blue and red blood to mix and travel to the body.

at this point in history, in 1944, there was no open heart surgery for these babies yet... that would come much later. and actually, up until this day, there was nothing at all that could be done for babies with severely wonky hearts. nothing. this procedure was the first of its kind, anywhere, ever. 

if you're interested in learning more about the surgery, including how to do it, click here. this will take you to a site which will teach you about ToF, and you can do the surgery yourself, in a cyberish kind of way. it's amazing, it really is!

this procedure is not what Asher had. Asher had a modified (or reverse) BT shunt, which went from his MPA (main pulmonary artery, right before it branches off to the lungs) to his proximal innominate artery, allowing most of the blood to by-pass his lungs and go out to his body.

but without this first procedure 66 years ago, Asher would never have survived beyond his diagnosis. there would have been no hope for him at all. and yet...

here he is.

almost 4.

(and for the record, i know of many people with ToF. you can click on Anniek's blog on the sidebar to read her story. and in addition to Anniek, there are two people at my church with tetralogy: a father and son. yes, the father has it, too. i've met him. he's an adult, and if you met him, you'd never know he has a wonky heart. simply amazing. and when you consider that these people would not be here today without this first surgery so very long ago... awesome. just awesome.)

crystal balls, looking back, and the unanswerable questions that break my heart

a friend of mine has a blog about parenting a medically fragile child. her daughter's condition is different than asher's, but our journeys as mothers have often been very similar. and so her post today broke my heart. i'm not going to summarize it here; you can check it out for yourself, if you're interested. but i want to share my reactions to it. and please know, i don't always think about these "unanswerable questions"... in fact, i very rarely do. i know that i don't know the future and i'm ok with that. except today, it would seem. but it's part of the journey, so i'm sharing it.

when a family has a special needs or medically fragile child, suddenly, the entire family dynamic changes. in every imaginable way. we went from "ed, heather and the kids" to "asher and heather... and aren't there some siblings in there, too?" since 10 december, 2006, my life became centered around asher. asher became my identity. even my email addy is "wonkyheartmom" for crying out loud! his wonky heart became my wonky heart.

as for blithe and bram... sigh... (please bear with me in this post. my heart is breaking and i'm in tears, so if there's typos, it's because i can't see them.) it's like there are two sets of children in my life now. there's asher, and there's "the kids." and "the kids" are blithe and bram. yes. they're separate. when asher is in the hospital, or he's in emerg, or he's sick at home, i need help with "the kids." and that never means asher. that means blithe and bram. i mean, think about it: people ask me all the time how asher is doing. occasionally, they'll ask how i'm doing. rare is the person who asks about blithe and bram. and by "rare," i mean, i don't remember the last time someone asked about them. here's just two examples: a book is being written about life with a single ventricle kid, and ours is one of the families being "showcased" (for lack of a better term). the authors wanted to know about asher and his parents. the kids? mostly overlooked (because we did discuss them, but not in depth). and when i was asked to share at church about our journey, they asked about asher and me. again, there was no mention of blithe and bram, other than that i have three kids. i'm not blaming anyone here; it's natural to focus on asher, because his part in this is so obvious and dramatic. but still... i have two other kids whose stories don't get told.

and how have blithe and bram responded to all of this? generally speaking, they deal with all of this wonderfully. a SN/MF mother's dream. they are strong, joyful, resilient, compassionate. they just roll with it. "asher's in the hospital again? hooray! that means we get to spend time with nana!!" but then i wonder... you know... in the bigger picture...

blithe knows way too much about asher's condition. and i don't just mean that she knows about all the defects in his heart and she can tell you about the surgeries and she can find the aorta on a picture of a healthy heart (b/c there isn't one on the picture of asher's heart, and she knows that, too). i mean... she knows. she knows he's fragile. she knows that there is no medical explanation for why he's still here. she knows that he could pass very quickly, with very little warning. as for bram... he was so young when asher was born, to a large extent, this is the only kind of life he has ever known. the instability and unpredictability and stress and chaos and unknowing. up until the other week, he assumed that when he was asher's age, he had all kinds of scars on his torso, too.

and then there's the non-asher factors that go with this life, which are inextricably intertwined with the journey. asher's care is expensive. so um... yeah. i'm usually broke. and the kids know that. we don't get to buy new clothes very often, and when we do, they're not super cool. they're super cheap. we don't get to eat out very often. a full tank of gas is a luxury. the kids are aware of this. they don't get the cool toys that they see advertised on TV. nope, they have to make due with the same broken toys they've had for years, unless their dad buys them something (which is also nothing expensive). i mean, seriously, right now, asher needs a new pair of everyday shoes. and can i buy him a pair? nope. he's just gonna have to make do with these shoes that don't stay on his feet, because i just don't have the money for a new pair. as for groceries... the kids don't get lunchables or special treats, they don't get their favourite cookies. they get homemade cookies. and sandwiches on homemade bread (other than today, because my mother bought a loaf of bread for us on saturday)... i'm not trying to say we're starving or anything; they're fed, don't worry. but my point is this: the kids have to sacrifice a lot.

and it's not just sacrificing material things, either. as joyful and gracious as blithe and bram both are, there are those tell-tale markers of this life: they both struggle a bit with anxiety. granted, some of that is genetic. but it doesn't help that they have very little control or predictability in their lives. i'm working on getting some sort of routine now, but it's hard. we've been without it for so long, i feel like i have no idea how to do that anymore. but even developing a routine now is a huge change for them, and that causes them stress.

the point i'm trying to make is this: having asher in our lives has been very difficult. yes, it's wonderful, he's an amazing boy, and i love him more than i ever imagined i could ever love another person, and he is a gift and a blessing in innumerable ways. don't misunderstand me. but... sometimes...

and i'm just being honest here...

i ask myself, "if i could go back, knowing what i know now, what would i have done?" if i knew the cost to us as a family, if i knew how he would suffer, if i knew how blithe and bram would suffer...

would i change anything?

and again, i'm being honest here.

knowing what i know now, both about the condition/treatments/odds/etc and about the life itself,

i would still have made the same decision.

but i would not have brushed off some of the options quite so quickly. i would have at least entertained the thought for a few minutes, instead of snapping at the cardio. i would still have chosen the hybrid. i honestly would not change a single thing that i have done over the last nearly 4 years. but i would have given more thought to the impact of my decision on the other kids. again, i'm not saying that i would have chosen comfort care. i wouldn't have. it's not mine to decide how long another person lives, so i wouldn't have chosen that. i would still have chosen the hybrid, too, even though a couple complications along the way were directly because of that surgery.

and then there's the other unanswerable questions...

how will this life impact blithe and bram as they grow up? what kind of adults will they become? what kind of parents will they be? or will they even have children at all, too afraid to risk having a child like their brother? will they hate me and resent the life i chose for us? will they hate God for giving us this life? or will they grow up to love God? will they find comfort and refuge in Him and His promises? will they be compassionate toward other people? will they have learned to embrace today instead of fearing tomorrow or regretting yesterday? will they see God and Beauty and Light where others see darkness? or will they be consumed by fear and anxiety and mental illness?

if i'd had a crystal ball back in the day, even before asher came onto the scene, i think i would have made pretty much all the same decisions i've made anyway. and in the meantime, "all" i can do is to do my best, love them unconditionally and completely, and trust that God has plans for them, plans to prosper them and not to harm them, plans to give them hope and a future. it's just...

sometimes it would be nice to know ahead of time...

what a difference a pacemaker makes

saturday marked six months since asher was admitted to london's PCCU with severe bradycardia. when active (read: awake and playing a bit, since he wasn't nearly as energetic as usual), his heart rate was in the low 50s. last night was the half-anniversary of the scariest night in asher's life. his heart rate was sitting at 30, he was hands down the darkest shade of grey i'd ever seen him (only slightly lighter than charcoal - and i'm not exaggerating here at all), he was sweating like a pig so that he soaked through his bedding in just a couple minutes, and his nurse couldn't wake him up. there was a vial of atropine at his bedside and the intensivist was scared out of her mind and actually said, "this kid needs a pacemaker right now. get him out of my unit; i don't want him here." i was terrified that asher wouldn't wake up in the morning.

and it didn't improve much over the next week or so. he didn't get his little battery-pack for over a week, and that whole time, i was disintegrating emotionally. i must have cried every day. now, granted, i made some great friends, and the lunches with D were a very welcome (if surreal) distraction, but every time i looked at asher my heart broke. every. single. time.

and if i'm honest here, i have tears in my eyes as i write this post. it was probably the darkest time in asher's life. sure, the first admission, when he was diagnosed and had his hybrid... that was terrifying, too. but don't discount the beauty of shock and ignorance. when you have no idea what's going on, you don't know just how scared to be. but by now, i have some knowledge on my side. i know what it looks like when a heart is failing and shutting down. and by now, i know asher, and i know what we would have lost if his heart got the better of him.

and now, here we are, six months later. as i type this post, asher is at school, playing with his friends, playing on the computer, singing songs and learning and... well, living. i'll admit, in april, i would have told you that this likely wouldn't happen. and yet... it's happening!!!! asher is alive!!!!

so i want to take this opportunity to thank all of you, our wonderful readers, for all your prayers and thoughts and love. you have given us both so much strength and courage to get through all the horror, and the grace and joy to fully embrace the normalcy. thank-you so much. we couldn't do this without you.

God aka our Refuge

i was asked to share a little bit about the "asher journey" this morning in church. and when i say "a little bit," i mean... i was limited to 4 minutes!!! gah!!!! how to squeeze everything i wanted to say into such a short time?? but i managed... i think... i kind of ignored the clock. anyway, it was an interview, and while you all know the answers to questions 1, 2, and 4 (tell us about your situation; what has your journey involved, and how is asher now?), i want to share my answer to the third question.


what are some practical ways in which you have accessed God as your refuge during your journey?


it's an interesting question; i don't usually think about it so specifically. i just kind of do it without thinking about it quite like that. but i guess i would say that, for starters, as a single mom, i have been gifted with a lot of time alone. so i can spend that time thinking, praying, journaling, reflecting... that time with God allows me to rest, even in the scariest times.

the second thing comes from a rather morbid conversation i had with a dear friend when asher was about six months old. asher was very weak, very sick, and i knew in my gut that he was going to die in the OR. my friend said to me, "yeah, he might die during the surgery. but he might not. you don't know. you have no guarantees with him, but you have no guarantees your other kids will grow up, either. they're fine now, but things can change. you just don't know what will happen." and believe it or not, that conversation, as gut-wrenching as it was, opened my eyes to the reality that i really don't know. i don't know why asher was made this way, i don't know what the purpose is, but God knows, and that's enough for me. i don't see the bigger picture, but God does, and He is in control. that's really comforting, because i know that i don't need to control everything, and i don't need to know the future.

finally, when asher was two months old, he was in the hospital. he was pretty sick, but no one could figure out what was going on. so one night, i asked God to heal asher. you know, the "big H" healing. and as clearly as i hear you today, i heard God say, "no, that's not the miracle I'm going to do here." so i've gotten to spend the last 3.5 years looking for the miracle. and God promises that if we're really looking for Him, we'll find Him. and i do! He's everywhere in this journey. and so, in those times when it's dark and scary and it feels like God has forgotten us - because those moments happen; it's not all sunshine and rainbows - i can look back and see that God was there and there and there and there and there, and that gives me the courage to not look forward - because i can't - but i can look around and look for God in the current situation.

there you have it, folks, for those of you who missed it this morning. it was a great morning; i talked with so many people after the services, including a single mom with three kids (now grown), and a heart family with the father and son with Tetralogy of Fallot. it was a wonderful morning, and i'm very, very grateful for being given the opportunity to share some of this story. thanks for interviewing me, ron, it was a great experience! 

it's how i roll

this morning, i was chatting with a friend, a fellow heart mom (gotta love facebook!), and i got to thinking. this life, you know, it does things to you. weird things. it warps you, in a way.

mind you, i almost titled this post, "quothe the heart mom to the cardiologist, 'do you know the kind of life i had to have to prepare for asher?!'" so maybe it's not heart life that does this. but it definitely reinforces it.

what i'm talking about, dear readers, is my sense of humour.

my warped and very, very, VERY dark sense of humour.

to whit, i give you some of the things i've laughed and joked about over the last 3+ years.

1. when asher was diagnosed, at 8 days old, it was rough. and by "rough," i mean that the next two days in their entirety were spent with docs giving me bad news. all the time. for two whole days. i said to asher's dad over supper on day 2, "ok, i need something to laugh at here. if i can laugh at just one thing, it won't be so horrible." and i started thinking. i'll admit, it took me a couple minutes, and i was starting to lose hope. and then, as i was about to give up, it hit me. "doc said he's going to be blue. well, that makes hallowe'en easy: he'll be grover."
2. leading up to the glenn, asher was very weak and not doing well at all. his sats were in the 60s, his BP was rising daily, he had no energy and was sleeping over 20 hours a day. and he didn't just have the glenn. he was to have the norwood AND the glenn at the same time. two very big surgeries at the same time. and at that point, asher was averaging an admission every month, plus appointments every single day, and countless trips to emerg. i was worn out, exhausted, and quickly running out of hope. i was certain that asher was going to die in the OR. you couldn't tell me otherwise. he was going. to. die. now, i tried to get past that thought. i wanted to believe that he would make it through. so i tried picturing life post-glenn. but every time i did, i could only see 2 kids at home. no asher. so that wasn't working. so i decided that the best i could do would be to imagine asher just surviving the surgery. even if he didn't make it home, at least he'd come out of the OR. i knew what to expect post-op in the unit, so i pictured that. horrible images to cling to, really, but i figured, if he made it through the surgery, he could still die in the unit, but at least i would be there when he passed. and then, one day, while picturing asher with all the tubes and lines and meds and monitors and everything, i realized that his rib cage would probably be suspended post-op. so i added that to my visualization. his chest open, wires wrapped around his ribs and looped over another wire above his crib. (don't know if you've ever seen it or not. it's not quite as gruesome as it sounds.) and then i started laughing. hysterically. i mean, i was almost literally peeing myself from laughing. because, i thought, when people asked me how asher was doing, i could say, "he's hanging in there."
3. during one trip to emerg, i was talking to a med student, and (trying to) teach him about asher's heart. he was having none of it. he insisted that he knew everything, and i knew nothing. he argued with me about what the surgeons have done, and the meds asher's on (i said at one point, "that's fine. you can disagree with me about Lasix and HCT. in fact, why don't you call the doc who switched the meds. his nephrologist. whose other specialty is pharmacology. it's dr f. you know. chief of paediatrics. you can ask him." yeah, i was not impressed with this clerk at all. anyhoo... once i had finished (trying to) teach kid about asher's conditions, he asked, "so, what caused all this?" "nothing," i answered, "HLHS just happens." "no, i mean, were you sick during the pregnancy? what made his heart go like this?" "nothing," i replied through gritted teeth, "HLHS. just. happens." "no, i mean, did you drink? did you do drugs? did you take meds you weren't supposed to?" well, i looked the young man in the eye, and said with a straight face (and without violence, i might add), "actually, somewhere around the 7-month mark, i sneezed too hard and his ventricle fell off."
4. during the spring, i was having lunch with D., dr caldarone's wife. (and no, that's not the surreal part.) these lunches were great; i would tell her about the journey with asher, and she would tell me all about "chris" (dr c) and their lives. anyway, it was during asher's pacemaker admission. D and i are having lunch, and she tells me about their dinner table conversation the night before. dr c was talking about pacemakers (not disclosing any confidential info, don't worry. just talking pacers in general) and one of the kids asked what a pacemaker looks like. so dr c described it, and the oldest said, "i think i had one of those in my desk! but i didn't know what it was, so i threw it out." but wait! that's not the funny part!!! the next day, dr c came in to do the informed consent bit etc. so i said to him, "now, you're sure you have a pacemaker for him, right? no one threw it out or anything?" 
5. another dr c story (i have several). asher went in to the OR at 8am on the morning of the Glenn. dr c came out to the waiting room at 8:40am. (all you heart moms should just read the story before you vomit; it's ok.) he came over to me and sat down. apparently he needed to add something to the consent form but he needed me to witness it so that it was legit. no problem. then he said to me, "ok, well, we haven't started yet." "I HOPE NOT! because you're out here!!!" and he just looked at me like i was crazy for a moment. then when he saw i was laughing, he laughed, too.
6. yet another dr c story. D and i were again having lunch (sometimes i just shake my head at the twists and turns and unexpected acquaintances that come my way in this life). we were discussing the letter i'd written to dr c back in december. i refer at one point to his hobbies (yes, he has some!!!), and she said that he bakes and makes "the best pasta sauce in the world," and "did you know he sews?" "I HOPE SO!!!"
7. back in the day (asher was 4 months old), he was admitted to PCCU in london. dr b came in to see us because he'd heard that we were there and he just wanted to check on asher and see how we were doing. he said at one point, "i'll be back in a little while. just a social call, to see how you're doing, if you need anything." i said to him, "while we're here, the only thing i ever need is coffee" (take note, readers in the area). "i can bring you coffee," he said, "how do you take it?" "two cream," i said. "alright, two cream. no sugar?" "i'm sweet enough," i replied with a smile on my face. "yeah, i'm not gonna touch that one!" he said. yes, folks, i can joke around with cardiologists. 

this is how a lot of us get through. we laugh. you may remember the post from the other day about band-aids. it's how we cope. it's true what they say,

"if you don't laugh, you cry."

and when there's so much to cry about, you learn to laugh at just about anything. it's how we roll.

"false" alarm

asher came home from emerg, so that's a good thing. :)

all the tests came back negative, other than some sugar in his urine. but they checked his blood sugar and that was fine, so we'll have to follow up with paeds in a few days for another urine sample, but other than that, everything was fine.

doc and i suspect we may have just picked up on something while it's still brewing, so we'll all be watching asher very closely over the next few days. this has happened before, that i picked up on something and we were sent home only to be admitted a couple days later with something weird. right now i suspect it might be another UTI or a migraine, but we'll have to wait and see. because really, it could also be nothing. which i would prefer, to be quite honest. it would be so nice if the little man could get a break for a while.

so please hold asher in the Light over the next few days.

and one more note: remember shawna and ethan, my friends from SickKids (in the list of kidlets at the end of the post, this is the second little guy named ethan; his momma shawna is a CHD warrior)? they have a big meeting at SickKids tomorrow. please hold them all in the Light. this will be a difficult meeting, potentially with a lot of tension and disagreement. what they all need is patience, grace, discernment, wisdom, humility, and to remember that they all want what is best for ethan, but that what he needs most is co-ordinated, compassionate and co-operative care. so please pray/cross your crossables/send good vibes/whatever you do for this meeting tomorrow. also, please remember shawna, as she has a lot on her plate right now. she's a strong woman, but some prayers never hurt anyone.

AWESOME!!!!!!!!!

asher went in for his weight check this afternoon. now, remember:

• in June 2008, asher weighed 12.4kg (27.28 lbs)
• in April 2010, asher weighed 12.8 kg (28.26 lbs)
• 3 weeks ago, asher weighed 13.6 kg (29.9 lbs). but, you'll note, he was fighting a cold and therefore retaining a lot of fluid.
• 2 weeks ago, asher weighed 13.0 kg (28.6 lbs), after the fluid had come off.

so this afternoon, asher weighed in at....

drum roll, please....

13.5 kg!!! (29.7 lbs)

that's a 500 g gain!!! that's over a whole pound in 2 weeks!!!!!!!!! how incredible is that, eh???

dare i hope there won't be a tube in his future?

the plan for asher's surgeries

so i got a call from dr russell on wednesday, of course, when i couldn't talk. LOL anyway, we now have the plan for asher.

the plan is to do his surgery(ies) in late february to early march, which is wonderful. for one thing, it gives us a bit more time. i was expecting by "early new year" that would mean mid-january. this gives us quite a bit more breathing space. it also means that asher is stable enough to wait that long. quite a change from a year ago. :)

you'll recall that time a year ago, asher was suffering from CHF after his illness in november, and we were getting brushed off in london. thank-you, dr russell, for listening to me. she's such an awesome doc! :)

ok, i should go for now. two posts in one morning, and it's not easy to type with a sat probe on your finger! LOL ttyl :)

ps - i'll post specific dates when i get them.

an excerpt from my letter to dr caldarone, on the day before the 3rd anniversary of asher's hybrid

Believe it or not, i’m actually at a loss for words now. I mean, really, how do you thank the person who has given you your child back, over and over again? This letter is the most difficult thing i’ve ever written. It might be easier if it weren’t so personal. I could just send you a little note that says, “thanks for everything” and leave it at that. But gah! There’s nothing i could give you, nothing i could do or say that would even come close to the gratitude i feel when i think of you. I should only have two children anymore. Instead, i have three. Still. And yes, i recognize that asher has a lot to do with his survival, and since i believe in God, i believe that He plays a big role in it, too. But really, asher could never have lived without the shunts and bands and plastes and reconstruction and diverted bloodflow. And God knows i don’t ever want to know what goes on in the OR (i’ve seen the inside of a cath lab, and i’ve been in Interventional Radiology, and i’ve pinned asher down for countless IVs, but the OR... shudder!). all i need to know is that, in that room, you give a little person a chance to live. To grow. To play. To imagine. To love. To cuddle. To build. To dream. To smile. To laugh. To run. And jump. And sing. And dance. To hold on to his little green dinosaur and Thomas trains and hot wheels and stuffed animals every minute of the day. To hold my hand. To hug me. to wink at me (a work in progress), and give me the best kissies ever. This child of mine is a miracle.

But so are you. You’re the greatest gift our family has ever received (other than asher himself). I have a couple pictures from his first week, and there’s no scar. It’s just so strange to see. Sometimes, when i’m getting him ready for bed, i see his zipper, and hug him a little tighter... because i can. And sometimes i forget about his zipper. And that is even better. Because it means that asher is a normal kid. Happy, playful, energetic, stubborn, a little spoiled, affectionate. he doesn’t always want to share his toys. Yesterday, a little boy he was playing with, whom he had never met before, was crying. Asher went over to him, put his arm around him, told him “it be ok, it be ok” and hugged him. i wish you could see just how beautiful my son really is. I wish i could bottle a little bit of his light and send it to you, so you could experience it and understand. Because without you, none of this would have ever happened. I wouldn’t hear him upstairs right now, yelling at his brother (sigh). I wouldn’t have put mitts on his hands before we walked his sister to the school bus this morning. I wouldn’t have gotten him a drink of water at midnight when he woke up last night. I wouldn’t have made him grilled cheese the other day for lunch. There would be no birthday parties, no curly blond rat’s nest to comb through (and wow! His hair is CRAZY!). i wouldn’t have fallen asleep with him on Monday afternoon.

So, thank-you.

I don’t really know what else to say, but believe me when i say that i mean it, truly, from the bottom of my heart.

Thank-you.

looking back tonight...

three years ago tonight, asher was dying, although i didn't realize it at the time. one year later, i wrote a letter to his first cardiologist, the one who diagnosed him. i thought i'd share the letter one more time.

dear Dr Pepelassis,

i'm looking back tonight, and i want to share this with you. we've never really talked about it; just kind of survived it and moved on. that's healthy, i suppose. but i'm looking back tonight. anniversaries have that effect....

i thought he was just "waking up." you know, the third baby, you get kind of... i don't know... complacent about newborn stuff. you know what to expect.

he'd been a good sleeper all week, but that night - one year ago tonight - he wouldn't sleep. and he was fussy. also normal, i thought. so i tried nursing him, to help him settle. he vomitted everything back up. and then he started crying. so i tried nursing him again. again, vomit. so i thought he must have some gas. no burps. i figured he just didn't want to nurse right then; i'd wait till he wanted it. i walked with him for about an hour or so.

but i was tired. a week post-partum​, with 2 other kids. the 2 year-old still was not sleeping through the night, and both of them (4 yrs and 2 yrs) still nursing (that's right - i tandem nursed 3 kids). i was so tired. my mother offered to walk with Asher for a while so i could rest. then an hour later, we traded. we did that most of the night, until, as our absolute last resort, we bundled him back up and put him in bed with me.

i worried a bit about the extra blankets for him. see, all evening and right up till morning, he would sweat. our house is old, so it's a bit drafty. so i had him bundled, covered with a couple extra blankets, and of course a hat. but then he'd get hot, so i'd unwrap him, let him cool off a bit. but then he'd get cold. so i'd bundle him again. then unwrap him because he was sweating. all night that went on. but it was winter and our house is drafty. (it wasn't too bad, though. but we were trying to account for the cold and sweats, and that's what we came up with. it just never occured to us that anything was wrong...)

wh​en i woke up, just before 6am, Asher was in bed lying beside me, but he wasn't crying anymore. but he was breathing fast and grunty. and his face... i'll never forget his face. he was looking into my eyes. he looked scared. he looked desperate. "mommy, help me!"

i took him to emerg around 6am. they rushed us in. that scared me (STEGH has a bit of a reputation). the nurse ran out of the room, dragging others in to help. and doctors! at one point, there were 3 doctors, one IV guy, 6 nurses and me, all freaking out over my baby. (well, i don't know how much i was freaking, to be honest. i think i was in shock. a gift from God, shock is, let me tell you!). i remember the doc came over to me and said, "we have to send him to London. they can help him there." i said, "but he just needs oxygen, and then he'll be fine." "no, this is bad." "it's just a little murmur," i said, "just give him some oxygen and he'll be fine!" he said, "oxygen can't fix this." i said, "yes it can! he just has a little murmur, he'll be fine, he just needs oxygen." "this is not a murmur. oxygen can't fix this. we have to send him to London right now."

i drove myself. not the best idea. i know that now. but there was no room for me in the ambulance, and there was no one i could think of to drive me. i cried at every stop, because it was delaying me, and i needed to get to London. i truly believed that they would "fix" Asher there. as i got over the 401, and the ambulance flew past me, i bawled and yelled at other drivers to get out of the way. i had no idea what was wrong with Asher, but i knew we were racing against the clock.

Asher was already curtained off and surrounded by nurses by the time i got to emerg. the doctor was nice, though i don't remember her name (was it Dr G? she always looks familiar, but again, shock. it's wonderful, in a horrifying kind of way.)

i don't remember when you got there. i know at one point i wondered why you would be looking at his heart. i still had no clue what was going on. i don't remember when you introduced yourself, though i'm sure you did (in fact, i never did catch your name that day. Paula told me when Asher was up in step-down.) i don't remember if you told me about Asher's condition or what it was called. but i will never forget what you said to me next: "usually babies with this condition are operated on right after birth. he's 8 days old now. it's too late. he's going to die."

is that when i burst into tears? or was i already crying? i don't remember. but i do remember how i felt at that moment. all i felt was the most venemous hatred i have ever known. never before (or since) had i despised someone so thoroughly or passionatel​y as i hated you at that moment. and yet you kept talking! something about calming down in that little room (you know the one i mean. yeah. i hate that room) and then coming back out to say my good-byes. i remember wishing someone would drag you away, why were you still talking to me i hate this man someone make him stop talking to me someone make him go away i hate him! that's all i could think. (don't worry. i changed my mind about you pretty soon. just keep reading.)

i don't remember much until you came to talk to me some time later (still no concept of time; still shock). you said, "i just talked to the guy in Toronto, and it may not be too late. they're going to try. but your son needs surgeries. 3 surgeries over the next 2 years. i'm so sorry that it's 3 surgeries, i wish it could just be one." there you were apologizing that Asher would need 3 surgeries in 2 years, and all i could think was "you just told me my baby was going to die! i will take the 3 surgeries, thank-you very much!" if i hadn't been weeping (for joy this time), i would have hugged you. i have never loved a complete stranger (or even most people i know, for that matter) so intensely or joyfully as i loved you at that moment. (see, i told you i changed my mind).

the rest of the day was a blur (again, thank the good Lord for shock!). i remember bits here and there. i remember our pastors coming to see us. i remember Dr A coming in dressed very casually (plaid shirt, jeans, what looked like workboots) and putting a line in Asher's belly button because they had run out of places for IVs. so many lines - wires, tubes, catheter... Asher was more technology than baby. horrifying.​

but mostly, as i look back, i remember you. i watched you very closely that day. for one thing, you were the man who was saving my baby's life, so i had a vested interest in everything you did. but also, you are delightfull​y (and horrifyingl​y) expressive. so many doctors that i've met over the last year aren't. but you... because of you, i had hope. yes, i was still more terrified than i have ever been, before or since. but you gave me hope.

once, i walked in while you were echo-ing Asher and i heard you say, "oh, thank-you, God!" i cried.

at another point, i mentioned our family doctor. you said, "Tracy O? she's our doctor, too. she's really good." (if a doctor can make chit-chat while he's working, things aren't so bad. at least a mom can breathe, if only for that moment.)

ano​ther doctor was checking on Asher and you were joking around with him and laughing. i have no idea who the other doctor was or what you were talking about. i just remember your laughter.

as​her and i (and the rest of our family) have been through a lot over the last year. we've met a lot of cardiologis​ts (most of whom i like) and other specialists. but, in all honesty, you are far and away the best and my favourite doctor i've met thus far. if it weren't for you, Asher would have never made it past 8 days. and so, i can honestly and sincerely say that i love you from the bottom of my heart. i don't know if you believe in God, but i do, and i thank Him often for you, for the amazing mind and heart He gave you, and for the gracious gift of you that He gave to all of us, and especially to Asher. you are a wonderful doctor and a wonderful human being, and you are an absolute blessing to your patients and their families. i simply cannot say enough good things about you (which says something, because i talk a lot!) and i rave about you every chance i get.

sure, dr caldarone and dr buffo also hold special places in my heart, and they, too, will get letters in turn as our anniversari​es with them roll around. i am also deeply grateful for them and to them. but you... you are the most wonderful blessing to our family. without you and your determinati​on and skill one year ago, i would have lost my little baby. i would never have gotten to see his beautiful smile, hear his delightful laugh, hold him as he sleeps, cuddle him close, watch him play with his brother and sister, or enjoy him as he grows.

i know Asher isn't "out of the woods" yet, and he may never be. but i know that he's in good hands as long as you're his doctor.

than​k-you, dr p, for everything you have done and continue to do for Asher. you truly are a gift from God.

sincere​ly,
heather

(if you click the title of this post, it will take you to asher's first blog, with the first 15 months of his story.)