Wednesday, November 14, 2007
If you want to help
Well I kind of feel odd posting this but a few friends from work and the online world have asked how they can help. I really don't know right now what is going to be our biggest issue, I think basically we'll mostly be under a financial strain. We will have a lot of assistance, but if you want to help you can send us money through Paypal. I have an account set up that is directly linked to my bank account. All you have to do is go there and go to the tab "send funds". All you need to do is fill out the email address of who you want to send the money to and then the amount and where you want to take the money from (you need a paypal account to do this, but it is exceptionally easy to set up!) The email address you would send the money to is hartzke@hotmail.com There is a link in the Great websites section on the right to take you to paypal.
Thank you for all the well wishes and prayers (and keep them coming!) I am overwhelmed by the concern and care we have been receiving. We are very lucky to have you all, and I feel so blessed! I can't wait for BBseaton to meet you all!
Thank you for all the well wishes and prayers (and keep them coming!) I am overwhelmed by the concern and care we have been receiving. We are very lucky to have you all, and I feel so blessed! I can't wait for BBseaton to meet you all!
Tuesday, November 13, 2007
Glucose Tolerance
Boooo... Just had an OB appointment today and I now have to go for the two hour glucose test as my last one was on the high side.... Thank GOD we have a laptop as that waiting room is sooo boring! You'd think they's shell out for a t.v. or something.
Saturday, November 3, 2007
We have a DATE!
So as some of you may know, we had a follow-up appointment at Sick Kids for a fetal echo as well as an appointment at Mount Sinai Hospital with the special pregnancy clinic.
The day started off a little rocky as I wasn't told WHO or WHERE I was supposed to go once I got to Mount Sinai. All I was told was driving directions and to go to the 3rd floor of the Power Generator Building... Well little did I know that I was going to be SNAPPED at because I didn't know where I was supposed to go.. YOU'D think so. Well no...so I had to guess... and i guessed wrong! These were the directions I was given. "go to the left all the way to the end then go right." Okay... So I go and we end up in a bunch of offices...so I kinda look confused and this man asks "Can I help you? you look lost." I say "I am lost" and I swear that was all I said. and He goes...just go this way Liz is waiting for you. And I think...who the hell is Liz? but I go and as we go Tyler points out that the hallway is getting progressively smaller and smaller. So at this point I'm starting to get upset and i can tell i'm about to cry. So I meet up with another man who again asks me if he can help me. So i tell him i have an appointment, but nobody told me where to go. but that my baby has HLHS. He points me down the hallway and says go to the second corridor on the right and you'll come in the backway to where you are supposed to be. So I go...and I'm like.. which corridor...but he;s gone...and i am full blown crying now and just so frustrated that nobody will take the time to just walk me to where I am going. I just sit down in a chair trying to calm down and Ty wants me to stop crying... (if anyone knows me thats much easier said than done. I can work myself into a frenzy) So a ladie comes out of her little office booth and Tyler explains to her whats going on and she just takes me to where i am supposed to go. "Special Pregnancy Clinic" Hello if anyone would have thought to tell me that I could have avoided the whole stress.
ANYHOO... so I have my appointment where they basically take my background and then do a scan of the baby. The Tech was so good she pointed out everything to us. (Tyler cannot figure anything out) and apparently he has a rather large head. LOL and he weighs approx 3 lbs 7oz.
Everything else with him is normal and he is considered healthy, other than his heart defect.
So I get the same old questions about having an amniocentesis. (NO THANKS) and questions about why we want to choose surgery over transplant... and if we've been told all the options. (obviously this Dr. doesn't know how honest and up front Sick Kids is with parents)
Anyhoo.... He has set a "temporary induction date" for Jan 3rd 2008. WOOHOO!!! i still have to go back to meet with the antenatal team and doctor that will be delivering. An appointment has yet to be set up for that. But unless something unforseen happens...Thats the date!
As for my time at Sick Kids...We had another echo and there was no change in diagnosis. We got to ask a few questions. but basically things are still just a waiting game.
We got to meet with a socialworker who basically just told us about a few places to stay (apparently it'll take some time to get into the Ronald McDonald House) and we put off having a tour until our next visit. Then we met with Jennifer one of the Single Ventricle Nurses. She explained a lot of what her job is and what will be happening once BBSeaton is out of critical care. She explained about the milestones that we'll have to reach before he can come home. and how we'll be set up with a pediatrician here in London. We're hoping also that he will be able to have after care at the Childrens Hospital here in London with Dr. Pepalassis. If he has care here in London that will make us elegible for a reimbursment program where we can get most of the money back we spent while in hospital. There will also be a home nurse that will come for weekly visits to check all of the baby's vitals and make sure he's gaining weight and generally healthy.
As you can see, we are in for the ride of our lives. I have no doubt that I am carrying one of the strongest little boys right now. I was talkin to Tyler about how it'll be nice once this is all over to have the baby fall and scrape his knee be the biggest thing we have to worry about. It'll be kind of ironic to console him for such an insignificant thing considering everything he's going to have to go through.
I am so lucky to have him in my life!
The day started off a little rocky as I wasn't told WHO or WHERE I was supposed to go once I got to Mount Sinai. All I was told was driving directions and to go to the 3rd floor of the Power Generator Building... Well little did I know that I was going to be SNAPPED at because I didn't know where I was supposed to go.. YOU'D think so. Well no...so I had to guess... and i guessed wrong! These were the directions I was given. "go to the left all the way to the end then go right." Okay... So I go and we end up in a bunch of offices...so I kinda look confused and this man asks "Can I help you? you look lost." I say "I am lost" and I swear that was all I said. and He goes...just go this way Liz is waiting for you. And I think...who the hell is Liz? but I go and as we go Tyler points out that the hallway is getting progressively smaller and smaller. So at this point I'm starting to get upset and i can tell i'm about to cry. So I meet up with another man who again asks me if he can help me. So i tell him i have an appointment, but nobody told me where to go. but that my baby has HLHS. He points me down the hallway and says go to the second corridor on the right and you'll come in the backway to where you are supposed to be. So I go...and I'm like.. which corridor...but he;s gone...and i am full blown crying now and just so frustrated that nobody will take the time to just walk me to where I am going. I just sit down in a chair trying to calm down and Ty wants me to stop crying... (if anyone knows me thats much easier said than done. I can work myself into a frenzy) So a ladie comes out of her little office booth and Tyler explains to her whats going on and she just takes me to where i am supposed to go. "Special Pregnancy Clinic" Hello if anyone would have thought to tell me that I could have avoided the whole stress.
ANYHOO... so I have my appointment where they basically take my background and then do a scan of the baby. The Tech was so good she pointed out everything to us. (Tyler cannot figure anything out) and apparently he has a rather large head. LOL and he weighs approx 3 lbs 7oz.
Everything else with him is normal and he is considered healthy, other than his heart defect.
So I get the same old questions about having an amniocentesis. (NO THANKS) and questions about why we want to choose surgery over transplant... and if we've been told all the options. (obviously this Dr. doesn't know how honest and up front Sick Kids is with parents)
Anyhoo.... He has set a "temporary induction date" for Jan 3rd 2008. WOOHOO!!! i still have to go back to meet with the antenatal team and doctor that will be delivering. An appointment has yet to be set up for that. But unless something unforseen happens...Thats the date!
As for my time at Sick Kids...We had another echo and there was no change in diagnosis. We got to ask a few questions. but basically things are still just a waiting game.
We got to meet with a socialworker who basically just told us about a few places to stay (apparently it'll take some time to get into the Ronald McDonald House) and we put off having a tour until our next visit. Then we met with Jennifer one of the Single Ventricle Nurses. She explained a lot of what her job is and what will be happening once BBSeaton is out of critical care. She explained about the milestones that we'll have to reach before he can come home. and how we'll be set up with a pediatrician here in London. We're hoping also that he will be able to have after care at the Childrens Hospital here in London with Dr. Pepalassis. If he has care here in London that will make us elegible for a reimbursment program where we can get most of the money back we spent while in hospital. There will also be a home nurse that will come for weekly visits to check all of the baby's vitals and make sure he's gaining weight and generally healthy.
As you can see, we are in for the ride of our lives. I have no doubt that I am carrying one of the strongest little boys right now. I was talkin to Tyler about how it'll be nice once this is all over to have the baby fall and scrape his knee be the biggest thing we have to worry about. It'll be kind of ironic to console him for such an insignificant thing considering everything he's going to have to go through.
I am so lucky to have him in my life!
Monday, October 22, 2007
Here we go again
For anyone that has subscribed or actually keeps updating themselves on here, we're heading back to Toronto Nov 2nd.
We have a meeting at 10 am at Mount Sinai to meet with the High Risk Obstetrics Team. Hopefully we'll have an induction date then! Then at 1pm we're back at Sick Kids to have another fetal echo (ultrasound to look specifically at baby's heart). Hopefully no more complications have arrised and we're still just a classic case of HLHS (no other additional defects on top of things). I think we'll be meeting with our cardiothorasic surgeon too. (The hero that will perform surgery). Not to forget the "single ventricle nurse" that will be taking on our case. (these nurses have one patient at a time to ensure they notice any small changes. That way they can't confuse one patient with another and can alert doctors immediately when something is happening).
Oh and then the end will be to meet with a social worker who will explain all about the financial aide we can recieve and give us more information on the Ronald McDonald House as well as a list of hotels that give us hospital rates.
Special thanks to Dave Khey for getting us a discount at the Marriot Eatons Center. Majorly discounted plus it will still be included in the financial relief so even less! Yay for luxury!
Another Thanks to the families from www.hopeforhlhs.com. your stories have really helped us to prepare for what we're about to experience. I must keep in mind this is a "two steps forward, one step back" sort of journey. I must have trust in the professionals to do all they can to save BB seaton's life!
We have a meeting at 10 am at Mount Sinai to meet with the High Risk Obstetrics Team. Hopefully we'll have an induction date then! Then at 1pm we're back at Sick Kids to have another fetal echo (ultrasound to look specifically at baby's heart). Hopefully no more complications have arrised and we're still just a classic case of HLHS (no other additional defects on top of things). I think we'll be meeting with our cardiothorasic surgeon too. (The hero that will perform surgery). Not to forget the "single ventricle nurse" that will be taking on our case. (these nurses have one patient at a time to ensure they notice any small changes. That way they can't confuse one patient with another and can alert doctors immediately when something is happening).
Oh and then the end will be to meet with a social worker who will explain all about the financial aide we can recieve and give us more information on the Ronald McDonald House as well as a list of hotels that give us hospital rates.
Special thanks to Dave Khey for getting us a discount at the Marriot Eatons Center. Majorly discounted plus it will still be included in the financial relief so even less! Yay for luxury!
Another Thanks to the families from www.hopeforhlhs.com. your stories have really helped us to prepare for what we're about to experience. I must keep in mind this is a "two steps forward, one step back" sort of journey. I must have trust in the professionals to do all they can to save BB seaton's life!
Monday, October 15, 2007
God Said NO (This is SOOO neat!)
__,_._,___
Friday, October 12, 2007
Some Mothers get Babies with Something More
Some Mothers Get Babies With Something More
Written by: Lori Borgman Columnist and Speaker
My friend is expecting her first child. People keep asking what shewants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will rollover, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by thebillions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want,but we mothers want what we want.
Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.
As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at sometime or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a drafthorse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.
You're a wonder.
Written by: Lori Borgman Columnist and Speaker
My friend is expecting her first child. People keep asking what shewants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.
Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will rollover, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by thebillions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want,but we mothers want what we want.
Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.
As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at sometime or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a drafthorse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.
You're a wonder.
Tuesday, October 9, 2007
Stress
Well, this is just a day of deep thinking...thoughts swirling and swirling. I sure can't wait until we go to Sick Kids again. (Nov 2nd) So many questions and worries and i just need some answers. I am stressing so much over whether of not to put BB Seaton through the hybrid procedure or to just go straight into stage 1 Norwood. I hear so many stories of babies coming out of the Norwood and doing well, i wonder if its even neccessary to go though the hybrid....isn't that just delaying the inevitable? Wouldn't you want to get the biggest hump out of the way...instead of puting it off until the baby is bigger and the hump is a little bigger? Whats the logic behind that? I hope the surgeons have some answers for me... as well as the single ventrile nurses.
I mean I know that every baby is different, but can we not generalize here even a little bit? These single ventricle nurses have been there every step of the way with babys hybrid or no hybrid. They must have some inclination on how much of a benefit the hybrid is for the baby.
I mean I know that every baby is different, but can we not generalize here even a little bit? These single ventricle nurses have been there every step of the way with babys hybrid or no hybrid. They must have some inclination on how much of a benefit the hybrid is for the baby.
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