surrendering is NOT the same as giving up.

oh, my sweet, sweet little asher...

by now you probably know that, if he's not already failing, he's at least "flirting" with it.

and as you can probably imagine, i hate it.

i love my littlest man. but just last month i was reminded of something:

kids with HLHS have a 70% chance of surviving to 5 years.

and asher is already 4.

now, i know, statistics are not a death sentence. i know. i really do. but...

asher's HLHS is pretty much as bad as it gets. and he "should" be dead 15 times by now.

the other day, when we went to see our amazing dr b, i already knew what she was going to say. i was hoping for an ear infection or bronchitis or a nasty cold or something, but i knew. i memorized that list of symptoms when asher was four weeks old. i know what to look for, and i knew what i was looking at.

i also know about the possible ischemia, i'm watching and waiting for a heart attack, i'm pretty sure his pacemaker isn't working properly.

but the moment dr b uttered the words "congestive heart failure," it was as if someone kicked me in the stomach. i wanted to vomit. i wanted to cry. and i was just. so. tired.

call me crazy, but i don't want my precious little man to die. i don't. and i can guarantee that anyone who has met him feels the same way. he's just too amazing, too sweet, too funny, too loving, too.... asher-ish for that. i want him to grow up and grow old and have a dozen healthy kids and a hundred grandkids and a thousand great-grandkids.

but that 30% haunts me...

and yet, i know that God specifically designed asher's heart this way. i don't know why, but i know that He did.

so how do i reconcile this mother-love/fierce determination to see my child grow up, with God's will?

um... i don't know.

quite a while back, i was in a small group. and we were talking about surrender. namely, surrendering our baggage to God. here is what i said:

my son has half a heart. he's been through too many surgeries, too many infections, too many hospital admissions. he has too many doctors. and yet, i know that this is God's plan for him. and so, because of that, i have surrendered asher to Him. whatever He chooses to do, whether it's to heal asher completely, whether it's to take him from me, whether it's to keep him here and not take away this illness, i have accepted and will continue to accept that that is God's will. but in the meantime, even while i wait to find out what God has planned, i have to deal with all of this. i have to take asher to appointments. i have to watch for symptoms. i have to sign consent forms. i have to sit with him in ICU. i have to feed him according to his special dietary needs. i have to deal with his condition now, even though i've handed him over to God.

and that's that, i guess. i've surrendered asher to his Maker. thankfully, his Maker has decided that asher will stick around, though for how long is anyone's guess. but i still have to deal with all this crap.

i read something interesting today:

faith isn't necessary when we know the outcome. faith is what gets us through the uncertainty.

yes, i'm exhausted. yes, i am completely sick and tired of heart stuff. yes, i hate it.

no, i don't know how long he'll be here. no, i don't know if he'll ever get a new heart. no, i don't know what's going on in that wonky little heart of his. no, i don't know if he'll pull through this latest bout of failure-ish. no, i don't know how bad it will get, or if the few doses of HCT will do the trick.

i just. don't. know.

and i hate that.

but.

when i stop, and i mean

when i stop

and listen

and look

God is there, doing something. i don't know what He's doing, but He's in there.

and i'm ok with that.

(ish.)

but i accept that God sees the big picture and i don't and He knows what's best and i don't and He loves asher waaaaay more than even i ever could.

if He chooses to take asher at some point, i'll hate it. but i'll accept it. i'll weep and sleep and grieve and mourn and stare off into space because that's the only thing i'll be capable of doing (can you tell i've mourned him a few times already, that i'd have an idea of what i'll be like?)...

being asher's mother isn't easy. being asher isn't easy. but you know what?

every night, when asher says his prayers, he asks God to "make me feel much better." how does this 4-year old know to ask God to do that? how does he know that God can do that? and how does he not stop asking for relief despite the fact that it doesn't come and he still has chest pain every day and he still gets tired and short of breath and overloaded with fluid and he still can't keep up with blithe and bram?

somewhere along the way, asher has learned to trust God.

and somewhere along the way, asher has learned to wait patiently for God.

and it still hurts and he's still scared and he's still going for therapy on tuesday and he's still sick...

and he's still trusting God and waiting for God and looking to God for what he can't do himself.

i'll admit, sometimes i get caught up in the horror of HLHS and CHF. sometimes i mourn my child who is still here but may not be for much longer. sometimes i just hold my breath waiting for God to do something, anything.

but most of the time, i just continue to watch for symptoms and take him to the docs and give him his meds and feed him fatty foods and keep on keepin' on...

and i wait for God.

and you know what they say about waiting for God:

But those who trust in the Lord will find new strength. they will soar high on wings like eagles. they will run and not grow weary. they will walk and not faint.  (isaiah 40:31)

last night i just wanted to cry when i thought about this latest bout of failure. and i almost cried when i told my friend about it this morning at church. but i also know that God is in control. God has a plan. and God hasn't forgotten about us. so we're just waiting for Him.

and tonight, sure, i still want to cry and vomit when i think about it all. but i'm not so tired. and i remembered to pack his meds tonight when he went to his dad's. and i'm going to make an appointment for him to see paeds again, and i'm going to take him for play therapy on tuesday. we're going to keep going, because we're waiting for God and trusting God, and that gives us the strength we need to get through today. today we ran and didn't grow weary. tomorrow we may walk and not faint. our pace isn't the fastest and we don't actually know where we're going, but we'll just keep on going.

and for today, that's enough.

oops, my bad...

i realized this morning that i forgot a couple details last night.

first of all, asher's weight. last week, asher weighed 15.2 kg (approx 33 lbs). yesterday, he weighed in at 16.9 kg (approx 37 lbs). that's right, in about 10 days, asher gained about 10% of his body weight.

sounds like a growth spurt...

until you remember that his legs were puffy...

and by that i mean, dr b was poking dents in his shins. go ahead, try that on yourself. i'm willing to bet you can't do it.

that's because you don't have edema. puffiness. fluid retention.

caused by congestive heart failure.

i'm really tired of all this. i really am.

nothing good comes from a 4 year old flirt

especially when that 4 year old flirt is asher.

and he's not flirting with anything good.

so, we saw paeds this afternoon. asher has been puffy and pale for the last few days, and pretty short of breath. as in, well nigh gasping for air after walking across a room. nice.

now, the other week i took asher in to see our amazing dr b when asher was puffy. his ear was pink, and his lungs were wet, and his liver was down and actually lower than it's been in a very long time. she called cardio, who said, "as long as he's doing well with his feeds he should be ok." ("feeds"?? is asher a baby???)

this week, asher's liver is still down, his heart rate is 100 (dead-on, as usual... sound paced to anyone else?), tachypnic (breathing fast, like 50 breaths per minute), his liver is still just as far down. he's puffy, pale, tired, not eating much, not peeing as much, sweaty and warm (not feverish), a bit irritable, short of breath, etc etc etc....

oh, yeah. and his legs are puffy.

which they never are.

ever.

ever.

amazing dr b says, "well, asher's definitely flirting with CHF. i'm going to suggest you go to hamilton and spend the weekend at your parents'. that way, if he needs to be seen, you're closer to SickKids emerg."

but, before we left, she decided to call london cardio.

but she called and spoke with the cardio on call. for the record, it's the same doc who has said, "oh yeah, these symptoms (of severe CHF) are normal for this stage," "as long as he's tolerating his feeds, he's fine," and "are you sure he's hypoplastic left?" so you can imagine what i expected.

but what he said was...

wait for it...

"give him some lasix and see how he is on monday."

wha---?!?!?!

this doc, famous for brushing off everything, took this seriously and prescribed a med to deal with it.

oh, wait. some of you might not know what lasix is. it's a diurretic. it's job is to make the patient pee a lot, thereby removing excess fluid from the body. in CHF, the heart doesn't function well enough, so blood doesn't move through the body properly, and fluid leaches out of the blood and accumulates in the tissue, usually around the eyes, fingers/hands, and feet/ankles. this also increases blood pressure, and will cause the heart's function to decrease proportional to the amount of fluid build-up. it's a vicious circle, and lasix (and other diurretics) are designed to stop the cycle. ideally, it stops CHF in its tracks.

sounds good, you say?? well, yes... generally... which is to say, the idea is good, but the proposed med is a no-go for asher. you see, asher has nephrocalcinosis. this means that there is a build-up of calcium in the kidneys, which impairs renal function, which increases blood pressure, decreases heart function, which impairs renal function, which increases blood pressure... yup, another vicious circle. and lasix... causes calcium to build up in the kidneys.

delightful!!

but asher can't have lasix, so so i asked dr b prescribe HCT instead. HCT (hydrochlorothiazide, which i spell out merely to show off, haha) is another diurretic, albeit a milder one than lasix. so instead of one dose, dr b prescribed seven. haha

anyway, there you have it. asher's flirting with congestive heart failure. and i'm going to spend a freaxious weekend watching him and praying that the HCT will handle things and he'll feel better.

that being said... please continue to pray for him. i still have my suspicions about the pacemaker, which was supposed to get checked on wednesday in toronto, but due to horrible weather, we didn't make it. asher and i got stuck overnight in hamilton, actually. but he is still complaining frequently that his heart is "sick" or "hurting" or "feels squeezed," and he was going to tell our toronto cardio this week that he frequently gets a lot of pain in his chest, left arm, neck, shoulder and jaw. he also tells me fairly often that his heart is "burning." this has been mentioned to cardio (london)... and yet, even though they know he doesn't generally reflux anymore unless his heart is doing things it shouldn't... they brushed it off. sigh. i know the reflux will resolve when his heart improves, so i'm not concerned about the reflux itself. it's just frustrating to know that something is wrong and docs don't seem to be listening.

so please pray for me, too. i'm tired, to be honest. the fontan was supposed to be it. it was supposed to usher us into the "promised land," where hearts are stable for a very long time and we can enjoy normal life. granted, he's more stable than he's ever been in the past... but that's not saying much. so i'm tired of all this heart stuff, and asher's tired of all this heart stuff, and i'm feeling burned out, and asher's scared of doctors again.

anyway, there you go. a little update. if anything happens over the weekend, i'll let you know. and when we see a doc next week (still need to reschedule for toronto), whether it's cardio here or there, or paeds, rest assured i'll fill you in on that, too. thanks for the prayers.