I previously blogged about my thoughts on birth control and why it was medically necessary for me. Now that I've had a hysterectomy, I no longer have to worry about those issues--for myself, anyway. Unfortunately, I find myself confronted by an even larger worry looming on the horizon--how birth control options and access, and abortion restrictions will affect my daughter. Yes, I know, she's only 3 (almost 4). I can hear your incredulity. However, I want to talk about this because I want to provide another perspective to the social discussion on sex, birth control, and abortion--one that highlights why this issue is much more complex than many of the people making the decisions about it are considering.
So, why am I talking about birth control and abortion with respect to my preschooler? First, because I started menstruating at 9, so we are easily a mere five years away from her being able to get pregnant. Do I anticipate her having sex at that age? Heck no! But, I am a realist and know it happens--my mother taught a 7th grader with three children! I will do what I can to educate her and impress upon her that the repercussions of this decision is even more weighty for her than her peers. Nevertheless, I cannot control the world, so I have to consider that she could be sexually assaulted, like I was at age six.
I imagine you are thinking, "But that's true for everyone. What's the big deal?" The big deal is, for most people, pregnancy is not a death sentence. Given her unique anatomy and PAH, a pregnancy will likely kill my daughter. Her body won't be able to handle the increased blood flow and lung function necessary for a baby to grow, let alone tolerate labor and birth. And, even if she somehow survived pregnancy, the medications she takes for her heart condition are contraindicated for pregnancy; indeed, one of them is a black box drug that causes severe birth defects. Unfortunately, it also cannot be used in conjunction with hormonal birth control.
Given that most states are passing abortion restrictions that don't include rape or health of the mother exceptions, I cannot simply hope that it won't happen to her. Under these conditions, I feel I must take a proactive approach to keep her safe. So, how do I protect my daughter? Since hormonal birth control is out, and most of the other forms require reliance on the other party or aren't effective enough, in my opinion, when death is the alternative, I will likely get her an IUD. The only other more effective alternative would be to sterilize her and that's not going to happen--medicine advances all the time, and it's possible something could change in the future that would make her able to safely carry a pregnancy. Given my own struggle with infertility, I am not going to do that to her.
I get how crazy it is to be talking about getting an IUD for my child. Still, I can't think of any other acceptable options. Not when the alternative--whether by mistake or violation--is a death sentence. I'm not telling you all of this to get you to change your beliefs or your position on these issues. Instead, I'm simply offering you the background to understand why my position is pro-access, pro-choice.
Showing posts with label risk. Show all posts
Showing posts with label risk. Show all posts
4.13.2014
The Million Dollar Question
Part of human nature is to second-guess ourselves. We spend a great deal of time wondering "what-if." We look back with the knowledge of today on decisions made when we were less informed and berate ourselves for the choices we made or opportunitites missed. I thought about this a lot this week while I was at the hospital with Jellybean.
This time last week, I was barrelling down the freeway, headed for Detroit to take Jellybean to the ER. He had been lethargic all day and started to have difficulty breathing. During the wee hours of the morning, they admitted him and, ultimately, determined he had bronchiolitis. He was placed on oxygen while they assessed him. His cough got worse, and he began vomiting worse than usual. With the vomiting came dehydration, so they hooked him up to an IV to make sure he had enough fluid to keep his shunt working.
Over the course of the next four days, Phil and I both caught a horrendous stomach virus. FYI: Juggling one healthy child is hard enough when you are sick--two, one of whom is in the hospital, presents more challenges. Trying to pump and get milk to Jellybean when I was queasy, dehydrated, and not allowed to visit in case I was contagious--that was a whole new level of difficulty I didn't need to know about. Fun times! Ultimately, he got released once he was off oxygen and holding feeds down. Of course, since his first feed home, he's been vomiting again. We can't seem get enough food in him to keep up his calorie count, but at least we get enough in to keep him hydrated. I have struggled this weekend with whether to take him back, but I worry he is more likely to catch something else at the hospital, so I am erring on the side of keeping him at home.
Of course, this week is Holy Week. Having entered what is arguably the busiest week in the church calendar, finding time for all the doctor visits we already had scheduled, plus those we missed last week that need to be rescheduled, and new ones to check up on how he's doing, is not easy. I totally understand how parents end up quitting work. Taking care of special needs children is a full-time job. And that's been frustrating for me. I worked hard to become a lawyer, and I would like to use the degree I'm still paying for. But more than that, I LOVE my job and my coworkers. Even if, financially, I could give it up, I don't want to. And so I struggle to do it all. My house isn't as clean as I would like. We eat way too much junk food, which is catching up to me (but that's a story for another time). My life is one big ball of chaos.
So, as I sat in the hospital, holding a restless infant who was hooked up to dozens of wires in one hand, I surfed the internet with the other. I don't remember where I saw it, or who wrote it, but I read a blog post written by a parent who was asked by a friend if having children was worth it. It reminded me of back when we were first discussing whether we wanted children--long before we knew about the infertility, the CHDs, or anything else. Back when we weren't sure if we even wanted run-of-the-mill "regular" kids. I closed my eyes and asked myself the million-dollar question: If I could do it all again, knowing what I know now, would I?
The joy of watching my children grow; watching them learn; feeling that first hug; hearing that first "I love you, mommy." Experiencing all of those beautiful moments, knowing the joy and strength they give me, my heart says "of course I would." But, at the same time, if I am being honest, I can tell you that, if I had been told at the outset that I would have two children who needed open-heart surgery, I would have opted for a child-free life. I would not have known that I had it in me to survive this stuff. I would never have believed it of myself. But, making the decision with the knowledge I have now would require me to balance those disparate things--the joy and amazement with the extreme difficulties--and I have no idea, even with hindsight, how I would have weighed those experiences against each other and what decision I would have reached.
What I do know is that I love my children with all my heart, and I will be the best mother I can to them, for however long I get to have them. And, I am grateful that we don't get to know everything before making big decisions because I might have decided not to have kids, and I would have missed out on some amazing moments. What I learned from the million-dollar question was not whether children were the right decision. I learned that a life worth living is a life with risk. Without risk, there is no challenge to overcome, and, without challenge, there is no growth. I don't like it. As a risk-averse person, I will probably always struggle with it. It doesn't make it any less true. I will try to remember it, the next time I "wish I had known..."
5.26.2012
One Last Ride
Well, it's official. We've signed up to take one last ride on the IVF rollercoaster. We've decided not to try until September because otherwise, either the shots, the procedure, or the due date would interfere with something else already on the calendar. And, since we get to pick, why the heck not make it most convenient for us, right?
So, you probably have some questions. Like, what made us decide we wanted to try again? Or perhaps, how do you know it will be the last time? Fortunately, we have some answers we're willing to share. So, here goes.
When we did the FET (frozen embryo transfer) last time, we pretty much agreed that we would get what we get and be done. So, if I didn't get pregnant, we would stop, but if we did, then we'd have however many kids we got and call it a day. We hadn't planned on there being another alternative. But, there was. I can't speak for Phil, but for me, getting pregnant and then losing Oliver only made me really want to try again. As heavy as the loss hit me, I knew that I wanted another child. I reached my decision long before Phil did. But, since this really isn't a solo endeavor, he had to be on board. Otherwise, we weren't doing it again. I was smart enough not to try to get a decision out of him during Lent/Easter or the few weeks thereafter. But after that, we started to talk about where we were. One problem both of us had was that we were so exhausted by Lil' Bit and the rest of our lives, we couldn't imagine having any energy for another child. Then, as you may recall, I discovered anti-depressants. Oh, brother! I suddenly had energy for me, for Lil' Bit, for work, and some left over. It was a freaking miracle as far as I was concerned. Suddenly, I felt like I could handle another one. At some point, Phil reached the same conclusion, and we moved forward and got our names on the calendar.
Another factor that played in to this decision for me was Lil' Bit's condition. I finally broke down and asked her doctors what they thought her life expectancy was. Obviously, because of her conditions, there is no real group of people to compare her with, but they both said the same thing. Given how great she's doing and the fact that she has never showed any symptoms, they don't see any reason at this point why she won't grow to adulthood. This was very important to me. I didn't want to be having a potential "replacement" child, and I didn't want a child that would feel second-banana to a sick older sibling. I also didn't think I could bring a child into the world knowing that they were going to have to experience the loss of their sibling. Certainly, there is no guarantee. There are many ways to lose a child, even a healthy one, long before they reach adulthood. But that risk is inherent with all children and not unique to Lil' Bit. So, it's one I was willing to accept.
And now we reach the million dollar question--how do we know this will be our last round. Well, several reasons. First, I am not willing to undergo another "fresh" cycle. The cost monetarily, physically, and emotionally are more than I am willing to endure. So what, you say. You have seven frozen embryos left and you're only going to use two. True. But, given Lil' Bit's congenital defect and the high likelihood that Oliver miscarried because of a genetic abnormality, and given that the clinic always uses the best and strongest embryos each time, chances of a viable pregnancy with the remaining five would be slimmer each time. Don't get me wrong. There are people who utilize each and every one and get healthy pregnancies with "lower" grade embryos. It's not a given. But it's a percentages game and it's one I'm not willing to play. So, this would be the last round I would want to use the frozens and I'm not willing to do another fresh. (And, in case you're wondering, provided that the clinic is willing to accept them, our plan is to donate the remaining ones for others to use.)
More than that, though, is that whatever result we get, we'll be emotionally and physically done. There are three possible results: no pregnancy; miscarriage; baby. If I don't get pregnant, we'd be looking at another procedure. Even if we did another FET, there is a high physical and emotional cost and I'm not getting any younger. As I creep closer to 40 and with Phil being five years older than I, it doesn't seem right to spend more assets on attempts for children that, if successful, would result in their reaching college age around the time we want to retire and, if not successful, simply depletes our assets when we have a child who requires ongoing medical care. If we miscarry again, I will be done. There is no way I could put myself through that again. And any new attempt would invariably have that risk. I am willing to take that risk once more, but that's all I can take. Finally, if we get pregnant and have a baby (or babies), we'll be done. We will have achieved our goal. No reason to do it again. Finally, attendant with each of these decisions is also the fact that, once we're done, I can finally have my hysterectomy and stop having all these problems.
So there you have it. Why we decided to try again, but why this will be our last try. Welcome to our one last ride. Come along and join the fun.
So, you probably have some questions. Like, what made us decide we wanted to try again? Or perhaps, how do you know it will be the last time? Fortunately, we have some answers we're willing to share. So, here goes.
When we did the FET (frozen embryo transfer) last time, we pretty much agreed that we would get what we get and be done. So, if I didn't get pregnant, we would stop, but if we did, then we'd have however many kids we got and call it a day. We hadn't planned on there being another alternative. But, there was. I can't speak for Phil, but for me, getting pregnant and then losing Oliver only made me really want to try again. As heavy as the loss hit me, I knew that I wanted another child. I reached my decision long before Phil did. But, since this really isn't a solo endeavor, he had to be on board. Otherwise, we weren't doing it again. I was smart enough not to try to get a decision out of him during Lent/Easter or the few weeks thereafter. But after that, we started to talk about where we were. One problem both of us had was that we were so exhausted by Lil' Bit and the rest of our lives, we couldn't imagine having any energy for another child. Then, as you may recall, I discovered anti-depressants. Oh, brother! I suddenly had energy for me, for Lil' Bit, for work, and some left over. It was a freaking miracle as far as I was concerned. Suddenly, I felt like I could handle another one. At some point, Phil reached the same conclusion, and we moved forward and got our names on the calendar.
Another factor that played in to this decision for me was Lil' Bit's condition. I finally broke down and asked her doctors what they thought her life expectancy was. Obviously, because of her conditions, there is no real group of people to compare her with, but they both said the same thing. Given how great she's doing and the fact that she has never showed any symptoms, they don't see any reason at this point why she won't grow to adulthood. This was very important to me. I didn't want to be having a potential "replacement" child, and I didn't want a child that would feel second-banana to a sick older sibling. I also didn't think I could bring a child into the world knowing that they were going to have to experience the loss of their sibling. Certainly, there is no guarantee. There are many ways to lose a child, even a healthy one, long before they reach adulthood. But that risk is inherent with all children and not unique to Lil' Bit. So, it's one I was willing to accept.
And now we reach the million dollar question--how do we know this will be our last round. Well, several reasons. First, I am not willing to undergo another "fresh" cycle. The cost monetarily, physically, and emotionally are more than I am willing to endure. So what, you say. You have seven frozen embryos left and you're only going to use two. True. But, given Lil' Bit's congenital defect and the high likelihood that Oliver miscarried because of a genetic abnormality, and given that the clinic always uses the best and strongest embryos each time, chances of a viable pregnancy with the remaining five would be slimmer each time. Don't get me wrong. There are people who utilize each and every one and get healthy pregnancies with "lower" grade embryos. It's not a given. But it's a percentages game and it's one I'm not willing to play. So, this would be the last round I would want to use the frozens and I'm not willing to do another fresh. (And, in case you're wondering, provided that the clinic is willing to accept them, our plan is to donate the remaining ones for others to use.)
More than that, though, is that whatever result we get, we'll be emotionally and physically done. There are three possible results: no pregnancy; miscarriage; baby. If I don't get pregnant, we'd be looking at another procedure. Even if we did another FET, there is a high physical and emotional cost and I'm not getting any younger. As I creep closer to 40 and with Phil being five years older than I, it doesn't seem right to spend more assets on attempts for children that, if successful, would result in their reaching college age around the time we want to retire and, if not successful, simply depletes our assets when we have a child who requires ongoing medical care. If we miscarry again, I will be done. There is no way I could put myself through that again. And any new attempt would invariably have that risk. I am willing to take that risk once more, but that's all I can take. Finally, if we get pregnant and have a baby (or babies), we'll be done. We will have achieved our goal. No reason to do it again. Finally, attendant with each of these decisions is also the fact that, once we're done, I can finally have my hysterectomy and stop having all these problems.
So there you have it. Why we decided to try again, but why this will be our last try. Welcome to our one last ride. Come along and join the fun.
3.22.2012
Frustrated Expectations and Tough Choices
So today we took Lil' Bit to the cardiologist for another echocardiogram. Although her pressures were slightly elevated from earlier, it was generally the same--in December Dr. S got 42 and Dr. R got 48 and today Dr. S got 49. Still better than the 60s she was at, but 20 is normal. So, what does that mean? I asked what purpose the meds served if the pressures weren't going down. The answer was that they may be what's keeping her pressures at the level they are currently at. So, instead of her having a heart cath this November and getting weaned off her meds, she's going to get a full-sedation echo this December and a heart cath next November when she's three. That means we have to keep medicating her 6 times a day for at least the next 18 months.
The difficulty is that it's extremely hard to do anything when your child needs meds at 5, 6, 10, 2, 5 and 6, and it's extremely hard to find babysitters who you trust to medicate your child properly and timely. It makes scheduling trips and just figuring out how to get in nap time and meal times really difficult. Although we still plan to make our scheduled trips this year, it's going to take a lot more planning.
Don't get me wrong. The fact that her pressures haven't increased is great news, and I'm lucky that there are meds that keep her healthy. I just had thought the light at the end of the tunnel was this November and now it's been pushed out a year, with no guarantee that that's the end either.
And so, as I drove home today from the doctor's office, I asked myself several questions to which there are no easy answers. We had attempted to schedule my pregnancy with Oliver so that I would be due after everything was done with Lil' Bit. Now that the end won't come until almost 2014--if at all--are we willing to try having another child in the midst of all this craziness? Can I take the risk of having another child knowing that, at least currently, I lack the capacity to cope if the next one also has medical issues? How long do I have the patience and ability to wait while we try and figure out the answer to these questions? The longer we wait, the older I get; the more we pay for embryo storage fees; the longer we make our child-raising years; and the longer we delay my hysterectomy.
I know that I don't have to (and shouldn't) make any decisions today. But if I had to, I would say that I've hit my squeal point. I think Lil' Bit will have to be enough. I just don't have it in me right now to cope with pregnancy and Lil' Bit's meds and the lack of a guarantee on the health of any subsequent baby. And that makes me even more sad. Because I feel like I've lost everything all over again. I am overwhelmed. I am tired. I feel like a complete failure. I feel like I just can't catch a break and the world is dumping on me and I don't know why. It sucks. And all I can do, is just keep going. Because really, at some point, I have to reach a tomorrow that is better. I just hope it's sooner rather than later.
The difficulty is that it's extremely hard to do anything when your child needs meds at 5, 6, 10, 2, 5 and 6, and it's extremely hard to find babysitters who you trust to medicate your child properly and timely. It makes scheduling trips and just figuring out how to get in nap time and meal times really difficult. Although we still plan to make our scheduled trips this year, it's going to take a lot more planning.
Don't get me wrong. The fact that her pressures haven't increased is great news, and I'm lucky that there are meds that keep her healthy. I just had thought the light at the end of the tunnel was this November and now it's been pushed out a year, with no guarantee that that's the end either.
And so, as I drove home today from the doctor's office, I asked myself several questions to which there are no easy answers. We had attempted to schedule my pregnancy with Oliver so that I would be due after everything was done with Lil' Bit. Now that the end won't come until almost 2014--if at all--are we willing to try having another child in the midst of all this craziness? Can I take the risk of having another child knowing that, at least currently, I lack the capacity to cope if the next one also has medical issues? How long do I have the patience and ability to wait while we try and figure out the answer to these questions? The longer we wait, the older I get; the more we pay for embryo storage fees; the longer we make our child-raising years; and the longer we delay my hysterectomy.
I know that I don't have to (and shouldn't) make any decisions today. But if I had to, I would say that I've hit my squeal point. I think Lil' Bit will have to be enough. I just don't have it in me right now to cope with pregnancy and Lil' Bit's meds and the lack of a guarantee on the health of any subsequent baby. And that makes me even more sad. Because I feel like I've lost everything all over again. I am overwhelmed. I am tired. I feel like a complete failure. I feel like I just can't catch a break and the world is dumping on me and I don't know why. It sucks. And all I can do, is just keep going. Because really, at some point, I have to reach a tomorrow that is better. I just hope it's sooner rather than later.
9.09.2011
A Broken Heart
We encounter risk everyday. Every single choice we make or action we take involves risk. There's risk of injury, emotional pain, embarrassment, and failure, to name a few. Still, we get up each day and walk, eat, drive, work, and put ourselves out there. We take and accept these risks for ourselves often without conscious thought. Other risks we only take after careful thought. The risk inherent in medical care is one such risk. Generally, however, so long as you trust your healthcare provider, this level of risk is generally acceptable. So it was with some surprise that I found that the same is not true when it comes to my child.
Lil' Bit's cardiologist recommended that she have a heart catheterization to measure the pressures in her heart to determine if her VSD needed to be closed. He also indicated that during the test they could look to see whether she had any segment of left pulmonary artery that they could work with to try and attach a stent, get blood flow to the left lung, and see if it would grow. Now, if my doctor told me I needed a heart cath, I would, without reservation, recognize that it is a common procedure and that the risks were outweighed by the benefits and have the test done. Having to agree that doctors could perform the test on my daughter was not as simple. It had the same risks and benefits--indeed, perhaps greater benefits in her case given her situation--and yet the risks seemed too high. As a parent, there are times that any risk seems too high. Fortunately, I recognized the irrationality and emotional basis of this position and overcame my reluctance to have her get the procedure.
And so it was that earlier this week, we took Lil' Bit to the "big city" to have a heart cath done. It was scary, but we managed to get through it. She did great and came out of the test none the worse for wear. However, the results weren't what we had hoped. The pressures in her heart need to be taken care of, so they want to schedule her for open heart surgery sometime before Thanksgiving. In addition, there is nothing left of the left pulmonary artery to work with. Her right lung is doing all of the oxygenation at this point--in fact it is larger than normal, where the left one is smaller than normal. The left lung isn't doing anything, which means that sometime down the road she will likely have to have it removed. More surgery. My heart breaks each time I have to think about Lil' Bit having to go under the knife at such a young age. I know that she is unlikely to remember any of this, which also means that she likely has no stress or anxiety leading up to the procedures (unlike her parents). It doesn't make things any easier.
It reminds me of my own fragility and makes me wonder whether I can put myself out there and risk heartbreak with another child. My only consolation is that we elected to wait to go through another round of IVF until we learned what Lil' Bit's prognosis was. Don't get me wrong, she has a great prognosis. They feel confident in the surgery and, given her body's shown ability to adapt and compensate, see no long term issues related to her missing left pulmonary artery except the chance that she won't have as much "reserve" as those two-lunged folks. Even with the good prognosis, however, I am fairly certain that I would not be handling all of this information nearly as well if I were hyped up on fertility or pregnancy hormones.
Ultimately, this week boils down to two simple facts. The surgeon should be able to fix Lil' Bit's broken heart, but mine will break in the process. Such is the nature and sacrifice of parenthood, I suppose, but I was wholly unprepared for it all the same.
Lil' Bit's cardiologist recommended that she have a heart catheterization to measure the pressures in her heart to determine if her VSD needed to be closed. He also indicated that during the test they could look to see whether she had any segment of left pulmonary artery that they could work with to try and attach a stent, get blood flow to the left lung, and see if it would grow. Now, if my doctor told me I needed a heart cath, I would, without reservation, recognize that it is a common procedure and that the risks were outweighed by the benefits and have the test done. Having to agree that doctors could perform the test on my daughter was not as simple. It had the same risks and benefits--indeed, perhaps greater benefits in her case given her situation--and yet the risks seemed too high. As a parent, there are times that any risk seems too high. Fortunately, I recognized the irrationality and emotional basis of this position and overcame my reluctance to have her get the procedure.
And so it was that earlier this week, we took Lil' Bit to the "big city" to have a heart cath done. It was scary, but we managed to get through it. She did great and came out of the test none the worse for wear. However, the results weren't what we had hoped. The pressures in her heart need to be taken care of, so they want to schedule her for open heart surgery sometime before Thanksgiving. In addition, there is nothing left of the left pulmonary artery to work with. Her right lung is doing all of the oxygenation at this point--in fact it is larger than normal, where the left one is smaller than normal. The left lung isn't doing anything, which means that sometime down the road she will likely have to have it removed. More surgery. My heart breaks each time I have to think about Lil' Bit having to go under the knife at such a young age. I know that she is unlikely to remember any of this, which also means that she likely has no stress or anxiety leading up to the procedures (unlike her parents). It doesn't make things any easier.
It reminds me of my own fragility and makes me wonder whether I can put myself out there and risk heartbreak with another child. My only consolation is that we elected to wait to go through another round of IVF until we learned what Lil' Bit's prognosis was. Don't get me wrong, she has a great prognosis. They feel confident in the surgery and, given her body's shown ability to adapt and compensate, see no long term issues related to her missing left pulmonary artery except the chance that she won't have as much "reserve" as those two-lunged folks. Even with the good prognosis, however, I am fairly certain that I would not be handling all of this information nearly as well if I were hyped up on fertility or pregnancy hormones.
Ultimately, this week boils down to two simple facts. The surgeon should be able to fix Lil' Bit's broken heart, but mine will break in the process. Such is the nature and sacrifice of parenthood, I suppose, but I was wholly unprepared for it all the same.
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