I thought I'd make a blog post about fibular hemimelia for anyone who's curious about Violet's condition. Like I said before, googling the condition and looking at the images is very scary and I would against advise it. Basically, it's a very rare condition where the fibular bone is missing or underdeveloped. Bilateral cases are even more rare, and our Violet happens to have it in both legs. The absence of the fibulas also causes a whole range of other problems. This is the part that we're unsure about. It seems like there are endless possibilities of problems that could arise. Treatment depends on the severity of the case. It could range from just a couple of reconstructive surgeries and stabilization of the feet, to amputation. We hope for the best possible outcome for her, but we will accept whatever happens and we will praise God for giving us our precious angel.
Here is a good resource about fibular hemimelia:
http://www.limblengtheningdoc.org/files/fibular_hemimelia_FAQs.pdf
And here is a blog from another mother of a baby girl with fibular hemimelia. I wanted to include this because not only does she describe the condition in a way that's easy to understand, but her blog posts also describe the pros and cons of both treatment options, as well as the feelings and emotions of a mom that also has a child with this condition. It is also very encouraging to me to see another little girl with this condition who is happy and healthy (and also absolutely beautiful).
http://lisaelaine4.blogspot.com/p/fibular-hemimelia.html
I'm going to continue to post updates as we find out more. We'll go in three weeks for a fetal echocardiogram to check on Violet's heart, and also another sonogram to see how she's growing. For now, praying that everything looks good and that it all turns out for the best.
Tuesday, April 29, 2014
Got our amnio results!!
Thank the Lord, after 20 days of torture we finally got our amnio results!! As far as genes go, everything looks completely normal!! Also, we can be 100% sure that we are having a baby girl!!
This means that we can rule out any genetic disorders being the cause of Violet's fibular hemimelia. But we do still have a long road ahead of us. We don't know how severe her condition is, and we probably won't know a whole lot until after her birth. This also means that we don't know what kind of treatment options we will have. But we are thankful that so far it looks like our little girl is healthy.
This means that we can rule out any genetic disorders being the cause of Violet's fibular hemimelia. But we do still have a long road ahead of us. We don't know how severe her condition is, and we probably won't know a whole lot until after her birth. This also means that we don't know what kind of treatment options we will have. But we are thankful that so far it looks like our little girl is healthy.
Sunday, April 27, 2014
Some thoughts.
If I can say that our baby girl has done one thing already, it's that she has definitely changed us.
I've gone through the past couple of weeks with ups and downs, hitting some pretty low points that I'm not proud of. I've gone through shock, sadness, anger, fear, depression, and more. I've had moments where I'm so scared of what we're facing that I don't want to face it. I can't say the same for my amazing husband; there hasn't been one moment where he's wanted her any less. I've also had a lot of moments of anger. Sometimes for God and sometimes for other people. I've hated every drug addicted, careless parent who manages to pop out ten perfectly healthy children, only to neglect to give them the love that they deserve. But none of this does me or anyone else any good.
But since I'm having some positive thoughts this morning, I thought I'd better write them down so I can remember them later.
Like I said, I think that our daughter has already changed me. I've learned to hold my baby boy a little bit tighter, and be a little more thankful for him (sorry for the cliche). And I've learned to appreciate the beauty in everybody. Not just the "inside" or "outside" beauty, but the pure, uncategorized beauty that is God's creation. Especially in children. For example, I think that a lot of times we see a child with Down Syndrome and we just see a child with Down Syndrome. But now I can see the happiness, joy, love, beauty, and perfection of God's creation. And I know I'll see all that and more in our baby girl when she's here.
Although I've tried to take this one day at a time, I've also spent a lot of days worrying about every single moment of the rest of my daughter's life. About going to the pool, about being teased on the playground, about teenage boys not wanting to date her, about picking out a dress and shoes for her wedding, about getting out of bed twenty times per night to go to the bathroom when she's nine months pregnant.
But I can also see her overcoming everything. Even if amputation is our best option. I can see a beautiful, healthy, joyful, perfect little baby crawling around our apartment with no legs. I can see a happy little girl running on the playground, and with pants on you wouldn't be able to tell the difference between her and the other kids; she's even proud of her legs. Even though some kids might tease her, I can see other kids with big hearts coming to her defense. I can see myself telling her to go for the good boys who don't care about superficial things like prosthetic legs, but she doesn't listen and goes for the bad ones anyways, because she's so strikingly beautiful that every boy wants her; I'll probably have all the same worries as every other parent of a teenage girl. I can see myself crying like a baby on her wedding day, even if she runs off to Vegas because I'll follow her there. And I can see her being an amazing mother. Or she doesn't have to be a mother if she doesn't want kids, she can be an Olympic runner or a doctor or the President. No matter what, she'll be perfect.
Sorry about the sappy blog post.
I've gone through the past couple of weeks with ups and downs, hitting some pretty low points that I'm not proud of. I've gone through shock, sadness, anger, fear, depression, and more. I've had moments where I'm so scared of what we're facing that I don't want to face it. I can't say the same for my amazing husband; there hasn't been one moment where he's wanted her any less. I've also had a lot of moments of anger. Sometimes for God and sometimes for other people. I've hated every drug addicted, careless parent who manages to pop out ten perfectly healthy children, only to neglect to give them the love that they deserve. But none of this does me or anyone else any good.
But since I'm having some positive thoughts this morning, I thought I'd better write them down so I can remember them later.
Like I said, I think that our daughter has already changed me. I've learned to hold my baby boy a little bit tighter, and be a little more thankful for him (sorry for the cliche). And I've learned to appreciate the beauty in everybody. Not just the "inside" or "outside" beauty, but the pure, uncategorized beauty that is God's creation. Especially in children. For example, I think that a lot of times we see a child with Down Syndrome and we just see a child with Down Syndrome. But now I can see the happiness, joy, love, beauty, and perfection of God's creation. And I know I'll see all that and more in our baby girl when she's here.
Although I've tried to take this one day at a time, I've also spent a lot of days worrying about every single moment of the rest of my daughter's life. About going to the pool, about being teased on the playground, about teenage boys not wanting to date her, about picking out a dress and shoes for her wedding, about getting out of bed twenty times per night to go to the bathroom when she's nine months pregnant.
But I can also see her overcoming everything. Even if amputation is our best option. I can see a beautiful, healthy, joyful, perfect little baby crawling around our apartment with no legs. I can see a happy little girl running on the playground, and with pants on you wouldn't be able to tell the difference between her and the other kids; she's even proud of her legs. Even though some kids might tease her, I can see other kids with big hearts coming to her defense. I can see myself telling her to go for the good boys who don't care about superficial things like prosthetic legs, but she doesn't listen and goes for the bad ones anyways, because she's so strikingly beautiful that every boy wants her; I'll probably have all the same worries as every other parent of a teenage girl. I can see myself crying like a baby on her wedding day, even if she runs off to Vegas because I'll follow her there. And I can see her being an amazing mother. Or she doesn't have to be a mother if she doesn't want kids, she can be an Olympic runner or a doctor or the President. No matter what, she'll be perfect.
Sorry about the sappy blog post.
Saturday, April 26, 2014
We still don't really know.
I thought I'd write this down so that I could explain to you all the last couple of weeks without reliving it more than once.
Let me just start off by talking about my pregnancy so far. I found out very early that I was pregnant, before I even missed my period. I was only about 3 weeks and a couple of days. Since we lost the last two pregnancies, I have been extremely, probably excessively cautious. I didn't take any risks, and cut out everything that you're not supposed to eat or drink during pregnancy. And completely cutting out caffeine cold turkey is a hard thing for me! I do not like to take any medications, and suffered through a migraine for 24 hours on two occasions until I finally broke down and took a Tylenol. All of my household cleaners are homemade, natural concoctions, so that I'm not exposed to any chemicals while cleaning.
So if you're having a thought that what happened to our baby is somehow caused by something I did, then please keep these thoughts to yourself. They're hurtful and completely untrue. I've gone over it a million times in my head and bugged my amazing doctor about every little thing that I could possibly imagine could be the cause. I don't believe there's anything I could have done to cause or prevent this.
Now, on with the story.
We had a routine ultrasound scheduled for 19 weeks, on a Tuesday morning. The Sunday before, Zach and I went to church together. The message was on pain and suffering. Since I had already worried about everything I could think of that could go wrong with this pregnancy, of course I wondered if God sent us this message so that we would be able to find a way to cope and rely on Him if something were to be wrong with our baby. I even asked Zach if he thought that God sent us that message because something is wrong with our baby. But I tried not to worry and tried to be excited about seeing our baby and finding out the sex.
The morning of the ultrasound I went into full panic mode. I was so nervous that I think I went pee every 4 minutes or less. But when we saw our baby on the screen and everything looked normal, I started to calm down. We saw the little heart and the little kidneys, and I felt relieved. I cried like a baby when we found out it was a girl, and even asked the ultrasound tech to double check.
She left the room afterwards to show the images to the doctor. When it took a very long time, I started to panic again. I knew something had to be wrong for it to take this long. The doctor finally came in with the ultrasound tech (not my normal OB) and started looking at the screen. I asked if something was wrong, and his response was "Yeah, probably."
The ultrasound showed that she had club foot on both sides. Of course we were shocked and wanted to know how they could tell, how sure they were, and a million other questions. He told us that this is not something that they were mistaken about, they can be sure about it. He also told us that when they find one abnormality, they like to check for other things, so I should have more tests. This was the part that worried me the most.
When they left the room I cried a lot and looked on Google on my phone to try to find the causes of club foot. On the list of possible causes were Spina Bifida and Trisomy 18. I made Zach go get the ultrasound tech and ask her if the spine looked normal. She said as far as she could tell, it did.
Of course, I went home and looked up everything I could, including Trisomy 18. I found out that it's 100% fatal, most babies being stillborn or dying shortly after death. My OB called and recommended that I go get an amnio as well as a level 2 ultrasound with a doctor that specializes in high risk pregnancies. I scheduled both for the following morning. The rest of that day, I think, I spent crying and staring at the wall, but I don't really remember. I could deal with having my baby's legs in casts and braces for a couple of months, but all the other possibilities? I wasn't sure. I did manage to still put together our gender reveal. I think I just decided that no matter what happened, she is still our baby girl and I still wanted to try to be happy and excited and do everything that I had originally planned.
I was sick that day and most of the following days. I had to work hard to control my anxiety attacks. So it's not a surprise that I was a wreck at my appointment the next day. But the doctor was wonderful and had printed us a two-page list of possible causes of club foot. One by one, he went through and crossed off the ones we could already rule out. He also pointed out the ones that we could probably see signs of on the ultrasound, and what he would look for to rule those out. For example, if she had some kind of muscular disorder, then she would have problems in the upper extremities as well. But if we saw her waving her little fingers, then we could rule those out. This helped a lot and gave us something to focus on while the ultrasound was being done. We watched her wave her little fingers and were very happy. Again, we didn't notice anything abnormal (besides the club foot), but he did.
He came back and told us that she had some other abnormalities in her lower extremities, including the fact that her fibulas were either completely missing or he couldn't see them because they're not ossified yet. Either way, he should have been able to see them since he could already clearly see both bones in the arms. He said this made him think that there may be some kind of genetic disorder, although he's not sure which one, and that we should definitely do the amnio to find out.
After hearing this news and preparing to have a giant needle stuck into my belly, you can imagine my anxiety. I was shaking uncontrollably and had to really work to calm down so that he wouldn't miss when he stuck the needle in me. But the amnio itself was actually not as bad as you would think. I just didn't watch and I was fine.
It was another hard (and kind of fuzzy) day after learning even more bad news and now being even more worried about those terrifying genetic disorders. I think I probably just cried a lot, prayed, and rested since I was sore.
That day during my obsessive googling, I came across some information on fibular hemimelia. Since that day I've been researching it nonstop. I would advise against googling this condition, since you will see a lot of very, very scary things. Basically, it's the absence or underdevelopment of the fibular bones, which causes a lot of other abnormalities in the lower extremities. There is a huge range of differences in the way it presents. There are very extreme cases and milder cases. It seems like every case is probably different from the next. It's very, very rare, and having it on both sides is even more rare. Treatment ranges from just a couple of corrective surgeries, to amputation of the legs. We have come to accept any of these possibilities.
We still had to wait 5 days not knowing if the other (really scary) possibilities would happen. We worried the most about trisomy 18. But the doctor's office called on a Monday to give us the initial results of our amnio, which showed that her gross number of chromosomes was normal. Our biggest fears were relieved, since this meant that the fatal syndromes we worried about could be ruled out.
I asked the nurse if the doctor could call me himself, and he did not too long after. He explained that we still needed to wait for the microarray, which would give us a full picture of baby girl's genes and tell us if she has any of the more rare genetic disorders. Those results take a couple of weeks, and we are still waiting. He also said that with the information we have so far, it looks like it could be fibular hemimelia.
This all means that we can probably still have a healthy, happy baby girl. She may have a more difficult life, more surgeries, possibly prosthetic legs, but hopefully she will be normal in all other aspects. Again, we still have to wait for the full results from our amnio to rule out any other genetic disorders. But we are praying hard and we believe that God will come through for us.
Let me just start off by talking about my pregnancy so far. I found out very early that I was pregnant, before I even missed my period. I was only about 3 weeks and a couple of days. Since we lost the last two pregnancies, I have been extremely, probably excessively cautious. I didn't take any risks, and cut out everything that you're not supposed to eat or drink during pregnancy. And completely cutting out caffeine cold turkey is a hard thing for me! I do not like to take any medications, and suffered through a migraine for 24 hours on two occasions until I finally broke down and took a Tylenol. All of my household cleaners are homemade, natural concoctions, so that I'm not exposed to any chemicals while cleaning.
So if you're having a thought that what happened to our baby is somehow caused by something I did, then please keep these thoughts to yourself. They're hurtful and completely untrue. I've gone over it a million times in my head and bugged my amazing doctor about every little thing that I could possibly imagine could be the cause. I don't believe there's anything I could have done to cause or prevent this.
Now, on with the story.
We had a routine ultrasound scheduled for 19 weeks, on a Tuesday morning. The Sunday before, Zach and I went to church together. The message was on pain and suffering. Since I had already worried about everything I could think of that could go wrong with this pregnancy, of course I wondered if God sent us this message so that we would be able to find a way to cope and rely on Him if something were to be wrong with our baby. I even asked Zach if he thought that God sent us that message because something is wrong with our baby. But I tried not to worry and tried to be excited about seeing our baby and finding out the sex.
The morning of the ultrasound I went into full panic mode. I was so nervous that I think I went pee every 4 minutes or less. But when we saw our baby on the screen and everything looked normal, I started to calm down. We saw the little heart and the little kidneys, and I felt relieved. I cried like a baby when we found out it was a girl, and even asked the ultrasound tech to double check.
She left the room afterwards to show the images to the doctor. When it took a very long time, I started to panic again. I knew something had to be wrong for it to take this long. The doctor finally came in with the ultrasound tech (not my normal OB) and started looking at the screen. I asked if something was wrong, and his response was "Yeah, probably."
The ultrasound showed that she had club foot on both sides. Of course we were shocked and wanted to know how they could tell, how sure they were, and a million other questions. He told us that this is not something that they were mistaken about, they can be sure about it. He also told us that when they find one abnormality, they like to check for other things, so I should have more tests. This was the part that worried me the most.
When they left the room I cried a lot and looked on Google on my phone to try to find the causes of club foot. On the list of possible causes were Spina Bifida and Trisomy 18. I made Zach go get the ultrasound tech and ask her if the spine looked normal. She said as far as she could tell, it did.
Of course, I went home and looked up everything I could, including Trisomy 18. I found out that it's 100% fatal, most babies being stillborn or dying shortly after death. My OB called and recommended that I go get an amnio as well as a level 2 ultrasound with a doctor that specializes in high risk pregnancies. I scheduled both for the following morning. The rest of that day, I think, I spent crying and staring at the wall, but I don't really remember. I could deal with having my baby's legs in casts and braces for a couple of months, but all the other possibilities? I wasn't sure. I did manage to still put together our gender reveal. I think I just decided that no matter what happened, she is still our baby girl and I still wanted to try to be happy and excited and do everything that I had originally planned.
I was sick that day and most of the following days. I had to work hard to control my anxiety attacks. So it's not a surprise that I was a wreck at my appointment the next day. But the doctor was wonderful and had printed us a two-page list of possible causes of club foot. One by one, he went through and crossed off the ones we could already rule out. He also pointed out the ones that we could probably see signs of on the ultrasound, and what he would look for to rule those out. For example, if she had some kind of muscular disorder, then she would have problems in the upper extremities as well. But if we saw her waving her little fingers, then we could rule those out. This helped a lot and gave us something to focus on while the ultrasound was being done. We watched her wave her little fingers and were very happy. Again, we didn't notice anything abnormal (besides the club foot), but he did.
He came back and told us that she had some other abnormalities in her lower extremities, including the fact that her fibulas were either completely missing or he couldn't see them because they're not ossified yet. Either way, he should have been able to see them since he could already clearly see both bones in the arms. He said this made him think that there may be some kind of genetic disorder, although he's not sure which one, and that we should definitely do the amnio to find out.
After hearing this news and preparing to have a giant needle stuck into my belly, you can imagine my anxiety. I was shaking uncontrollably and had to really work to calm down so that he wouldn't miss when he stuck the needle in me. But the amnio itself was actually not as bad as you would think. I just didn't watch and I was fine.
It was another hard (and kind of fuzzy) day after learning even more bad news and now being even more worried about those terrifying genetic disorders. I think I probably just cried a lot, prayed, and rested since I was sore.
That day during my obsessive googling, I came across some information on fibular hemimelia. Since that day I've been researching it nonstop. I would advise against googling this condition, since you will see a lot of very, very scary things. Basically, it's the absence or underdevelopment of the fibular bones, which causes a lot of other abnormalities in the lower extremities. There is a huge range of differences in the way it presents. There are very extreme cases and milder cases. It seems like every case is probably different from the next. It's very, very rare, and having it on both sides is even more rare. Treatment ranges from just a couple of corrective surgeries, to amputation of the legs. We have come to accept any of these possibilities.
We still had to wait 5 days not knowing if the other (really scary) possibilities would happen. We worried the most about trisomy 18. But the doctor's office called on a Monday to give us the initial results of our amnio, which showed that her gross number of chromosomes was normal. Our biggest fears were relieved, since this meant that the fatal syndromes we worried about could be ruled out.
I asked the nurse if the doctor could call me himself, and he did not too long after. He explained that we still needed to wait for the microarray, which would give us a full picture of baby girl's genes and tell us if she has any of the more rare genetic disorders. Those results take a couple of weeks, and we are still waiting. He also said that with the information we have so far, it looks like it could be fibular hemimelia.
This all means that we can probably still have a healthy, happy baby girl. She may have a more difficult life, more surgeries, possibly prosthetic legs, but hopefully she will be normal in all other aspects. Again, we still have to wait for the full results from our amnio to rule out any other genetic disorders. But we are praying hard and we believe that God will come through for us.
Hoping for our baby girl.
It's funny to compare the way we got pregnant with Logan to the journey to getting pregnant with our baby girl. With Logan, Zach and I hadn't been together very long and it was literally the first time we had sex (I know this for a fact). We were also very young (19 and 21) and were not prepared to be parents at all. In fact, I cried on the couch for a week when I found out I was pregnant (ask my brother). But every time I think about it I'm actually amazed at how perfectly everything turned out for us.
Fast forward two years, we decided that we wanted another baby. We started trying and immediately got pregnant, but shortly afterwards had an early miscarriage (about eight weeks). It was hard, but we really didn't know what hard was at the time. Looking back, I know that losing a baby is devastating, but I also know that it's the more common kind of hard. It's not the kind of hard that happens when you go through something really awful.
The next one was a little bit worse. We found out at eight weeks, via sonogram, that our pregnancy wasn't viable. I guess since I'm kind of "crunchy" and didn't want to use drugs or surgery, I decided to let my body pass the pregnancy naturally. I didn't expect it to take another four weeks before it finally came out, and all that time the sac had continued to grow. All the while, I also had every symptom in the book of being pregnant, which made it really hard to accept that our baby was not alive. It was a long twelve weeks, and after that I learned that having a miscarriage that far along is exactly as painful as labor. And it lasted longer than labor with a nine pound baby.
After that, I never felt like my body was healed. I didn't think we would be able to get pregnant again because of the way my body was. I still felt like there was something wrong. But about seven months later we were surprised to find out that we were pregnant again. The first trimester I worried constantly, and was always running to the bathroom to check if I was bleeding. But then I made it to 13 weeks. After that I still wasn't convinced that it was still alive in there, which is why we waited until my next doctor appointment to announce the pregnancy. We were very, very happy. But it didn't last long.
Fast forward two years, we decided that we wanted another baby. We started trying and immediately got pregnant, but shortly afterwards had an early miscarriage (about eight weeks). It was hard, but we really didn't know what hard was at the time. Looking back, I know that losing a baby is devastating, but I also know that it's the more common kind of hard. It's not the kind of hard that happens when you go through something really awful.
The next one was a little bit worse. We found out at eight weeks, via sonogram, that our pregnancy wasn't viable. I guess since I'm kind of "crunchy" and didn't want to use drugs or surgery, I decided to let my body pass the pregnancy naturally. I didn't expect it to take another four weeks before it finally came out, and all that time the sac had continued to grow. All the while, I also had every symptom in the book of being pregnant, which made it really hard to accept that our baby was not alive. It was a long twelve weeks, and after that I learned that having a miscarriage that far along is exactly as painful as labor. And it lasted longer than labor with a nine pound baby.
After that, I never felt like my body was healed. I didn't think we would be able to get pregnant again because of the way my body was. I still felt like there was something wrong. But about seven months later we were surprised to find out that we were pregnant again. The first trimester I worried constantly, and was always running to the bathroom to check if I was bleeding. But then I made it to 13 weeks. After that I still wasn't convinced that it was still alive in there, which is why we waited until my next doctor appointment to announce the pregnancy. We were very, very happy. But it didn't last long.
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