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Tuesday, May 12, 2015
Violet-8 months
Now's the time.
We went to see Violet's orthopedic surgeon last week and now's the time that we need to make a final decision about her treatment. She is starting to pull up to stand, and proving to us that she wants to walk soon, so we need to make a way for her to do that. I say this now, but in reality we have been fairly certain about our decision since the first time we saw her doctor.
Let me go into a little bit of an explanation about the severity of her condition before I explain the reasons for our decision. Violet has a complete absence of both fibulas, which in itself is not at the center of our decision because it doesn't have as much impact as the structure of her ankles and feet. The fibula is the big bone on the outside of your ankle that you see poking out, so obviously the absence affects the ankle joint, but functionally it's not as important as a well-structured foot. Violet is also missing a lot of the other bones in her ankles and feet. Her doctor refers to this as a "partial foot." You can understand that this also means her feet do not function the way a normal foot is supposed to. Her left foot is more severe, consisting of two tiny little toes basically sticking out of her leg, no ankle, not much there. That is the one that we can be 100% sure that she will never be able to use. Her right is slightly more structured in that it appears to have an ankle and three toes, but that ankle is not functional. The reason is that the tendons in her ankle are so tight that her foot is stuck very stiffly in a position where the bottom of her foot is twisted in an upward-facing position. When she stands on this foot she stands mostly on the end of her leg and top of her foot. The doctor says that when there's that amount of structure there, it can be a big question of whether the foot will be functional or just a hindrance to the child. In Violet's case, trying to correct the foot into a position that is usable for her is probably not going to work. If she had more mobility in the foot to begin with, things might be different. If we really pushed, I'm sure we could find a doctor that would attempt corrective surgery on this foot. But results are never guaranteed and we don't see very good chances of these surgeries working for her.
Now let me explain what a "worst case scenario" might look like for us. A lot of people seem to think that amputation of a child's foot is the worst case scenario. But to me, as her mother, this is what the worst case scenario looks like:
We amputate her left foot and get her a prosthetic because there really isn't another option for that one. We go into the process of attempting reconstructive surgeries on her right foot. (I have a problem with this term because "reconstructing" infers that there was something there to begin with, when in reality she doesn't have much to start with.) So this process, in reality, may require 10, 20, 30 surgeries (we really have no idea how many it would be). There's no knowing whether all of these surgeries would result in a functional foot. Basically, we would be putting her through A LOT for the small chance that she could have a fleshy, less functional foot, when there's a 100% chance that we could give her a plastic, well-functioning foot. Imagine the amount of time spent in the hospital for a child who goes through that many surgeries. Imagine the amount of pain that child goes through. Imagine that after all that surgery, chronic pain is very likely! MY worst case scenario, as her mother, is just that! Seeing my baby in pain, and for what reason? So that her foot looks somewhat more normal because it has human skin on it? Her foot has three toes on it, so it wouldn't look normal anyways. And the looks of her feet doesn't matter to us as much as her ability to use them. Anyways, if we did choose that option, in all likelihood she could choose to have her own amputation once she's old enough to make that decision. Yes-this happens!
So, we have chosen amputation for both feet. We believe this to be the best thing for her, and frankly, I would be offended if anybody thought we were the type of parents that would settle for anything less than the absolute best for our child. We also believe that we have found very good doctors for her, ones that are both knowledgable and caring, so that they will give us the very best advice that they can and will do what they think is best for her. We trust her doctors and the advice that they've given us. No, we do not take their words and follow them blindly. We obviously would not take the decision to amputate limbs lightly. But we have taken their advice and used it in our decision. We've prayed about it and we've talked about it and we've tried to follow what our hearts tell us.
Another advantage to the amputation of both feet is that she will be symmetrical on both sides. This will come in handy because she'll be able to walk without prosthetic feet on. Yes-she'll be able to walk around on her stumps. With one foot and one stump, there will be a length difference that may hurt her back when she's walking without her prosthesis on. This wasn't a factor in our decision, just an added bonus.
If you still think that amputation is the worst case scenario, I encourage you to look up some amputees online. There are a lot of child amputees around the world that are just like any other kid. They walk, run, play, and play sports to any degree that they desire. There are athletes all over the world who are amputees as well (remember Oscar Pistorius?), actresses, super models, and of course veterans that go on "Dancing with the Stars". She will be able to do whatever it is she wants to, and she will make us very proud!
Let me go into a little bit of an explanation about the severity of her condition before I explain the reasons for our decision. Violet has a complete absence of both fibulas, which in itself is not at the center of our decision because it doesn't have as much impact as the structure of her ankles and feet. The fibula is the big bone on the outside of your ankle that you see poking out, so obviously the absence affects the ankle joint, but functionally it's not as important as a well-structured foot. Violet is also missing a lot of the other bones in her ankles and feet. Her doctor refers to this as a "partial foot." You can understand that this also means her feet do not function the way a normal foot is supposed to. Her left foot is more severe, consisting of two tiny little toes basically sticking out of her leg, no ankle, not much there. That is the one that we can be 100% sure that she will never be able to use. Her right is slightly more structured in that it appears to have an ankle and three toes, but that ankle is not functional. The reason is that the tendons in her ankle are so tight that her foot is stuck very stiffly in a position where the bottom of her foot is twisted in an upward-facing position. When she stands on this foot she stands mostly on the end of her leg and top of her foot. The doctor says that when there's that amount of structure there, it can be a big question of whether the foot will be functional or just a hindrance to the child. In Violet's case, trying to correct the foot into a position that is usable for her is probably not going to work. If she had more mobility in the foot to begin with, things might be different. If we really pushed, I'm sure we could find a doctor that would attempt corrective surgery on this foot. But results are never guaranteed and we don't see very good chances of these surgeries working for her.
Now let me explain what a "worst case scenario" might look like for us. A lot of people seem to think that amputation of a child's foot is the worst case scenario. But to me, as her mother, this is what the worst case scenario looks like:
We amputate her left foot and get her a prosthetic because there really isn't another option for that one. We go into the process of attempting reconstructive surgeries on her right foot. (I have a problem with this term because "reconstructing" infers that there was something there to begin with, when in reality she doesn't have much to start with.) So this process, in reality, may require 10, 20, 30 surgeries (we really have no idea how many it would be). There's no knowing whether all of these surgeries would result in a functional foot. Basically, we would be putting her through A LOT for the small chance that she could have a fleshy, less functional foot, when there's a 100% chance that we could give her a plastic, well-functioning foot. Imagine the amount of time spent in the hospital for a child who goes through that many surgeries. Imagine the amount of pain that child goes through. Imagine that after all that surgery, chronic pain is very likely! MY worst case scenario, as her mother, is just that! Seeing my baby in pain, and for what reason? So that her foot looks somewhat more normal because it has human skin on it? Her foot has three toes on it, so it wouldn't look normal anyways. And the looks of her feet doesn't matter to us as much as her ability to use them. Anyways, if we did choose that option, in all likelihood she could choose to have her own amputation once she's old enough to make that decision. Yes-this happens!
So, we have chosen amputation for both feet. We believe this to be the best thing for her, and frankly, I would be offended if anybody thought we were the type of parents that would settle for anything less than the absolute best for our child. We also believe that we have found very good doctors for her, ones that are both knowledgable and caring, so that they will give us the very best advice that they can and will do what they think is best for her. We trust her doctors and the advice that they've given us. No, we do not take their words and follow them blindly. We obviously would not take the decision to amputate limbs lightly. But we have taken their advice and used it in our decision. We've prayed about it and we've talked about it and we've tried to follow what our hearts tell us.
Another advantage to the amputation of both feet is that she will be symmetrical on both sides. This will come in handy because she'll be able to walk without prosthetic feet on. Yes-she'll be able to walk around on her stumps. With one foot and one stump, there will be a length difference that may hurt her back when she's walking without her prosthesis on. This wasn't a factor in our decision, just an added bonus.
If you still think that amputation is the worst case scenario, I encourage you to look up some amputees online. There are a lot of child amputees around the world that are just like any other kid. They walk, run, play, and play sports to any degree that they desire. There are athletes all over the world who are amputees as well (remember Oscar Pistorius?), actresses, super models, and of course veterans that go on "Dancing with the Stars". She will be able to do whatever it is she wants to, and she will make us very proud!
Sunday, December 21, 2014
Thank you.
This time of year, I see a lot of the Facebook posts that say "It was a great year, thank you for being a part of it."
This year has not been so great for a lot of people, including us. Yes, almost exactly a year ago (December 23rd, 2013), we found out we were going to have one of our biggest blessings. But I spent a lot of time in fear that we would lose our baby like we lost our other two angels. And even though I didn't lose this pregnancy, I went through the loss of something that was much more difficult for me. In April of this year (and the following 5 months) I grieved the loss of a "normal" pregnancy and having a "normal" baby. From being around so many mothers and babies, I know that mothers grieve the loss of many things. Yes, there is pregnancy loss and the kind of loss that I suffered. Some mothers even grieve over the loss of having the delivery they wanted, or the loss of being able to breastfeed their baby. But not all of these mothers are as lucky as I am.
I've had endless support and prayer from amazing family, friends and awesome doctors. And so I want to say that even though this was the most difficult year of my life, thank you for being a part of it!
This year has not been so great for a lot of people, including us. Yes, almost exactly a year ago (December 23rd, 2013), we found out we were going to have one of our biggest blessings. But I spent a lot of time in fear that we would lose our baby like we lost our other two angels. And even though I didn't lose this pregnancy, I went through the loss of something that was much more difficult for me. In April of this year (and the following 5 months) I grieved the loss of a "normal" pregnancy and having a "normal" baby. From being around so many mothers and babies, I know that mothers grieve the loss of many things. Yes, there is pregnancy loss and the kind of loss that I suffered. Some mothers even grieve over the loss of having the delivery they wanted, or the loss of being able to breastfeed their baby. But not all of these mothers are as lucky as I am.
I've had endless support and prayer from amazing family, friends and awesome doctors. And so I want to say that even though this was the most difficult year of my life, thank you for being a part of it!
Saturday, December 20, 2014
A note for my Violet.
When Violet is old enough, I want her to be able to read this blog and try to understand how much I care for her and how I don't regret a single moment that she's been in our lives. Our journey with her has been difficult, sometimes unbearably painful, but our world is also so much more beautiful with her in it, and now that she's here I couldn't imagine going one day without her in my life.
My precious Violet,
You've only been here for 3 short months, plus the 9 long ones that you were in my belly. I truly believe that you were meant to accomplish such great things, and live such a beautiful life. But even if nothing else, you have already taught me so much, and it's more than most people will do in their lifetime.
Firstly, you've taught me so see the beauty in all of God's creations.
You've taught me to love wholly, completely, and recklessly. Without any fear of getting hurt.
You've taught me how to be truly and completely grateful. Even when my heart feels broken and I don't know what to do with all the pain that I feel. I still feel like the luckiest person on this planet!
You've taught me that compassion cannot exist without pain.
And most of all, you've taught me the true meaning of perfection.
You are so loved, my beautiful girl. And I hope that one day you are able to see in yourself all that I see. You are amazing and more beautiful than I can put into words.
My precious Violet,
You've only been here for 3 short months, plus the 9 long ones that you were in my belly. I truly believe that you were meant to accomplish such great things, and live such a beautiful life. But even if nothing else, you have already taught me so much, and it's more than most people will do in their lifetime.
Firstly, you've taught me so see the beauty in all of God's creations.
You've taught me to love wholly, completely, and recklessly. Without any fear of getting hurt.
You've taught me how to be truly and completely grateful. Even when my heart feels broken and I don't know what to do with all the pain that I feel. I still feel like the luckiest person on this planet!
You've taught me that compassion cannot exist without pain.
And most of all, you've taught me the true meaning of perfection.
You are so loved, my beautiful girl. And I hope that one day you are able to see in yourself all that I see. You are amazing and more beautiful than I can put into words.
Tuesday, September 30, 2014
Our precious Violet is here!
It's taken a while for me to write this post, since we had a baby and moved to a new city just three weeks later. It's been crazy busy (and still is) but I want to write down Violet's birth story.
Towards the end of my pregnancy my doctor (who is amazing) suggested that we induce at the 39th week of pregnancy. Although I have my own reasons for thinking that waiting for natural labor is better, she had some good reasons as well. The main reason was that we could choose to induce on a day that she could be there. She could also inform the staff working that day that Violet has a birth defect that is solely orthopedic, and she is otherwise healthy, preventing any unnecessary freak outs about her legs. She told me to soul search about it and make the decision, and that's what I did. She had a few other reasons for wanting to induce, and all of her reasoning made sense to me. But at the same time, I felt like I was losing the birth experience that I'd hoped for, that was so important to me. I cried and grieved over that loss, but I wanted to do what I thought was best for both Violet and myself. And after all was said and done, I couldn't be more happy with the decision I made.
We scheduled the induction for Tuesday, August 26th at 9:00am. I was 39 weeks (full term). I was so incredibly nervous about all the interventions that I knew would come along with an induction. I knew that the pitocin would make my contractions stronger and longer, and I knew that I wanted to get an epidural this time, but this made me even more nervous. I mean the pain of childbirth was awful, but I'd never gotten a giant needle stuck in my back before, so it was nerve-wracking!
That day, Zach and I dropped Logan off with my friend Krisstina to watch him for the day, and we went on in to the hospital. We got lost at first, going to the wrong floor completely, then found our way to labor and delivery. We checked in and quickly got into our room. The afternoon before my doctor had checked me and stripped membranes, and I was only dilated to 1.5cm. But when the doctors checked me that morning I was already at 2.5cm (before even starting). They started my IV and broke my water (which was painful this time), and before I knew it I was having strong contractions. I guess they had started pitocin without telling me. So I got my epidural (which also hurt more than I'd expected) and settled down to play Phase 10 with Zach. At first the epidural didn't work on the left side, but after stronger medication and laying on my left side I felt a lot better. When my doctor got out of the surgery I was in I was already at 7cm.
A little later, Krisstina asked if we could FaceTime so that Logan could talk to Momma; he was missing me. As we were talking, I was having stronger and more painful contractions. I told her I had to go so I could ask the anesthesiologist to fix my epidural again. But my OB came in to check me again, and I was complete and they could see baby's head! They started to describe her hair color and said it was time to start pushing. I asked about the epidural but there was no fixing it at this point.
So I pushed once. They told me "STOP!" and started rushing around. Apparently little Violet was coming faster than we expected. They started rushing around getting their gloves and gowns on, calling nurses in to catch the baby, all while telling me not to sneeze. Zach was making me giggle and I was afraid that I was going to laugh the baby out! But they got situated, and after one more push, Violet was here.
I wish that they'd let me hold her, because they took her and started weighing her and doing footprints. It felt like forever before they let me hold her. But she was healthy, 7lbs. 6oz., good APGARs, and absolutely perfect. And when I say that, I don't mean she's perfect despite the fact that her legs are different. When I look at her, I truly see the perfection of God's creation. I really believe that He formed her perfectly the way He intended, and that her feet are not important to Him and should not be important to us. I look at her and I just see my perfect daughter, innocent and beautiful, and I couldn't be happier with her. I wouldn't trade her for anything. She's amazing.
I also want to mention that although the staff present was previously aware of her condition (we talked about it, so it wasn't an elephant in the room kind of situation), they were also great and treated her birth like the birth of any other baby. This meant so much to me. I wanted her birth to be joyful and that's exactly what it was. They told me how beautiful she was, how her coloring was perfect, and preserved the beauty of that moment. Zach and I will always have a beautiful memory of her birth because of them, and I'm so grateful for that. Now, if you don't see why I'm happy we induced, then you will in a minute.
We had a mostly pleasant stay in the hospital, enjoying those precious first days with our baby girl. The one time that was not pleasant was the next day when some nurse's assistants came to take her to the nursery. Now, we were told that she did not have to be taken except for her bath. She had already had her bath (Zach went with her) and we were told that all other tests and exams could be done bedside. She was a healthy baby, so this is what we expected. So when these people came to take my baby I questioned them and they said that the doctor needed to see her (could have come to the room) and that they couldn't do the hearing test in my room (not true). So I said I'd go with her, and I did. I watched through the nursery window as the doctor examined her, then she waved me in. Now, if you do five minutes of research on fibular hemimelia, one of the first things you find out is that there's no known cause. This pediatrician, however, acted like she knew it all, then proceeded to ask me five million questions about my drug habits during pregnancy and if I'd had studies done on me.
Let me explain why this upset me. My pregnancy with Violet (although joyful) was downright awful. I was in excruciating pain every single day. I had back pain that prevented me from bending over some days, and on other days I couldn't even get up. I had horrible heartburn that kept me up all night. I had awful, extremely painful hemorrhoids that hurt every time I stood (sorry TMI). I had huge varicose veins that went all down my leg and all over my vulva. These were the most painful because every time I stood up it felt like I was being stabbed in the leg and every time I went pee I felt like I was giving birth. But did I take pain medications like I was told? No. Did I take antacids? No. I didn't even take Tylenol because I had read that there was some study that it could cause behavioral problems in the child later in life. I know, it's all very paranoid of me. But I wanted to do this for my baby. My friends told me every single day to take something to relieve my pain but I refused. I'm not saying that taking medications during pregnancy is bad, but I just didn't. That was my choice and I know that I suffered an unreasonable amount for it. So for some ignorant pediatrician to ask me if I was taking drugs during my pregnancy was absolutely hurtful for me. Even though I don't blame myself for her condition, I will probably always feel inadequate as a mother because this happened to her while she was growing in my belly. So even though it was ignorant, it still hurt. Plus, she probably has crack babies coming into that hospital all the time, and do they have fibular hemimelia? NO!! Does she think that I'd been taking some all new drug that nobody has ever taken before? Just dumb. I can't even get over it a month later. Ignorant doctors need to be fired. I pushed Violet's crib back to my hospital room in tears and bawled my eyes out afterwards.
Okay I've gotten that out, now to move on. That experience made me realize that my joyful birth experience could have been completely different. Every staff member in my hospital room could have been that pediatrician. But my OB had them prepared and informed. I understand that most people have never heard of fibular hemimelia, but being informed before you talk about something makes a world of difference. Looking back, I wish that I'd said that to that pediatrician instead of just telling her that there's no known cause for fibular hemimelia. Oh well.
So we took our precious baby home and have been enjoying her for just over a month now. She is the perfect baby. She is doing so well and getting nice and chubby. She even smiles already and we love it.
Although we had that first month of "normal" before we started bringing her to the orthopedic surgeon, I was nervous and dreading that first appointment that whole time. I wanted everything to stay normal and joyful and not have to see any doctors.
We'd already guessed that the doctors would recommend amputation for her left foot. It's just a tiny little foot with two rays and no structure in the ankle or foot. We knew that she would never walk on it. But her right foot seemed good. Yes, it's extremely clubbed and only has three toes, but otherwise it looked like a good foot. So we were of course disappointed when we took her to Scottish Rite and they said that they would probably recommend amputation on both sides. The doctor said that the tendons in the right foot were too tight and would probably prevent it from being straightened out. He said that we would watch her grow, though, and sometimes things change and we're surprised by how things do change. The final decision will ultimately be up to us, though.
I'll do another blog post about the decision process. We'll go back in January to see him again so he can see how she's grown. But I'm pretty sure that we will go with what the doctors recommend. Basically, reconstruction may be an option, but who knows how many surgeries it will take, how much of her childhood will be spent in the hospital, and how effective it will be. We would be trying to "reconstruct" something that was never there. Her foot may never even function the way it should, and it will definitely never look normal (not that that's important in our decision). And anyone who's a parent will understand that the most awful thing in the whole world is seeing your child in pain. I don't know if I could go through surgery after surgery seeing her in pain. If it were a for sure good outcome, maybe. We have to decide what means we will take to get to an end that's not even definite. And we have to figure out what's best for her quality of life, including right now and the future. She can live a good life with prosthetics and her childhood wouldn't be any different from other children. There are a lot of things we'll take into consideration, though, and we will see multiple doctors and talk to families on each side of the decision before we make ours.
For now, we'll just love on our baby and enjoy watching her grow.
Towards the end of my pregnancy my doctor (who is amazing) suggested that we induce at the 39th week of pregnancy. Although I have my own reasons for thinking that waiting for natural labor is better, she had some good reasons as well. The main reason was that we could choose to induce on a day that she could be there. She could also inform the staff working that day that Violet has a birth defect that is solely orthopedic, and she is otherwise healthy, preventing any unnecessary freak outs about her legs. She told me to soul search about it and make the decision, and that's what I did. She had a few other reasons for wanting to induce, and all of her reasoning made sense to me. But at the same time, I felt like I was losing the birth experience that I'd hoped for, that was so important to me. I cried and grieved over that loss, but I wanted to do what I thought was best for both Violet and myself. And after all was said and done, I couldn't be more happy with the decision I made.
We scheduled the induction for Tuesday, August 26th at 9:00am. I was 39 weeks (full term). I was so incredibly nervous about all the interventions that I knew would come along with an induction. I knew that the pitocin would make my contractions stronger and longer, and I knew that I wanted to get an epidural this time, but this made me even more nervous. I mean the pain of childbirth was awful, but I'd never gotten a giant needle stuck in my back before, so it was nerve-wracking!
That day, Zach and I dropped Logan off with my friend Krisstina to watch him for the day, and we went on in to the hospital. We got lost at first, going to the wrong floor completely, then found our way to labor and delivery. We checked in and quickly got into our room. The afternoon before my doctor had checked me and stripped membranes, and I was only dilated to 1.5cm. But when the doctors checked me that morning I was already at 2.5cm (before even starting). They started my IV and broke my water (which was painful this time), and before I knew it I was having strong contractions. I guess they had started pitocin without telling me. So I got my epidural (which also hurt more than I'd expected) and settled down to play Phase 10 with Zach. At first the epidural didn't work on the left side, but after stronger medication and laying on my left side I felt a lot better. When my doctor got out of the surgery I was in I was already at 7cm.
A little later, Krisstina asked if we could FaceTime so that Logan could talk to Momma; he was missing me. As we were talking, I was having stronger and more painful contractions. I told her I had to go so I could ask the anesthesiologist to fix my epidural again. But my OB came in to check me again, and I was complete and they could see baby's head! They started to describe her hair color and said it was time to start pushing. I asked about the epidural but there was no fixing it at this point.
So I pushed once. They told me "STOP!" and started rushing around. Apparently little Violet was coming faster than we expected. They started rushing around getting their gloves and gowns on, calling nurses in to catch the baby, all while telling me not to sneeze. Zach was making me giggle and I was afraid that I was going to laugh the baby out! But they got situated, and after one more push, Violet was here.
I wish that they'd let me hold her, because they took her and started weighing her and doing footprints. It felt like forever before they let me hold her. But she was healthy, 7lbs. 6oz., good APGARs, and absolutely perfect. And when I say that, I don't mean she's perfect despite the fact that her legs are different. When I look at her, I truly see the perfection of God's creation. I really believe that He formed her perfectly the way He intended, and that her feet are not important to Him and should not be important to us. I look at her and I just see my perfect daughter, innocent and beautiful, and I couldn't be happier with her. I wouldn't trade her for anything. She's amazing.
I also want to mention that although the staff present was previously aware of her condition (we talked about it, so it wasn't an elephant in the room kind of situation), they were also great and treated her birth like the birth of any other baby. This meant so much to me. I wanted her birth to be joyful and that's exactly what it was. They told me how beautiful she was, how her coloring was perfect, and preserved the beauty of that moment. Zach and I will always have a beautiful memory of her birth because of them, and I'm so grateful for that. Now, if you don't see why I'm happy we induced, then you will in a minute.
We had a mostly pleasant stay in the hospital, enjoying those precious first days with our baby girl. The one time that was not pleasant was the next day when some nurse's assistants came to take her to the nursery. Now, we were told that she did not have to be taken except for her bath. She had already had her bath (Zach went with her) and we were told that all other tests and exams could be done bedside. She was a healthy baby, so this is what we expected. So when these people came to take my baby I questioned them and they said that the doctor needed to see her (could have come to the room) and that they couldn't do the hearing test in my room (not true). So I said I'd go with her, and I did. I watched through the nursery window as the doctor examined her, then she waved me in. Now, if you do five minutes of research on fibular hemimelia, one of the first things you find out is that there's no known cause. This pediatrician, however, acted like she knew it all, then proceeded to ask me five million questions about my drug habits during pregnancy and if I'd had studies done on me.
Let me explain why this upset me. My pregnancy with Violet (although joyful) was downright awful. I was in excruciating pain every single day. I had back pain that prevented me from bending over some days, and on other days I couldn't even get up. I had horrible heartburn that kept me up all night. I had awful, extremely painful hemorrhoids that hurt every time I stood (sorry TMI). I had huge varicose veins that went all down my leg and all over my vulva. These were the most painful because every time I stood up it felt like I was being stabbed in the leg and every time I went pee I felt like I was giving birth. But did I take pain medications like I was told? No. Did I take antacids? No. I didn't even take Tylenol because I had read that there was some study that it could cause behavioral problems in the child later in life. I know, it's all very paranoid of me. But I wanted to do this for my baby. My friends told me every single day to take something to relieve my pain but I refused. I'm not saying that taking medications during pregnancy is bad, but I just didn't. That was my choice and I know that I suffered an unreasonable amount for it. So for some ignorant pediatrician to ask me if I was taking drugs during my pregnancy was absolutely hurtful for me. Even though I don't blame myself for her condition, I will probably always feel inadequate as a mother because this happened to her while she was growing in my belly. So even though it was ignorant, it still hurt. Plus, she probably has crack babies coming into that hospital all the time, and do they have fibular hemimelia? NO!! Does she think that I'd been taking some all new drug that nobody has ever taken before? Just dumb. I can't even get over it a month later. Ignorant doctors need to be fired. I pushed Violet's crib back to my hospital room in tears and bawled my eyes out afterwards.
Okay I've gotten that out, now to move on. That experience made me realize that my joyful birth experience could have been completely different. Every staff member in my hospital room could have been that pediatrician. But my OB had them prepared and informed. I understand that most people have never heard of fibular hemimelia, but being informed before you talk about something makes a world of difference. Looking back, I wish that I'd said that to that pediatrician instead of just telling her that there's no known cause for fibular hemimelia. Oh well.
So we took our precious baby home and have been enjoying her for just over a month now. She is the perfect baby. She is doing so well and getting nice and chubby. She even smiles already and we love it.
Although we had that first month of "normal" before we started bringing her to the orthopedic surgeon, I was nervous and dreading that first appointment that whole time. I wanted everything to stay normal and joyful and not have to see any doctors.
We'd already guessed that the doctors would recommend amputation for her left foot. It's just a tiny little foot with two rays and no structure in the ankle or foot. We knew that she would never walk on it. But her right foot seemed good. Yes, it's extremely clubbed and only has three toes, but otherwise it looked like a good foot. So we were of course disappointed when we took her to Scottish Rite and they said that they would probably recommend amputation on both sides. The doctor said that the tendons in the right foot were too tight and would probably prevent it from being straightened out. He said that we would watch her grow, though, and sometimes things change and we're surprised by how things do change. The final decision will ultimately be up to us, though.
I'll do another blog post about the decision process. We'll go back in January to see him again so he can see how she's grown. But I'm pretty sure that we will go with what the doctors recommend. Basically, reconstruction may be an option, but who knows how many surgeries it will take, how much of her childhood will be spent in the hospital, and how effective it will be. We would be trying to "reconstruct" something that was never there. Her foot may never even function the way it should, and it will definitely never look normal (not that that's important in our decision). And anyone who's a parent will understand that the most awful thing in the whole world is seeing your child in pain. I don't know if I could go through surgery after surgery seeing her in pain. If it were a for sure good outcome, maybe. We have to decide what means we will take to get to an end that's not even definite. And we have to figure out what's best for her quality of life, including right now and the future. She can live a good life with prosthetics and her childhood wouldn't be any different from other children. There are a lot of things we'll take into consideration, though, and we will see multiple doctors and talk to families on each side of the decision before we make ours.
For now, we'll just love on our baby and enjoy watching her grow.
Thursday, May 15, 2014
Starting a new journey.
It's a bittersweet moment for me as I've put in my two weeks notice at work. No job has ever brought me so much joy, which is why I'm so sad to leave. I'm truly blessed to have worked with the moms and babies that I've grown to love and care for so much.
But these past few weeks it's been more than difficult to leave my heartache at the door and go to work. Some of my clients inspire me. They know what's best for their babies and they'll do anything to do it. But I also find myself getting frustrated seeing ones that clearly don't care about their children. They know what's best for their babies, and they do what's most convenient for them. For example, I find myself getting frustrated when I see a mom that decides to smoke while she's pregnant. I wonder why something horrible has happened to my baby, when I would do anything, and have done everything, to make my child healthy. I'd give her my legs if I could. I'd die if it could somehow make her normal. But nothing I can do will change anything. Which is why I'm frustrated when I see moms that do have an opportunity to make their child healthier or give them a better life, and they choose not to take it.
Originally I thought I'd tough it out, for those ones that make my job worth it. I planned on working through my pregnancy and then staying home to take care of my baby girl. I wanted to take a month before my due date and spend it giving all my love and attention to my little boy. After all, his life will be changing in some big ways, too. Not only will we have a newborn arriving, with everything that comes along with that, but he's going to have a sister with a medical condition that is probably going to take a lot of our attention. I don't know what her treatments will be yet, but it definitely won't be a normal life for any of us. Nothing makes me more emotional than the thought of not being able to give him the attention that every child needs.
But my emotional struggles aren't the thing that made me quit my job. Unfortunately, this pregnancy has been physically difficult as well. Some days I can hardly bend at the waist because of my back pain. And my right leg is covered in painful varicose veins that make it difficult to walk. I even went to the ER to check for a blood clot when my leg was painfully swollen and red. (I didn't have a clot, thank goodness.) I'm able to walk comfortably only when wearing compression stockings. And not only do I look like an old woman, but in 100 degree weather, these things are not exactly comfortable. I could never have imagined that at 23 years old and only 24 weeks pregnant, I would be having such a difficult time. Which is why I'm going to spend the next three months floating in a pool and giving my attention to my sweet boy.
Words of encouragement.
These past few weeks have been difficult for me in more ways than I can count. I've struggled a lot with finding somebody to talk to. I've been surprised to find that a lot of the words of comfort I've received had only made me feel worse. And that's only because nobody I know can possibly imagine what I'm going through. I don't even feel like my husband has any idea. However, I am happy to have talked to a couple of other moms who have been through similarly tough situations. Some of those moms had it tougher than I do, knowing prenatally that their baby may not survive. But I found comfort in the fact that the Lord used those struggles for His plan, and that those women are now stronger and closer to God than they ever were before.
I also spoke to another mom whose daughter was born with fibular hemimelia. Her words brought me to tears because she so clearly understands what I've been going through. I've struggled a lot seeing other moms, my friends, family, clients, who all have normal babies. None of them have to worry about what's going to happen after their child's birth. None of them have to worry about painful surgeries, treatments, amputations. It's the most depressing form of jealousy, and it's not something I'm proud of. I can try to find comfort in God and in others, but I still worry and I still feel sad most of the time. That's why these words touched me so much:
"I struggled with feeling like my daughter would not be 'normal' and through the years I've realized that I have something even better than normal. I have no doubt that your daughter's life will be a blessing to your family in ways you don't even know right now. She will live a happy, fulfilled life full of joy and part of that will be because of the strong mother you will be to her."
I'm so grateful for all the words of encouragement that I've received, and I can't imagine going through this without the wonderful support system we have in our friends and family. But I hope that you all can understand that I'm going through something that most people will not understand, and I'm still trying to figure out what I need to cope with it, so if you don't know what to say, that's okay.
I also spoke to another mom whose daughter was born with fibular hemimelia. Her words brought me to tears because she so clearly understands what I've been going through. I've struggled a lot seeing other moms, my friends, family, clients, who all have normal babies. None of them have to worry about what's going to happen after their child's birth. None of them have to worry about painful surgeries, treatments, amputations. It's the most depressing form of jealousy, and it's not something I'm proud of. I can try to find comfort in God and in others, but I still worry and I still feel sad most of the time. That's why these words touched me so much:
"I struggled with feeling like my daughter would not be 'normal' and through the years I've realized that I have something even better than normal. I have no doubt that your daughter's life will be a blessing to your family in ways you don't even know right now. She will live a happy, fulfilled life full of joy and part of that will be because of the strong mother you will be to her."
I'm so grateful for all the words of encouragement that I've received, and I can't imagine going through this without the wonderful support system we have in our friends and family. But I hope that you all can understand that I'm going through something that most people will not understand, and I'm still trying to figure out what I need to cope with it, so if you don't know what to say, that's okay.
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