So it's December.
I spent the month of November getting together all of the things I need in order to apply for my Master's program for the Fall of 2014. Writing letters of intent, asking for references, getting transcripts, updating my CV, busy, busy, busy...
Sometimes if I think really hard about it, I can get excited about the idea of moving on (up?) in my career, working towards a plan that I've had since I was in nursing school...
...but, lately I can't get the sad, unhappy, disappointing parts of my life out of my head. I think about Aidan a lot. I think about Kaia's pregnancy. I worry about my heart. I'm sad it's looking less and less likely that there will ever be another baby in our house. In my head, school looms as the end point. Time to move on. I feel I'm being dragged, kicking and screaming.
Friends, family and colleagues have asked if we are ever going to have another baby, and I give them all the same answer of "well, after two difficult pregnancies, and one loss we aren't sure it's a good idea..." Everyone always nods knowingly and agrees it's a big decision and perhaps not in our best interest.
I almost never tell anyone that we've tried....for over year...and failed... At this point, I find our (mine? his? our?) fertility, or lack thereof harder to talk about than my dead child. I could chat about Aidan almost any old time, and do to anyone who asks. Because that sadness, that failure, is old. His death has healed over somewhat. The (likely) loss of Third baby is a new sadness, a new disappointment. It's still happening.
Every. Goddamn. Month.
***
What also screws with my emotions on the subject is that every month, along with the feelings of sadness and disappointment, is, well...
relief.
Relief that this isn't the month that I have to start to worry. About every little twinge. Any speck of blood. Any more strain on my heart. Both literally and figuratively.
I also feel sad about the relief. Because maybe it means I really don't want another baby THAT badly. If I feel relief about not being pregnant, maybe it's only the newness, the wonder, the excitement that a new baby provides that I crave, and not really the baby itself. There is also relief in the relief...because maybe if I'm relieved now, in 10 years when the possibility of ever having another child is long since past, maybe I won't feel so sad.
Then the guilt comes. Guilt for not trying harder to fix whatever it is that's wrong. For denying Kaia the chance at a (living) sibling. For denying the grandparents the possibility of another grandchild. For failing both Brian and myself. We both want this...so why can't we just suck it up and forge ahead. Tons of people do. Make that RE appointment Emily...just do it.
Then the niggling doubt.
Maybe it's not happening because it's not suppose to. Maybe your heart wouldn't tolerate it this time. Maybe it wouldn't be the redemptive pregnancy you dream of. Maybe it would be a new kind of awful? Or maybe the Breus mole and pPROM (TWICE) isn't a fluke. Maybe your genetics just suck and it's time to count your blessings and move on.
Maybe if it happened, you would wish it hadn't...
Then the wondering if we should consider other options. Adoption? Surrogacy?
Both of them seem so far removed from anything I could ever imagine us attempting. The time, the money, the never-ending hoops to jump through. Most importantly the wearing of our hearts on our sleeves. I learned through our experience with Aidan and Kaia that when things get emotional, Brian and I tend to curl into ourselves, praying for privacy and space. Could we ever make it through either of those processes, laying our hearts bare for strangers to see? I see it turn out well for people...but what did it take to get there? What number of sadnesses lay just beneath the surface? Plus we already have a living child, so it's difficult to imagine anyone with either a child or a womb to donate picking us over the thousands of others who admittedly, probably deserve it more.
Both adoption and surrogacy seem like amazing experiences...that only occur for other people.
***
All of this is just background noise. My daily life consists of a healthy two year old who is thriving. A good home. A happy marriage. A supportive family. An engaging workplace.
Aidan is missing, of course. He will always be missing. He was a real person who had a name and a story, no matter how short. People are generally understanding when I say I miss him. When I think about him. When I wish he was here.
But now, I feel like Third baby is missing too. A person no one ever saw or imagined. Who has no name. No gender. No story. Who never was. Maybe the hardest part is that I get the sinking feeling that if he or she never materializes, I will miss Third baby in the same way I do Aidan.
And no one will understand.
Tuesday, December 10, 2013
Friday, October 11, 2013
Happy Birthday?
So today I turned 31.
And....
so did my eggs.
*sigh*
At least I have this perfect little egg to wish me "Happy Birday Mommy!" because everyone knows two year old kisses are the best!
Happy Thanksgiving to all my Canadian peeps!
And....
so did my eggs.
*sigh*
At least I have this perfect little egg to wish me "Happy Birday Mommy!" because everyone knows two year old kisses are the best!
Happy Thanksgiving to all my Canadian peeps!
Sunday, October 6, 2013
Kiss it Good-bye
So this friend of mine (mentioned in this post), has one daughter who is a year older than Kaia.
We were talking the other day and her daughter is going to be sent to see (yet another) specialist at the local children's hospital. It's probably not serious, but it's another medical specialist to be seen and another issue to be dealt with. So she remarks to me (again), that this is now the final thing that means her and her husband won't be having another child. She jokingly said "we aren't even finished fixing this one up yet!"
While part of me laughs and totally gets that it sucks to have yet another medical issue crop up after years of dealing with one thing after another, another little part of me (probably located somewhere near my congenital cardiac defect...right next to my dead baby) feels a little miffed. Yes, not everyone is born perfect....sucks don't it?
Then my friend says "we are considering having [insert her husband's name here] go for a vasectomy".
Huh.
My immediate question was whether her husband is as solid on not wanting any more kids either. Her answer was that he would have another one if she wanted one, but since she doesn't, he's fine with that.
Perhaps because I play the 'what if' game with myself all the time, I immediately began thinking of scenarios in my head.
a) What if my friends divorced? This happened to a friend of a friend of mine. He wanted another. She was done with two. Hubby went for a vasectomy and then his wife left him...for another woman (pretty sure there aren't anymore kids in this woman's future). This guy, who is still young by anyone's standards, could remarry and have more kids, but now he's sterile. Needless to say, he is beyond pissed. It also happened to my cousin. He and his wife were done at three. Then they divorced. He went on to meet another woman, got a vasectomy reversal (In Canada: free to go sterile, $5000 to undo it) and they had another child together. Then, because of their ages, he got it done again. I guess everyone has their limits when birth control becomes that big of a hassle that one no longer wants to even have to consider it anymore, but in my mind you BOTH should be REALLY REALLY sure.
b) What if my (female) friend died? As an example, my mom, after she had my younger brother, was told not to have anymore children due to possible risks to her health. When I was about 6 and my brother was 3, my mom got her tubes tied. She had two and was happy with that. Although it's more of an invasive procedure for the female to get sterilized, her reasoning was that out of the two of them, SHE was the one who couldn't have more kids, so why take that possibility away from my dad, if anything should happen to her? In our case, this would be my decision too, since I'm the one with the heart defect. In my opinion since my friend is the one solidly not wanting anymore kids, maybe this should be a decision (and a surgery) that she takes upon herself, and doesn't put on her husband.
c) What if (and this of course hits close to home), their daughter died? Their daughter's medical conditions have, so far, never been life threatening in the extreme, but what if something else is around the corner? I worry about this all the time with Kaia, because I know the devastation of loss. The loss of an only child is not only the loss of a child, but the loss of one's parenthood. It's one of the things that weighs heavy on my mind, knowing I may end up having an only (living) child. I know my friend worries about the possible medical complications in a second child, that they could be worse than her first, but I don't know if she's ever thought about the loss of the one she has. I don't know if I should even bring it up because no parent ever wants to think about that. Plus, if they really DON'T want anymore children, does the outside chance of future loss outweigh their current desire for only one child? In my mind, death is always something to consider. In theirs, maybe it's not.
It, of course, also stings that while Brian and I are trying to have another child, despite all the complications we've faced and could face in the future, friends of ours who are exactly our age, with exactly the same number of (living) kids (only one!), are preparing to kiss their fertility good-bye.
I dream of the day when my family is exactly the way I want it. It will always be minus Aidan, but I wish it didn't have to be minus Third baby too. I would be so nice to no longer have that twinge when I pass a pregnant woman on the street or hold a snugly baby and wish it was mine. If only I could watch Kaia and her sibling play and interact, and have a child on either side of me when I read stories at night. It would be so nice to feel a sense of completion. I'm afraid I'm never going to have that.
Some day (far in the future?) we might have the sterilization conversation too...but not yet...definitely not yet.
How do you know when you're done with having children? If you're there, what made you decide?
We were talking the other day and her daughter is going to be sent to see (yet another) specialist at the local children's hospital. It's probably not serious, but it's another medical specialist to be seen and another issue to be dealt with. So she remarks to me (again), that this is now the final thing that means her and her husband won't be having another child. She jokingly said "we aren't even finished fixing this one up yet!"
While part of me laughs and totally gets that it sucks to have yet another medical issue crop up after years of dealing with one thing after another, another little part of me (probably located somewhere near my congenital cardiac defect...right next to my dead baby) feels a little miffed. Yes, not everyone is born perfect....sucks don't it?
Then my friend says "we are considering having [insert her husband's name here] go for a vasectomy".
Huh.
My immediate question was whether her husband is as solid on not wanting any more kids either. Her answer was that he would have another one if she wanted one, but since she doesn't, he's fine with that.
Perhaps because I play the 'what if' game with myself all the time, I immediately began thinking of scenarios in my head.
a) What if my friends divorced? This happened to a friend of a friend of mine. He wanted another. She was done with two. Hubby went for a vasectomy and then his wife left him...for another woman (pretty sure there aren't anymore kids in this woman's future). This guy, who is still young by anyone's standards, could remarry and have more kids, but now he's sterile. Needless to say, he is beyond pissed. It also happened to my cousin. He and his wife were done at three. Then they divorced. He went on to meet another woman, got a vasectomy reversal (In Canada: free to go sterile, $5000 to undo it) and they had another child together. Then, because of their ages, he got it done again. I guess everyone has their limits when birth control becomes that big of a hassle that one no longer wants to even have to consider it anymore, but in my mind you BOTH should be REALLY REALLY sure.
b) What if my (female) friend died? As an example, my mom, after she had my younger brother, was told not to have anymore children due to possible risks to her health. When I was about 6 and my brother was 3, my mom got her tubes tied. She had two and was happy with that. Although it's more of an invasive procedure for the female to get sterilized, her reasoning was that out of the two of them, SHE was the one who couldn't have more kids, so why take that possibility away from my dad, if anything should happen to her? In our case, this would be my decision too, since I'm the one with the heart defect. In my opinion since my friend is the one solidly not wanting anymore kids, maybe this should be a decision (and a surgery) that she takes upon herself, and doesn't put on her husband.
c) What if (and this of course hits close to home), their daughter died? Their daughter's medical conditions have, so far, never been life threatening in the extreme, but what if something else is around the corner? I worry about this all the time with Kaia, because I know the devastation of loss. The loss of an only child is not only the loss of a child, but the loss of one's parenthood. It's one of the things that weighs heavy on my mind, knowing I may end up having an only (living) child. I know my friend worries about the possible medical complications in a second child, that they could be worse than her first, but I don't know if she's ever thought about the loss of the one she has. I don't know if I should even bring it up because no parent ever wants to think about that. Plus, if they really DON'T want anymore children, does the outside chance of future loss outweigh their current desire for only one child? In my mind, death is always something to consider. In theirs, maybe it's not.
It, of course, also stings that while Brian and I are trying to have another child, despite all the complications we've faced and could face in the future, friends of ours who are exactly our age, with exactly the same number of (living) kids (only one!), are preparing to kiss their fertility good-bye.
I dream of the day when my family is exactly the way I want it. It will always be minus Aidan, but I wish it didn't have to be minus Third baby too. I would be so nice to no longer have that twinge when I pass a pregnant woman on the street or hold a snugly baby and wish it was mine. If only I could watch Kaia and her sibling play and interact, and have a child on either side of me when I read stories at night. It would be so nice to feel a sense of completion. I'm afraid I'm never going to have that.
Some day (far in the future?) we might have the sterilization conversation too...but not yet...definitely not yet.
How do you know when you're done with having children? If you're there, what made you decide?
Wednesday, August 14, 2013
The Clomid Experience and PVCs
So yeah, not pregnant. Not even a little bit. Crickets chirping over hear.
Back in June, after two months in a row of my Clear Blue Easy Ovulation monitor reading "High" fertility for many days, but never registering an 'ovulation' day, I decided that I must be more fucked up in the reproductive department than I realized. I figured if we were truly trying to make a go of conceiving Third baby, I better get my ass to the doctor stat to figure out plan B (but not ya'know the medication of the same name, as that would be counterproductive).
My doctor immediately upon hearing of my ovulation woes, decided to give me a script for three rounds of 50mg of clomid, the 'go to' medication for ovulation, stating if that didn't work she'd up it to 100mg. Instructions: Take on days 5 to 9 of your cycle, watch out for mood swings, hot flashes and sore boobs. Come back if you're pregnant. See ya, good luck!
Later the same week after taking the Clomid for the first time, I had my cardiology appointment, which completely scared the shit out of me, and made me question whether or not having another kid was such a good idea. I mean, if supposedly my heart is going to need a new valve in < 10 years, is it really smart to stress it out with yet another (possibly screwed up, but hopefully not!!!) pregnancy? Plus what if another baby compromises my health even more than a new valve could fix? I desperately wish for a sibling for Kaia, but not at the expense of her not having a mom. I figure moms are kind of important too.
But, I really want another baby...I really really do...
So with all this muddling around in my brain, the time of ovulation arrived...and I started to have PVCs. PVCs for you laymen out there are basically when your heart skips a beat, or seems to pause for slightly longer than normal, and then seems to 'thunk' or contract harder than usual, and then continues beating as normal. Sort of like a heart 'hiccup'. They generally aren't dangerous, and happen to lots of people with normal averages hearts, but they are a bit unnerving. I've mentioned these occurrences to my cardiologists before, and these skipped beats have been picked up on my 24 hour ECGs (Holter monitor), and nary a fuss has been made about them, so I've never really concerned myself too much. But during this Clomid cycle, all of a sudden they started happening multiple times per MINUTE. I go from noticing one every once in awhile (hours often days apart) to literally being able to sit there and count them....1........2......3.....4.....
It probably didn't help that I had a cold at the time, so I was ill on top of being hormonal, but HOLY SHIT it was scary as I lay there in bed feeling:
beat...beat...beat........THUNK....beat....beat...beat...beat.......THUNK..... I hauled out my stethoscope and had Brian take a listen. Even he thought my heart sounded weird.
The Google research I did supported my supposition that it was the Clomid causing the PVCs as others with normal hearts report having them, plus the PVCs stopped after the ovulation period was over, when I assume the meds quit working. The entire experience scared me enough though that I haven't taken the Clomid again.
So we are back to the rock and the hard place....if I'm not ovulating regularly or strongly on my own then pregnancy is unlikely to happen without further assistance, AND I can't take Clomid, which is the only fertility medication my family doctor feels qualified to prescribe me, BUT Brian isn't too keen about returning to the reproductive endocrinologist, AND I'm freaked out enough about getting pregnant again due to my own health issues, PLUS it seems stupid and foolhardy to pay $$$$ to get pregnant with possibly (but hopefully not!!!!) disastrous consequences....
HOWEVER we really, really want another baby.....and I feel guilty that I'm unable to provide Third baby for my family. I worry Kaia will be the only (living) grandchild on my side of the family as my brother and his girlfriend seem in no hurry to reproduce. My parents love Kaia so much, I wish they had lots more grand kids to spoil. I worry that Kaia will never have a sibling and this will somehow damage her for life. My brother was the best present my parents ever gave me and I can't imagine my life without him. I feel badly that if Brian had married someone else, he might have that 2+ kids he would like. I'm just sad. So tired of this being an issue. So tired of feeling like my body is failing.
I feel as though our hopes for Third baby are circling the drain.
I'm so tired of caring about this. I wish I didn't care.
But I do.
So much.
***
It's not helping that tomorrow, August 15th, is Aidan's third anniversary due date. A day that means both nothing and everything.
He would/should/could have been 3.
I wish you love, my son, on this, your 3rd non-birthday. Today and every day.
Back in June, after two months in a row of my Clear Blue Easy Ovulation monitor reading "High" fertility for many days, but never registering an 'ovulation' day, I decided that I must be more fucked up in the reproductive department than I realized. I figured if we were truly trying to make a go of conceiving Third baby, I better get my ass to the doctor stat to figure out plan B (but not ya'know the medication of the same name, as that would be counterproductive).
My doctor immediately upon hearing of my ovulation woes, decided to give me a script for three rounds of 50mg of clomid, the 'go to' medication for ovulation, stating if that didn't work she'd up it to 100mg. Instructions: Take on days 5 to 9 of your cycle, watch out for mood swings, hot flashes and sore boobs. Come back if you're pregnant. See ya, good luck!
Later the same week after taking the Clomid for the first time, I had my cardiology appointment, which completely scared the shit out of me, and made me question whether or not having another kid was such a good idea. I mean, if supposedly my heart is going to need a new valve in < 10 years, is it really smart to stress it out with yet another (possibly screwed up, but hopefully not!!!) pregnancy? Plus what if another baby compromises my health even more than a new valve could fix? I desperately wish for a sibling for Kaia, but not at the expense of her not having a mom. I figure moms are kind of important too.
But, I really want another baby...I really really do...
So with all this muddling around in my brain, the time of ovulation arrived...and I started to have PVCs. PVCs for you laymen out there are basically when your heart skips a beat, or seems to pause for slightly longer than normal, and then seems to 'thunk' or contract harder than usual, and then continues beating as normal. Sort of like a heart 'hiccup'. They generally aren't dangerous, and happen to lots of people with normal averages hearts, but they are a bit unnerving. I've mentioned these occurrences to my cardiologists before, and these skipped beats have been picked up on my 24 hour ECGs (Holter monitor), and nary a fuss has been made about them, so I've never really concerned myself too much. But during this Clomid cycle, all of a sudden they started happening multiple times per MINUTE. I go from noticing one every once in awhile (hours often days apart) to literally being able to sit there and count them....1........2......3.....4.....
It probably didn't help that I had a cold at the time, so I was ill on top of being hormonal, but HOLY SHIT it was scary as I lay there in bed feeling:
beat...beat...beat........THUNK....beat....beat...beat...beat.......THUNK..... I hauled out my stethoscope and had Brian take a listen. Even he thought my heart sounded weird.
The Google research I did supported my supposition that it was the Clomid causing the PVCs as others with normal hearts report having them, plus the PVCs stopped after the ovulation period was over, when I assume the meds quit working. The entire experience scared me enough though that I haven't taken the Clomid again.
So we are back to the rock and the hard place....if I'm not ovulating regularly or strongly on my own then pregnancy is unlikely to happen without further assistance, AND I can't take Clomid, which is the only fertility medication my family doctor feels qualified to prescribe me, BUT Brian isn't too keen about returning to the reproductive endocrinologist, AND I'm freaked out enough about getting pregnant again due to my own health issues, PLUS it seems stupid and foolhardy to pay $$$$ to get pregnant with possibly (but hopefully not!!!!) disastrous consequences....
HOWEVER we really, really want another baby.....and I feel guilty that I'm unable to provide Third baby for my family. I worry Kaia will be the only (living) grandchild on my side of the family as my brother and his girlfriend seem in no hurry to reproduce. My parents love Kaia so much, I wish they had lots more grand kids to spoil. I worry that Kaia will never have a sibling and this will somehow damage her for life. My brother was the best present my parents ever gave me and I can't imagine my life without him. I feel badly that if Brian had married someone else, he might have that 2+ kids he would like. I'm just sad. So tired of this being an issue. So tired of feeling like my body is failing.
I feel as though our hopes for Third baby are circling the drain.
I'm so tired of caring about this. I wish I didn't care.
But I do.
So much.
***
It's not helping that tomorrow, August 15th, is Aidan's third anniversary due date. A day that means both nothing and everything.
He would/should/could have been 3.
I wish you love, my son, on this, your 3rd non-birthday. Today and every day.
Monday, August 12, 2013
Right Where I Am: 3 years, 3 months, 3 weeks and 1 day
Once, I read an article describing the experiences of people who have regained the ability to see after a lifetime of blindness. After relating to the world without sight, depending on all of their other senses to guide them, these people found it hard to assimilate the visual sensory input. For example, seeing an apple. You and I would immediately know what it is, just by looking at it. Those who were blind, would not know what the object was, until they picked it up, felt its roundness, smooth skin, smelt it's apple-y smell, or tasted it's juicy flesh. They had no idea what an apple should look like. They had no visual reference for anything. It was only over time that they were able to begin to make sense of the visual world.
Over 3 years out now from Aidan's death and I feel as though I have the opposite of this problem. I can no longer picture what my life would look like with a living Aidan in it. Immediately after he died, I had a running timeline of what I 'should' be doing and I could 'see' it all so clearly.
June 2010: "I should be 34 weeks pregnant, not lifting and carrying heavy boxes helping my friends move". I could imagine my big belly, almost feel his kicks.
August 2010: "I should have a newborn to take care of, off on maternity leave, not returning to work at a new job". It felt like a daily surprise that the room that was to be his was empty. How could he not be here?
December 2010: "I should have a baby to take to this family Christmas party, instead my arms are empty". Watching my relatives coo and awe over my cousin's baby who was born in July 2010, I felt angry when the first present of the night was handed out to her, the 'youngest'. That gift, that title, should have been Aidan's.
April 2011: "It's a year since he was born...if he had lived I would be planning a 1st birthday party". But instead I was on bed rest again, agonizing over the fate of baby number 2...and wait a minute, he should have been born in August and would really only be 8 months old...and I likely wouldn't be pregnant again, and thus not concerned about baby number two...
Then Kaia arrived, and the timeline of the way life 'should' have been was permanently altered, because likely she wouldn't be if he was...and how could I see anything else but her? The farther out I am from his death, the harder time I have imaging what life with him should look like. Over time I have slowly gone 'blind' to those should haves. I've lost reference to what my life with him would have been. Most days my life is filled with who and what is...not who or what is not.
Yet as I lay in bed at night, quiet, in the dark, I so often think before I drift off to sleep: "I miss you Aidan. I wish you were here".
He truly never goes away.
Over 3 years out now from Aidan's death and I feel as though I have the opposite of this problem. I can no longer picture what my life would look like with a living Aidan in it. Immediately after he died, I had a running timeline of what I 'should' be doing and I could 'see' it all so clearly.
June 2010: "I should be 34 weeks pregnant, not lifting and carrying heavy boxes helping my friends move". I could imagine my big belly, almost feel his kicks.
August 2010: "I should have a newborn to take care of, off on maternity leave, not returning to work at a new job". It felt like a daily surprise that the room that was to be his was empty. How could he not be here?
December 2010: "I should have a baby to take to this family Christmas party, instead my arms are empty". Watching my relatives coo and awe over my cousin's baby who was born in July 2010, I felt angry when the first present of the night was handed out to her, the 'youngest'. That gift, that title, should have been Aidan's.
April 2011: "It's a year since he was born...if he had lived I would be planning a 1st birthday party". But instead I was on bed rest again, agonizing over the fate of baby number 2...and wait a minute, he should have been born in August and would really only be 8 months old...and I likely wouldn't be pregnant again, and thus not concerned about baby number two...
Then Kaia arrived, and the timeline of the way life 'should' have been was permanently altered, because likely she wouldn't be if he was...and how could I see anything else but her? The farther out I am from his death, the harder time I have imaging what life with him should look like. Over time I have slowly gone 'blind' to those should haves. I've lost reference to what my life with him would have been. Most days my life is filled with who and what is...not who or what is not.
Yet as I lay in bed at night, quiet, in the dark, I so often think before I drift off to sleep: "I miss you Aidan. I wish you were here".
He truly never goes away.
Tuesday, July 9, 2013
Happy Birthday!
My baby is 2 today! She's wonderful, adorable, smart, funny, engaging and gregarious. She can also be a whiny, bratty, biting, scratching, Dora-demanding, hot-mess of a toddler!
I wouldn't have it any other way.
Kaia, "You know, you really wear me out. But I love you anyway".
And I'm pretty sure, despite all our faults, you'd tell Daddy and Me if you could that you "love us anyway too".
Happy 2nd Birthday to my extra special girl.
*Updated to add: Go check out last year's post about her 1st birthday party. Holy Hannah (as my mother would say!), CHECK OUT ALL THAT HAIR! From basically bald to flowing golden curly locks in one year). Sweet!
I wouldn't have it any other way.
Kaia, "You know, you really wear me out. But I love you anyway".
And I'm pretty sure, despite all our faults, you'd tell Daddy and Me if you could that you "love us anyway too".
Happy 2nd Birthday to my extra special girl.
*Updated to add: Go check out last year's post about her 1st birthday party. Holy Hannah (as my mother would say!), CHECK OUT ALL THAT HAIR! From basically bald to flowing golden curly locks in one year). Sweet!
Monday, July 1, 2013
Down hearted
Sorry I haven't written in awhile. It's not for lack of wanting to...just life always seems to get in the way. Plus I spent the month of June reading the entire series of Game of Thrones (books 1-5), which was over 4000 pages, so I spent a good portion of the month reading. I'm now in withdrawal...I wish the next book was coming out soon.
On to more important things.
No we aren't pregnant.
And after my cardiologist appointment this past week, I'm wondering if it's a good idea health-wise.
My heart is currently functioning well, however I do have a 'moderate' amount of aortic regurgitation which means that a portion of the blood passing through my aortic valve from my left ventricle tends to leak backwards through the valve rather than all flowing out through my aorta. Basically my cardiologist is telling me that valve surgery is in my future. She's 'hoping' I will get 10 more years out of the valve, but at some point it will need to be replaced in order to help preserve my heart function. Currently this type of valve is replaced by open heart surgery, meaning you have to be put on by-pass while your heart is stopped and worked on through a giant incision through your chest. According to my good friend Google, it has a 1-3% mortality rate (which is probably higher with Fontan patients like me). My cardiologist is hopeful that by the time I need my valve replaced it will be done by catheter, making the procedure less risky and less invasive. I'm so hoping too.
Hearing this is upsetting, although not ENTIRELY surprising. I've done my reading, and from what I've read Fontan patients usually begin having heart problems as they grow older, and valve surgery is fairly common in heart patients. It is hard to begin applying those statistics to yourself though. It's scary. If I were to get a non-tissue valve, I'll have an increased risk of clotting and will need to be on blood thinning medication indefinitely. A big annoyance and not a pleasant prospect.
However, what was worse, was that this cardiologist started telling me about the possibility that one day I may need a heart transplant. I know my parents were told when I was a child, that I was not eligible for a heart transplant and that the Fontan operation was my only option. This cardiologist is telling me that things have changed in the last 25 years, and now would be considered for a heart transplant if I needed one (yippee!), however Fontan patients like myself have a 30% chance of DYING ON THE TABLE during the surgery (definitely not yippee). If they survive post op, the outcomes are usually good...but the risks are high. It also means living on the transplant list. You can't travel, you're tied to a pager every day, wondering "will this be the day my heart arrives"...and there is the possibility that one won't be found and you'll die waiting. Also, fun fact: women who have had children have a harder time being matched due to the antibodies they have made against the fetus.
A transplant also isn't a cure all...you'll be on anti-rejection medications forever (increasing your risk of infection and cancer) and transplanted hearts fail on average around 15 years, meaning you'll either die or need another one. Only 69% of female transplant patients are alive at 5 years.
This is VERY upsetting because damn it all, I want to be an old lady. I want grey hair and wrinkles. I want to go back to school and change my career trajectory. I want to travel with my family, or alone with Brian, and one day I might even want to retire! I want to see my grandchildren grow (should I be lucky enough to have them). I want a full life, with the normal expected life span. Hearing all this stuff about my heart is making me think about my life long term. For example, I better stay in a job that has good medical benefits, good disability benefits and life insurance, because at some point, I might (will?) need them. So scratch working in a small medical clinic, I'll have to stay at a big hospital. I should also definitely get on with my plans for school. I need to move towards a career that is less physically demanding. We should also not plan to move to a smaller city. The hospital I need is here.
Those concerns are obviously all long term, and in my own benefit. In the short term, I (we) want another baby. I want a sibling for Kaia. Especially if there is a chance I might not be around to see her as an adult, I want her to have the comfort of a (living) sibling. It's so maddening because part of what has come with living so well with my heart defect, is my own expectation that I will pretty much be able to live a normal life, including having the number of children I want (or at least TRY to have the number of children I want). If I let myself be scared off trying for another child, fearing that it may damage my heart, I feel it would be tantamount to letting my heart defect stop me from achieving my dreams.
It's put a lot of thoughts in my head this week. How to I reconcile my short and long term desires? It's led me back into looking into surrogacy. Here in Canada, surrogacy is legal, however you aren't able to directly pay for a surrogate the way you are in the States. You are however, responsible for many other costs. Including, (but not limited to, of course), the IVF fees ($10,000+), the lawyers ($1000s), DNA testing ($1500) the expenses the surrogate will incur including travel costs, maternity clothes, extra food costs, and the possibility that she will need time off work which means you'll be paying her salary. The website I went to listed $35,000 as a total conservative estimate.
*Sigh*
This is all well and good, but first someone (out of the goodness of their own heart) has to offer up her uterus for 9 months. And maybe, maybe, if all goes well, you get a baby (or two?) out of the deal and the lovely woman who has helped you gets a few more stretch marks and the knowledge of a job well done.
Makes me wish my parents had tried a little harder to give me a sister (preferably one who loved me lots and liked being pregnant). My brother is fairly useless in this case. Thanks for nothing Mom and Dad. ;-)
On to more important things.
No we aren't pregnant.
And after my cardiologist appointment this past week, I'm wondering if it's a good idea health-wise.
My heart is currently functioning well, however I do have a 'moderate' amount of aortic regurgitation which means that a portion of the blood passing through my aortic valve from my left ventricle tends to leak backwards through the valve rather than all flowing out through my aorta. Basically my cardiologist is telling me that valve surgery is in my future. She's 'hoping' I will get 10 more years out of the valve, but at some point it will need to be replaced in order to help preserve my heart function. Currently this type of valve is replaced by open heart surgery, meaning you have to be put on by-pass while your heart is stopped and worked on through a giant incision through your chest. According to my good friend Google, it has a 1-3% mortality rate (which is probably higher with Fontan patients like me). My cardiologist is hopeful that by the time I need my valve replaced it will be done by catheter, making the procedure less risky and less invasive. I'm so hoping too.
Hearing this is upsetting, although not ENTIRELY surprising. I've done my reading, and from what I've read Fontan patients usually begin having heart problems as they grow older, and valve surgery is fairly common in heart patients. It is hard to begin applying those statistics to yourself though. It's scary. If I were to get a non-tissue valve, I'll have an increased risk of clotting and will need to be on blood thinning medication indefinitely. A big annoyance and not a pleasant prospect.
However, what was worse, was that this cardiologist started telling me about the possibility that one day I may need a heart transplant. I know my parents were told when I was a child, that I was not eligible for a heart transplant and that the Fontan operation was my only option. This cardiologist is telling me that things have changed in the last 25 years, and now would be considered for a heart transplant if I needed one (yippee!), however Fontan patients like myself have a 30% chance of DYING ON THE TABLE during the surgery (definitely not yippee). If they survive post op, the outcomes are usually good...but the risks are high. It also means living on the transplant list. You can't travel, you're tied to a pager every day, wondering "will this be the day my heart arrives"...and there is the possibility that one won't be found and you'll die waiting. Also, fun fact: women who have had children have a harder time being matched due to the antibodies they have made against the fetus.
A transplant also isn't a cure all...you'll be on anti-rejection medications forever (increasing your risk of infection and cancer) and transplanted hearts fail on average around 15 years, meaning you'll either die or need another one. Only 69% of female transplant patients are alive at 5 years.
This is VERY upsetting because damn it all, I want to be an old lady. I want grey hair and wrinkles. I want to go back to school and change my career trajectory. I want to travel with my family, or alone with Brian, and one day I might even want to retire! I want to see my grandchildren grow (should I be lucky enough to have them). I want a full life, with the normal expected life span. Hearing all this stuff about my heart is making me think about my life long term. For example, I better stay in a job that has good medical benefits, good disability benefits and life insurance, because at some point, I might (will?) need them. So scratch working in a small medical clinic, I'll have to stay at a big hospital. I should also definitely get on with my plans for school. I need to move towards a career that is less physically demanding. We should also not plan to move to a smaller city. The hospital I need is here.
Those concerns are obviously all long term, and in my own benefit. In the short term, I (we) want another baby. I want a sibling for Kaia. Especially if there is a chance I might not be around to see her as an adult, I want her to have the comfort of a (living) sibling. It's so maddening because part of what has come with living so well with my heart defect, is my own expectation that I will pretty much be able to live a normal life, including having the number of children I want (or at least TRY to have the number of children I want). If I let myself be scared off trying for another child, fearing that it may damage my heart, I feel it would be tantamount to letting my heart defect stop me from achieving my dreams.
It's put a lot of thoughts in my head this week. How to I reconcile my short and long term desires? It's led me back into looking into surrogacy. Here in Canada, surrogacy is legal, however you aren't able to directly pay for a surrogate the way you are in the States. You are however, responsible for many other costs. Including, (but not limited to, of course), the IVF fees ($10,000+), the lawyers ($1000s), DNA testing ($1500) the expenses the surrogate will incur including travel costs, maternity clothes, extra food costs, and the possibility that she will need time off work which means you'll be paying her salary. The website I went to listed $35,000 as a total conservative estimate.
*Sigh*
This is all well and good, but first someone (out of the goodness of their own heart) has to offer up her uterus for 9 months. And maybe, maybe, if all goes well, you get a baby (or two?) out of the deal and the lovely woman who has helped you gets a few more stretch marks and the knowledge of a job well done.
Makes me wish my parents had tried a little harder to give me a sister (preferably one who loved me lots and liked being pregnant). My brother is fairly useless in this case. Thanks for nothing Mom and Dad. ;-)
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