yesterday, out of the blue, i started to sing this song to the kidley-winks. oh, wait! i think blithe was working on math homework. that's probably it. anyway... i started singing this, and the kidley-winks absolutely loved it! so now, asher has asked that i put it on his blog, so that you can enjoy it, too.
and, of course, once i found a clip of the song performed on The Muppet Show, i had to post that one. ;)
enjoy!
Showing posts with label links. Show all posts
Showing posts with label links. Show all posts
Monday, October 24, 2011
Wednesday, August 3, 2011
after reading a particularly hilarious post on cake wrecks, asher has decided that he wants this song on his blog. enjoy!!
and seriously, go check out the cake wrecks post. after reading the first paragraph, before i'd even looked at a picture, i was laughing so hard my sides hurt and asher thought i was crying. it's just epic!!!!
and seriously, go check out the cake wrecks post. after reading the first paragraph, before i'd even looked at a picture, i was laughing so hard my sides hurt and asher thought i was crying. it's just epic!!!!
Friday, December 31, 2010
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?? :)
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?? :)
Monday, November 29, 2010
it's a sad day today.
my post this morning was inspired by a post on Adventures of a Funky Heart, written by Steve Catoe. the entire blog is devoted to CHD, providing tons of information about research, treatment, goals for the future.
Steve was born with tricuspid atresia. it's similar to HLHS, only on the other side of the heart. he had the BT shunt when he was very young (i forget what age), he had an early version of the fontan, he had a pacemaker. he survived sepsis, endocarditis, gout, CHF. he was one of the oldest CHD survivors.
i shared many times, both on this blog and on facebook, from his blog. the writing is incredible, and the information is invaluable. so many times, i commented on his posts, and he would reply, not only on the blog, but often directly to me, as well, usually making jokes or vowing to find the information i was seeking.
today we learned that steve, at the age of 44, passed away sometime late last night or early this morning.
to say he will be missed is an understatement. he was a relentless crusader for CHD. he was a cheerleader for heart warriors and their families. he was a fount of information. he was funny, intelligent, and encouraging.
please. if you know a heart warrior, hug them today. Steve lived a long time by CHD standards. not all CHDers have his kind of longevity. but i will end with a link to his post from the other day. it sums up his mission and goal.
A Cure for Heart Defects!
RIP, Funky Heart. our broken hearts are breaking. you will be missed.
Steve was born with tricuspid atresia. it's similar to HLHS, only on the other side of the heart. he had the BT shunt when he was very young (i forget what age), he had an early version of the fontan, he had a pacemaker. he survived sepsis, endocarditis, gout, CHF. he was one of the oldest CHD survivors.
i shared many times, both on this blog and on facebook, from his blog. the writing is incredible, and the information is invaluable. so many times, i commented on his posts, and he would reply, not only on the blog, but often directly to me, as well, usually making jokes or vowing to find the information i was seeking.
today we learned that steve, at the age of 44, passed away sometime late last night or early this morning.
to say he will be missed is an understatement. he was a relentless crusader for CHD. he was a cheerleader for heart warriors and their families. he was a fount of information. he was funny, intelligent, and encouraging.
please. if you know a heart warrior, hug them today. Steve lived a long time by CHD standards. not all CHDers have his kind of longevity. but i will end with a link to his post from the other day. it sums up his mission and goal.
A Cure for Heart Defects!
RIP, Funky Heart. our broken hearts are breaking. you will be missed.
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:
(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.)
the shunt was designed to help "blue babies," wee ones with a CHD known as Tetralogy of Fallot. in ToF, there are several issues:
- 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.
- 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.
- right ventricular hypertrophy. the right ventricle has to work harder than usual to overcompensate for the PS and VSD.
- 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.)
Friday, June 11, 2010
well, it's a day...
so here's the day so far: bram was complaining this morning that he couldn't walk, but he usually says that when he's tired, so i sent him to school. i figured that once he got there with all his friends he'd be distracted and feel fine. apparently, not so much. the school called at 9:02 to say that bram wasn't feeling well and could i please come pick him up. so i got there, and while i was chatting with his teacher, we heard a little "mrs b-? i just acccidentally threw up." poor little thing.
then off to asher's second session of therapy. that was kind of upsetting, but i tried not to cry. instead, i tried to just hold everything without judgement. just watch. but really, i wanted to cry.
he went straight to the cars and found one he liked best. he took that one to the sandtray and started to drizzle sand on it and bury it. completely. KW just let him play like that for a while, to soothe him, because what she had planned for the morning "might not be so soothing." or he might not react at all.
she pulled out two baskets full of medical-inspired toys. there were little IV poles and meds and nurses and doctors and heart monitors and a hospital bed and so forth. he placed them all in the sand, and proceded to bury some of them. the surgeon with a mask, buried. the nurse (i assume) was stuck in the sand up to the waist, then ignored. the heart monitor was put in the sand upside down, so the wavy line was covered. he drizzled sand all over the bed, but then dumped it off and put the bed aside. she gave him more more doctor-looking toys (white coats and stethoscope). he buried one, but left the other one entirely. didn't even touch it.
then he was allowed to put the medi-toys away, and was given a basket of cars again. he put them all in the sand... and buried them. all of them.
well, then time was up, so it was time to go home. asher seems tired, but likely not as drained as i am. he doesn't like to talk about what he's feeling. it's a rare moment when he opens up about this sort of thing. he just goes along as though everything is fine, but it would seem he's just burying his feelings. play therapy allows him to explore deeper feelings and issues in a free, non-threatening, non-judgemental environment. click on the title of this post to go to the play therapy page on wikipedia.
anyway, we still have one more appointment today for little asher. we go for a weight check with the paediatrician shortly after 2:00. i'll post later and tell you the results. please pray or whatever you do. we need a weight gain. thanks so much.
then off to asher's second session of therapy. that was kind of upsetting, but i tried not to cry. instead, i tried to just hold everything without judgement. just watch. but really, i wanted to cry.
he went straight to the cars and found one he liked best. he took that one to the sandtray and started to drizzle sand on it and bury it. completely. KW just let him play like that for a while, to soothe him, because what she had planned for the morning "might not be so soothing." or he might not react at all.
she pulled out two baskets full of medical-inspired toys. there were little IV poles and meds and nurses and doctors and heart monitors and a hospital bed and so forth. he placed them all in the sand, and proceded to bury some of them. the surgeon with a mask, buried. the nurse (i assume) was stuck in the sand up to the waist, then ignored. the heart monitor was put in the sand upside down, so the wavy line was covered. he drizzled sand all over the bed, but then dumped it off and put the bed aside. she gave him more more doctor-looking toys (white coats and stethoscope). he buried one, but left the other one entirely. didn't even touch it.
then he was allowed to put the medi-toys away, and was given a basket of cars again. he put them all in the sand... and buried them. all of them.
well, then time was up, so it was time to go home. asher seems tired, but likely not as drained as i am. he doesn't like to talk about what he's feeling. it's a rare moment when he opens up about this sort of thing. he just goes along as though everything is fine, but it would seem he's just burying his feelings. play therapy allows him to explore deeper feelings and issues in a free, non-threatening, non-judgemental environment. click on the title of this post to go to the play therapy page on wikipedia.
anyway, we still have one more appointment today for little asher. we go for a weight check with the paediatrician shortly after 2:00. i'll post later and tell you the results. please pray or whatever you do. we need a weight gain. thanks so much.
Monday, May 17, 2010
Imo Pectore
When the pope makes a decision about the naming of a cardinal, but declines to name that new cardinal publicly, because to name him publicly would bring unwelcome attention, which is to say that the government or regime or junta or dictatorship or commissariat or executive committee of the nation in which the new cardinal resides would be even more interested than usual in stilling the heart of the new cardinal, for fear of his increased influence on the hearts of the faithful in his country, then the pope keeps the new cardinal's name imo pectore - in the innermost recess of his heart. Other than His Holiness the Pontiff of Rome, no one knows how many more cardinals there are in the world than we think there are. Their names are revealed only after they die. Many times in the long history of the Roman Catholic Church the Pope has died suddenly without having the chance to inform anyone of the cardinals he holds in his heart; so when that particular pope's heart ceased to beat, the names of his secret cardinals flew from their muscular home and vanished. The more I think about this the more riveting it is to me. Lesson: there are secret words in every heart. For almost ten years now I have had five secret words in the innermost recess of my heart, and I reach in there sometimes and unpack the box they're in and inhale their redolent spice, always fresh, always restorative, always miraculous water to a thirsty man: he should do very well. I don't forget those words. Those are good words.
~ Brian Doyle, in The Wet Engine
the words i hold imo pectore: "One way or another he has always found his way." those are good words, too.
(click here or on the title of this post to go to amazon to order your copy of this amazing book.)
Sunday, May 16, 2010
please pray
hey folks! just a quick post tonight... and it's not about asher, because he's fine. he's got a cold, but he'll get over it. no worries. anyway....
i need to ask you, once again, to pray for asher's little friend brigid. she's not doing well. she's back in hospital with sepsis again, but a different bug than last time. this one is also from her gut that has been picked up by her blood. they've got a plan in place, but...
allison has had some pretty heartbreaking conversations with the docs, and things don't look good for brigid in the big picture. she's got some pretty heav-duty, complex issues going on, and well...
just pray. or whatever you do, please do it, and do it lots. this is a wonderful family, and brigid is such a sweetheart, and allison is a lovely woman and a great mom and honestly, one of the strongest, smartest people i know. i don't even know what to ask that you pray for... maybe give this a whirl... prayer when you don't have words. whatever you do, please do it now and over the next while. this is a very serious condition Brigid has, Allison is losing hope, even though she's doing amazingly well, but still... it's not looking good for her little girl right now, so please please pray. thanks. <3
i need to ask you, once again, to pray for asher's little friend brigid. she's not doing well. she's back in hospital with sepsis again, but a different bug than last time. this one is also from her gut that has been picked up by her blood. they've got a plan in place, but...
allison has had some pretty heartbreaking conversations with the docs, and things don't look good for brigid in the big picture. she's got some pretty heav-duty, complex issues going on, and well...
just pray. or whatever you do, please do it, and do it lots. this is a wonderful family, and brigid is such a sweetheart, and allison is a lovely woman and a great mom and honestly, one of the strongest, smartest people i know. i don't even know what to ask that you pray for... maybe give this a whirl... prayer when you don't have words. whatever you do, please do it now and over the next while. this is a very serious condition Brigid has, Allison is losing hope, even though she's doing amazingly well, but still... it's not looking good for her little girl right now, so please please pray. thanks. <3
Wednesday, May 12, 2010
We Heart Recipes
another heart mom (wendy, chris' mom) and i have started a blog together (yes, i know, i have a lot of blogs. LOL). it is a recipe blog called We Heart Recipes, and we post heart-friendly recipes (most of the time; there will be the occasional comfort-food recipe, as well). we'll be posting fairly regularly, not only the recipes but also any conditions it may help (i just posted the fat-free creamy pasta sauce i made for asher's chylothorax). there are some great links to check out, and our boys' stories. check it out, and check back regularly.
and for the record, the cappuccino at the top is decaf. ;)
and for the record, the cappuccino at the top is decaf. ;)
Monday, May 10, 2010
you've gotta check out this blog! (click the title of this post to take you there)
i have a link to this blog on the side bar (under "heart journeys") but i wanted to point it out to you tonight specifically. the blog is called Adventures of a Funky Heart! and it is written by a man in his 40s who is a CHD survivor... he was born with tricuspid atresia (the valve between the right atrium and right ventricle is closed... similar to asher's mitral atresia, but on the other side of the heart, and creating similar, but distinct, issues).
he's quite incredible, actually, working constantly to raise CHD awareness and to keep his readers abrest of the latest developments in the world of congenital heart disease and surgery... as well as a look back at some significant developments in the treatment of CHD. he also reaches out to his readers; in a recent post, he asked is there was anyone who had, or whose child had undergone, a one-and-a-half ventricular repair.
Funky Heart is a great blog. he updates regularly, his information is very interesting (especially if you're a heart mom, but i'm sure someone else out there might find it interesting, too). he included a link the other day to Dr John M, who is a (adult) cardiologist and electrophysiologist who writes about heart health, cardiology, and healthy living. also a great blog, also included in the sidebar here.
i highly recommend you check out these blogs, if you are at all interested in learning anything about wonky hearts. steve at funky heart is especially inspiring, given that he has CHD himself, and that he works so hard for the cause.
he's quite incredible, actually, working constantly to raise CHD awareness and to keep his readers abrest of the latest developments in the world of congenital heart disease and surgery... as well as a look back at some significant developments in the treatment of CHD. he also reaches out to his readers; in a recent post, he asked is there was anyone who had, or whose child had undergone, a one-and-a-half ventricular repair.
Funky Heart is a great blog. he updates regularly, his information is very interesting (especially if you're a heart mom, but i'm sure someone else out there might find it interesting, too). he included a link the other day to Dr John M, who is a (adult) cardiologist and electrophysiologist who writes about heart health, cardiology, and healthy living. also a great blog, also included in the sidebar here.
i highly recommend you check out these blogs, if you are at all interested in learning anything about wonky hearts. steve at funky heart is especially inspiring, given that he has CHD himself, and that he works so hard for the cause.
Tuesday, May 4, 2010
on a happier note...
only 3 days left of fat-free. which means...
friday is fat day!!! :) it's funny that i'm so excited about this. i don't usually cook high-fat; i think i just don't like being told that i can't do something. yes, i'm a bit of a rebel, i'll admit.
anyway, to see what we're having for supper on friday, click here or on the title of this post. and do note the amount of fat per serving. part of me wants to barf when i see it, but part of me just can't wait for friday.
hey, the kids aren't here for the next couple of days... maybe i'll give it a trial run. ;)
oh, yeah. some of you may not click the link. so i'll just tell you what the recipe is for. TACO PIE!! WITH GROUND BEEF AND CHEESE AND SOUR CREAM AND MORE CHEEESE AND TORTILLA CHIPS AND MORE CHEESE!!!!
friday is fat day!!! :) it's funny that i'm so excited about this. i don't usually cook high-fat; i think i just don't like being told that i can't do something. yes, i'm a bit of a rebel, i'll admit.
anyway, to see what we're having for supper on friday, click here or on the title of this post. and do note the amount of fat per serving. part of me wants to barf when i see it, but part of me just can't wait for friday.
hey, the kids aren't here for the next couple of days... maybe i'll give it a trial run. ;)
oh, yeah. some of you may not click the link. so i'll just tell you what the recipe is for. TACO PIE!! WITH GROUND BEEF AND CHEESE AND SOUR CREAM AND MORE CHEEESE AND TORTILLA CHIPS AND MORE CHEESE!!!!
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..."
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..."
Wednesday, February 17, 2010
yet another specialty for me to learn about... (because we all know i will!)
http://www.childrensdiscovery.org/content/chdc/featuredarticles.htm?page_id=51&inCtx13news=2&site_id=1&inCtx13view=2&inCtx13news_id=1&minor=0&major=1&inCtx13pg=0
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).
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).
Saturday, December 19, 2009
click this title or the text of this post to check out a VERY interesting article
well, this is interesting... they've identified a gene which leads to CHD... including (potentially) HLHS. it seems that researchers at the University of California, San Diego Medical Center may have stumbled upon something here. you can bet i'll be asking about this at our genetics appointment... once we get one (the referral is in; we're just waiting for the date).
Wednesday, December 9, 2009
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...)
when 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 passionately 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 delightfully (and horrifyingly) 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.)
another 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.
asher and i (and the rest of our family) have been through a lot over the last year. we've met a lot of cardiologists (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 anniversaries 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 determination 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.
thank-you, dr p, for everything you have done and continue to do for Asher. you truly are a gift from God.
sincerely,
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.)
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...)
when 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 passionately 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 delightfully (and horrifyingly) 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.)
another 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.
asher and i (and the rest of our family) have been through a lot over the last year. we've met a lot of cardiologists (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 anniversaries 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 determination 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.
thank-you, dr p, for everything you have done and continue to do for Asher. you truly are a gift from God.
sincerely,
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.)
Saturday, November 28, 2009
vote for me! :)
i don't know how many of you realize this, but i'm part of a huge network of health bloggers at http://www.wellsphere.com/ - communities of people blogging about a wide range of health issues (and not just paeds cardio - believe it or not, there ARE other health issues out there! who knew?! LOL). i'm part of the Children's Health Community. feel free to check out the site. it's pretty cool. :) there's an icon on the left sidebar, and you can click there to go to my profile, or just click the link above to go to Wellsphere and browse on your own.
anyhoo... right now there's the People's Health Blogger Awards 2009, and i'm in the running for Best Blogger in the Children's Health Community. there's a button on the right sidebar on this blog. click it and vote for me. :)
and then, feel free to add the "vote for heather" badge to your blog, too. the code is on my profile at wellsphere.
thanks so much!! :)
Subscribe to:
Posts (Atom)
