Sunday, February 28, 2010


wow, i don't really know what to write here today. i don't really know exactly how i'm feeling right now. tired? hungry? scared? lonely? freaxious? i don't know...

it's two days till asher's surgery. and i want to cry, but i don't think i'm scared or anything. and i don't feel particularly stressed. although i am fully aware that on tuesday, i will hand asher over to the OR staff, and i will be sitting down the hall while they do disgusting things to my baby's heart. and i will be hoping and praying that at the end of it, the surgeon will take me out into the hall and tell me that my baby is still alive. maybe right now i feel an awareness that this time wednesday i may not have a baby anymore. that might be it. and living in that awareness, i want to just hold asher close and not let him go and just hold him. hold him close to my heart and hope he knows how much i love him. because he will be going into the OR without me. i can't protect him while he's in there. i just have to walk away while he works to stay alive even when they stop his heart... while they turn on the bypass machine and inject his heart with poison and stop it so they can do what they need to do.

maybe it's harder for me this time because he's so healthy and strong right now. every other time that he has had surgery, he's been so weak, so sick. he needed surgery. it's hard for me to look at him today and know in my heart that he needs this.

and yet i do know in my heart that he needs this. sure, he is strong right now, but how long could that last without the surgery? i don't know. i have no idea. so if we do this now, he has a better chance of pulling through quicker and more easily. i've told him that he can and should take all the time he needs to recover from this. but it's hard, you know... i know a few kids who were home in a matter of days. but i know of one little boy who came home five months later with a new heart. that's hard to plan for, that whole, "how long are we going to be gone" question...

what is even harder is knowing that i can't plan. and i probably shouldn't plan. i should trust. just trust. trust God, trust Asher, trust Dr Caldarone, trust the docs and nurses and therapists... but he's my baby!! shouldn't i have a say in this? shouldn't i be able to control something, anything?? and yet i can't. i have no say. i have to let go of my baby an entrust him to other people. and let go of my baby and trust him and his strength and will to live. because he does want to live. you can tell just by looking at him. this boy of mine lives. and frankly, it would be really nice if that continues...

i've been struggling a lot this week with trust and control. i keep wanting to trust, and i do manage to let go of my need to control. but then i find myself trying to control it all again. i just... i don't know. i know i can't control any of this anyway, so shouldn't i just stop trying and trust that in the end, everything will be ok? it sounds so easy, doesn't it? trust. that's it, just trust. a cardiologist told me once, "don't try to control what isn't in your hands to control. one way or another, he has always found his way." and i remember what i shared at the EMMCO women's conference, that patience in prayer is just God asking if we trust Him, and then He waits patiently for us to say "yes." it just all sounds so easy. so why isn't it?

i want to trust that Asher will be ok. actually, no. that would be hope, not trust, and i've got that. i want to let go and be able to deal with whatever happens. i want to have peace with whatever happens, however heartbreaking it may be. i don't have to like it. it really is out of my hands right now. actually, it has always been out of my hands.

i don't know... this is hard for me. it's easy at times. it's easy to let go of it. it's harder to not take it back. and that's what i'm struggling with this week. the continuous letting go. i let go of one thing four times yesterday alone. and that was nothing compared to what i'm facing with asher...


and what's funny is that right now, as i'm sitting here typing and watching the kids play together, i just hear those wise words... breathe in Jesus, breathe out the crap.

easier said than done? maybe. but i'm working on it. one of these days i'll get the hang of it... i hope.

Thursday, February 25, 2010

prayer for asher

on sunday, 28 february (that's this coming sunday, for those calendar-challenged types among us), we will be gathering for prayer for asher after the last service. the service begins at 11:15, so we'll be gathering around 12:15 (give or take, but they've got the timing of these services pretty much down to a science). we're getting together at the front of the main auditorium.

the church we attend (the kids and i) is Forest City Community Church in London. it's on Bostwick Road, and it's a very big church. really, you can't miss it.

i hope you can join us. this is our last sunday there before we head to toronto for asher's surgery. and you know what they say: "where two or three are gathered..."

Monday, February 22, 2010

lessons learned on pre-op day

1. if you pull out of your driveway in st thomas at 4:48am, you will pull into your beautiful parking spot near the elevators on P1 at SickKids in toronto at 6:58am. and you will be half an hour early for bloodwork.

2. if you pull into the drive-thru at timmy's at 4:53am, you are too early for a breakfast sandwich, so you have to get a bagel with cream cheese instead. ah, well, it served its purpose.

3. shoppers drug mart at sick kids does not, in fact, open at 7am.

4. asher is a little too well-known at sick kids. the clinic nurse today actually said to me, "i don't really need to teach you anything, do i? you've been through this all so many times before. if they gave out frequent flyer points here, you'd have tons!" yeah.

5. i look fantasic. LOL i saw the research nurse who followed asher during the last few months of the enalapril study back in the day. last time she saw me, i was fat, crazy/depressed, my hair was longer and blond, and now i'm none of the above. LOL

6. i heart medical research. yes, i signed asher up for two more studies, to be done in the OR prior to bypass and in the two days following surgery.

7. the surgical fellow has a great sense of humour. he liked my idea of sending asher to live with the surgeon for a week and then decide if the fontan is a good idea. more oxygen = more energy. nuff said.

8. i could have done the informed consent bit myself. stroke, heart attack, death, bleeding, chylothorax, etc... yup, i knew them all, including what causes them, and what to do about them.

9. legally, the surgical fellow has to go through the informed consent bit with me.

10. asher doesn't smoke, nor is he pregnant, but he does have heart disease. (if you've filled out the questionnaire for anaesthesia, you're laughing, i know.)

11. when the surgeon says that he'll be there at 11:30, he really means that he'll have to be paged at 4:15.

12. being low on T-cells is not the same as being immunodeficient or immunocompromised, but still needs to be treated as though it is the same. because if you're T-cell deficient, you need irradiated blood products. but if you're just low on T-cells, you're not T-cell deficient, but you still need irradiated blood products, and a follow-up with immunology. even though you're not immunodeficient, just lacking some T-cells. WHAT?!?!?!?!?!?!?!

13. i don't understand immunology. (ok, so this wasn't a new lesson i learned today, but it was most definitely reinforced for me today. CAN ANYONE EXPLAIN IMMUNO TO ME?!?!?!?!?!?!?!?! GAH!!!!!!!!!!!)

14. nothing beats a 9 cent venti chai latte. except, perhaps, an 8 cent venti chai latte.

15. and especially except a lunch of carbs, gravy, salt, deep-fried trans-fats, and hot dogs. mmm... lunch....

16. asher has more energy than anyone i know.

17. the surgeon is not keen on taking asher for a week. hmm, wonder why???

18. the word "routine" can be used to describe asher's heart stuff!!!!! can you believe it?!?! "this should just be a routine fontan." i have tears in my eyes just remembering dr c saying that.

19. asher, the ham, who lives to perform... will not perform on cue. he's been looking forward for days to telling dr c that "i not hab tube anymore" and when dr c walked in the room, asher did his "hmph" and wouldn't look at him. but he did pick his nose. asher, that is, not dr c.

20. that when you're sitting in clinic, 8 days before the final stage... nothing else matters. the realization that this is actually happening is heartbreaking, terrifying, thrilling, nauseating, and leaves you not knowing whether you want to cry or vomit. or maybe both. so who cares about all those stupid, meaningless, non-fontan questions you have. they don't matter. what matters is that in one week, you're handing over your baby to someone you've only met a handful of times, and he's going to do disgusting things to the only non-redundant organ in your baby's body, with no room for error. and you're going to sit down the hall all day and wait for the surgeon to come back early, but praying to God he takes all day. and that now, even more than ever before, the clock is ticking, time is running out... and all you want to do is hold your baby and watch him and cherish every breath and memorize everything, learn every freckle and ticklish spot, and beg God that you never forget, just in case...........

21. if you pay for parking at 4:48pm, you will turn onto the street 5 minutes later. and you will arrive in hamilton at 8:31pm.

yeah. long day. ugh.

but thanks for being there, diane. you helped more than you know. :)

Sunday, February 21, 2010

ok, i know this is obvious, but...........

it just hit me that this is it.

the fontan.

the surgery we've been waiting for for over three years. this is it. after this, he's done. well, done with this course of surgeries, anyway.

after that...

i don't have to wait for the axe to drop, so to speak, er, write. that's it. the fontan.


and believe it or not, i'm excited about this. yes, freaxious (fear + dread + anxious + nauseous, for those new to the blog), but excited! asher will officially be a fontan!!!! not a glenn!!! A FONTAN!!!!!!!

i'm glad this is hitting me now, right before pre-op. takes the edge off, a bit, you know?

gah! it's too close! it's too close!!!!

just a quick "fyi" post today, folks.

tomorrow is pre-op clinic. asher and i have to arrive at 7:30 am (apparently there's a 7:30 in the morning now... who knew?!?!) for bloodwork. then it's a day of chest x-ray, ultrasound (on his right femoral vein, checking for clots), and meeting with the nurse, surgery nurse practitioner, anaesthesiologist, surgical fellow, and surgeon. wow, i just about threw up, there.

a week from tuesday... 9 days from now... is surgery day. the fontan. excuse me while i vomit. k, back. yeah, surgery in just over a week.

it's strange. i'm not nearly as worried about this surgery as i was about the coles, and since i'm not mourning, i'm not in the same head-space as before the glenn. but... i don't know... i was talking to someone at church this morning, and she asked how i can hand asher over to the surgeons, knowing what they're going to do. my answer? "i don't know." because i don't. she looked heartbroken just thinking about it, and yeah, it is heartbreaking. (no pun intended.) i don't know how i do it. i just do what i have to do to keep asher alive, i guess. blech.

heart parenting isn't easy, folks. it's hard. brutal, in fact. stressful, dehumanizing, crazy-making, frustrating, heartbreaking... an emotional roller coaster on a good day! on the other hand, like i wrote to dr caldarone, there are i times i forget that asher even has a zipper, and those are the best moments, because it means he's a normal kid. let me tell you, i live for those moments.

well, i said this would be a quick post, and before this gets too long, i'm gonna sign off. i'll post tuesday and let you know how clinic went.

Friday, February 19, 2010

yup, it's time for the fontan...

so, yeah, asher hasn't been doing so well lately. all week, actually. he's not sick or anything... unless you count heart disease, in which case, he's one sick little boy.

i took him to see the paediatrician yesterday. all week, asher has been blue, lethargic (on wednesday, he fell asleep on the couch at 5pm and slept straight through till morning... in his bed, though), irritable, not eating as much, sweating in his sleep, puffier than usual, and his hands and feet are cold. actually, i think he's cold all over lately; he never wants to take his coat off anymore. so i took him in, and when she assessed him, she found that he's not tachypnic (breathing fast) or tachycardic (rapid heart rate), but his liver is low. and she knows, because she checked it last week when i took him in. so it has definitely lowered.

(who cares about his liver, you ask? when the liver descends, it is an indication of heart failure. the heart swells from working too hard and the influx of blood to help increase function, and this requires more room. so the liver gets pushed out of the way. it's not as low as it has been in the past, mind you, but it's working its way down, enough to be concerning.)

so, basically, the fontan is coming just in time. please pray/cross all crossables/send good vibes/whatever you do that asher remains otherwise healthy, since clearly this surgery is needed right now. if he gets sick, they will have to cancel, and that will be bad.

and it's 11 days till the fontan. click on the title of this post and scroll down till you see "The third stage of the Norwood: the Fontan operation." that tells you what you need to know, if you're curious about what is involved.

Wednesday, February 17, 2010

yet another specialty for me to learn about... (because we all know i will!)

when asher was first diagnosed, his glucose was waaaaaaaaay off. i figured (as did the STEGH docs) that it was due to dehydration (from vomiting and refusing to nurse all night). but now this has me thinking... and digging through my medical dictionary... and wondering if i can call the doc i know who specializes in paeds diabetes (and immuno. yeah, same doc, lotsa specialties. my kind of doc! lol). i'm thinking i need to learn more now...

if you have any books on endocrine stuff that i could borrow while in toronto, please let me know. i'm not joking (though i am laughing at myself as i type this).

Monday, February 15, 2010

oh, this feels good!!!

i just had to post about this right now. i'm about to edit asher's story on the sidebar. and remove a couple details. in the first paragraph. go ahead, look. by the time you read this, you'll see that asher has issues with his heart, kidneys and immune system. gone will be the reference to throat and GI problems and a feeding tube.


i know my friend wendy does. her son chris is also (relatively) tube-free. eating by mouth for the first time in two and a half years! GO CHRIS GO!!!!!

and the countdown continues... surgery is two weeks from tomorrow... 15 days. i don't know if i want to smile, cry or vomit. maybe some bizarre combination of the three. but right now asher is strong and healthy. the cold he's been fighting for over 2 weeks is almost gone, and he's doing well. this is the first time he's ever gone into a surgery strong and healthy. this doesn't happen!!! :)

please pray for him that he stays healthy, and that i can get everything taken care of and organized before we go. the next couple weeks are going to be pretty busy and hectic, so if you don't hear from me, assume we're doing well. and don't feel dissed if i don't contact you or hang out in the next little bit. sooooo much to do, and sooooooooo little time to do it all in. but yeah, 15 days. yikes!!!!

Friday, February 5, 2010

toooooo cute!!

forget that this morning, after dropping the older kidlets off at school, asher and i got donuts. forget that asher is wearing shorts today (fyi, they're longer shorts, and he picked them out himself, and i didn't have time to find him actual pants before we ran out the door - late - to take the kids to school). forget that asher has two soothers that have mysteriously gone missing.

because i must be doing something right here.

so this morning, after delivering the heartbreaking news to asher that in fact, cannot find either of his soothers, i said, "know who loves you?"

his answer, "YOU!!!... and Jesus!!!"

then he rambled off a million other people who love him, too.


Wednesday, February 3, 2010

because i like to keep you in the loop...

i talked to the HSC surgical co-ordinator this afternoon, and she told me that asher's pre-op clinic will be on Monday, February 22. this will involve talking with the surgery nurse, surgery NP, surgery fellow, anaesthetist, and surgeon.

asher will also have to go for bloodwork, chest x-ray, and an ultrasound on his femoral veins and arteries, to check for clots. if they find clots, they'll have to deal with that immediately, because you can't have clots before open heart surgery. that would be bad.

he will not be having an echo (heart ultrasound) because he had one in november and it looked good.

in the meantime, before pre-op, asher will need to go to the dentist to make sure his teeth are ok. again, if he needs fillings or anything taken care of, that will have to be dealt with before the surgery.

so there you have it. it's getting close now. that means the surgery is really happening. i'll admit, it almost seemed like a dream, or something way off in the distant future. nope. it's really happening. asher will really be having this surgery. soon. less than a month. is anyone else freaxious right now, or is it just me?

why asher's awesome

ok, so i admit, i feel a touch guilty about yesterday's "my child is evil" post. lol so i'm going to now present you with 6 reason why asher is the coolest kid i know. and he's going to help.

exhibit #1
totally affectionate. right at this very moment, he's cradling one of blithe's baby dolls and is singing to her and giving her his sucky. and this morning, when the boys woke up, he rolled over and gave bram a big hug.

exhibit #2
he's musical. you already read about his drumming. he loves that. but he also sings. in fact, since he was just a baby, he could carry a tune. in key. the right key. for the whole song. he's still like that. in fact, he'll hear a song once, and be able to sing it almost perfectly. earlier this week, i wrote on FB that i was hanging out on the couch with asher, who was singing "Yellow Submarine." now, i don't actually remember the last time we listened to that particular song in this house (blithe's on an "abbey road" kick. the girl's got taste, what can i say?), but he remembered the song! he had the tune perfectly. rhythm, pitch, key, he even knew some of the words (he had a mouthful of food at the time, too). but man! this kid can sing!!!

exhibit #3
he's playful and imaginative. he just loves to invent games. one of his favourite things is to throw a blanket over himself and say "mooooooo" and then throw the blanket off and say, "it's ME!!!" ok, so he doesn't know the difference between a cow and a ghost, granted. but if you pretend to be scared of the cow-ghost, he laughs that big belly laugh of his and repeats this little game until he gets distracted by his tank engines or something.

exhibit #4
he loves books. nuff said.

exhibit #5
he loves to help. this morning i was getting him his cereal, and he went into the fridge and got out the milk. and after i came in with charlie (charlie can't pee alone, apparently - why is everyone in this house so high maintenance?! when ASHER is the easy one, there's a problem! LOL) asher ran out of the bathroom and said, "mommy, i put all the toys in the tub. come see!" now granted, no one was going to have a bath. i had forgotten to drain the tub after blithe's bath this morning. but still, he wanted to help someone - don't know who, exactly - have a fun time in the bath.

exhibit #6
toughest kid i know. and i'm not talking heart stuff. this is a "normal kid" post. nope, he is seriously the toughest kid i know. one day, about a year ago (you'll note, when he was sick), he was running through the house at full speed. he was laughing and not watching where he was going, so he ran straight into the dining room table, smashing his forehead on the edge. now, blithe would never have done this, because she's just not a runner like that. and bram, well, he would have collapsed onto the floor in a total melt-down, which you would no doubt have heard, wherever you are. sigh. asher? he jumped back, glared at the table... and kept right on running.

there you go. just some of the reasons he's awesome. i love this kid of mine.

oh, wait, a bonus one.

exhibit #7
he's smart smart smart. he knows where his heart is. he knows all his colours. he can count to ten. he knows how to use a stethoscope and a sat probe. (i know i said no heart stuff, but really, he knows this stuff!) 

and finally, 3 weeks and 6 days till the fontan.

Tuesday, February 2, 2010

oh. dear. me.

whatever happened to my sweet little boy, who was all cuddles and kisses and giggles? someone has taken him away, and replaced him with a hellian. sigh.

exhibit #1
he is now obsessed with drumming. on everything. the table. the floor. the couch. the dog. his siblings. the wall. the oven. his plate. his bowl. (and note: these two are WHILE THERE'S FOOD ON THEM!!!!) to give you an example, this morning i was changing his diaper, and singing him a lovely little song. ice cream by sarah maclachlan. cute ditty. anyway, i'm singing away, trying to get his wiggly legs into the leg holes, and i notice... he's drumming. keeping a perfect beat, doing creative little fills between lines - and keeping the beat at the same time, even! and what was he using as his drum, you ask? his bum. yeah. funny, granted, but still, HE DOESN'T STOP!!!!!!

exhibit #2
when blithe was wee, she got a little finding nemo riding car thing for her birthday. then it was handed down to bram. and now it's asher's. and asher loves it. i mean, LOVES it. he plays with it all the time. his favourite game is pushing the car around the house... chasing charlie. needless to say, charlie freaks out, running away from asher, fleeing for his life. you can almost smell the panic coming off my poor little doggie. asher, meanwhile, is killing himself laughing. to him, this is the funniest thing EVER! he only stops when charlie runs upstairs, which granted, takes longer than you'd think. charlie's absolutely adorable... and dumb as dirt.

exhibit #3
neither of my older children was a thrower. well, no, i lie. blithe used to throw her food on the floor when she was done eating. it was her little signal. lovely. and bram did the same thing. that's it. that's the extent of throwing in our house. until now. why, just 10 minutes ago, asher was throwing his cars and trains (all metal and heavy, mind you) across the living room. isn't that just special.

exhibit #4
this afternoon, i had to take care of some business at our MP's office. on the counter was a box full of chocolate bars to raise money for some charity. bram asked for one. i said no. so he went and sat down and read the book he had brought in with him. then asher spied the chocolate bars. he asked for one, very politely, mind you. i have to give credit where credit is due, and he does have very good manners. most of the time. anyway, asher asked for a chocolate bar, and i said no. now, forget everything i just said about his manners. because he flipped out. and i mean, he stood in the middle of the office and was sobbing. we're talking, weeping and wailing and gnashing of teeth. tears flowing like niagara falls. unbelievable.

exhibit #5
right now he's stomping through the downstairs insisting that everyone follow him in some sort of military parade celebrating wonky hearts?? i don't know.

exhibit #6
last night at bedtime, asher made one little joke. not even a funny one. not up to his usual standards anyway. well, the other two, being very tired, thought this was the most hilarious thing EVER and were nearly falling off the bed laughing. i'm not even exaggerating. so, of course, asher kept it up. kept repeating whatever it was over and over and over and over and over and over and over and over and over... yeah.

by the way... asher's surgery is 4 weeks today. not that i'm counting or anything.