We wanted to first off thank everyone who has been praying for Vada and this pregnancy. God is working! Please continue to keep Vada in your prayers.
We went to the cardiologist again, this is our 2nd visit with him & we will be going back up in 4 weeks. If everything goes as planned. If you haven't read any of the other updates, Vada has two "holes" in her heart. Originally we were thinking surgery with in the first four to six months of her life. However, today Dr. Bramlett said that he couldn't really see the hole in the lower part of her heart. He said that its still there, but looks as though it may be sealing up on its own some. This is great news! The hole on to upper part is still pretty large, but many people are born with this defect & don't realize it until they are already adults. So, we may be able to hold off on the heart surgery even longer! Plus, he doesn't think that she will have any troubles, or "side effects" b/c of her heart prior to surgery.
Then I saw my doctor, the one who diagnosed all of this. She increased my dosage for Procardia b/c the contractions are coming on stronger & are causing me more discomfort. Last visit she said I had too much amniotic fluid. Not a huge amount, but enough to be considered polyhydramnios. The amount of fluid has increased some (which could be some of the reason for the contractions & the uncomfortableness I'm having. We had another sonogram in Dr. Renfroe's office (as well as Dr. Bramlett's) today & Vada is growing! She is weighing in at 2lbs 10oz, give or take 6 oz., and her stomach hasn't changed too much, which is good. Over all there has been some slight changes, but nothing that Dr. Renfroe is overly concerned about. I'll be going back to her office the same day I go to the Cardiologists. Until then I am still on bed rest... another 4 weeks! As long as that means Vada will be able to have more time to grow, so be it. After today I am actually looking forward to laying down again!
So really, this has been the best news we've had so far. I love the no nonsense, straight to the point type of treatment were getting. Were not treated like another "case" or "number". We listened to, & are giving plenty of time to ask any and all questions. In return we get honest answers that aren't sugar coated. Today was the only time where we went up anticipating something new and alarming & actually left smiling.
Wednesday, December 30, 2009
Monday, December 7, 2009
Update on Vada ~ 3rd trip to Peoria
by Tara Wilson on Monday, December 7, 2009 at 11:25pm
First I just want to say that if I am leaving you out from being tagged in these updates, i'm not trying to. Tagging everyone is hard b/c I always forget someone, or there are only so many I can tag. Please don't be offended, I am not trying to pick and choose, or to be rude. So if I tagged you in one but not the other, or I haven't tagged you at all, it is not intentional. :)
During today’s visit we had another sonogram looking at Vada's heart & the stomach/duodenum area. We also received some great 3D/4D pictures of Vada's cute little face!! (Which I will post soon) It looks as though the heart issues have not worsened, and the stomach issues are the same for the most part. We saw fluid in her stomach, in the duodenum & in her bladder. (For those of you who don’t know, and I didn’t really before today, with typical pregnancy sonograms you would see the stomach, but you shouldn’t see the duodenum. (Fluid should pass straight through that and not get "backed up".) We know that this is caused by duodenal stenosis, which means there is a narrowing or partial blockage of a portion of her duodenum. It could be worse it’s not Duodenal atresia which is a complete blockage or absence of a portion of the duodenum. So she has the better of the two in this situation as well.
We found out that she weighs approximately 1lb-11oz., which is exciting! She’s getting bigger! We also saw that the length of her legs are about a week behind for development. This is common with her having Down syndrome, and not something we are really concerned with right now.
Then I was diagnosed with something new, Polyhydramnios, meaning I have more amniotic fluid than I am supposed to have. This happens in about 1% of all pregnancies (from what I’ve read) and is caused by a number of different things, but is linked with Chromosomal abnormalities, most commonly Trisomy 21, which Vada has been positively diagnosed with (the 2nd part of the amniocentesis came back this last Friday, and is about 99% accurate. This means that my stomach is also going to be bigger than it should be because of the extra fluid.
The polyhydramnio's comes with new risks and concerns for both Vada and I (from what I am reading more her, than me). Pertaining specifically to Vada we want to continue monitoring her to make sure that no fluid ends up in or around her heart. (I'll be going back to Dr. Renfroe’s office in 3 weeks to do another check up on the fluid.) For Vada this could cause heart failure & could also cause poor development in her lung tissue which could lead to her death. With "normal" pregnancies the perinatal mortality rate (PMR) is about 2 out of every 1000. The PMR increases to 4.12 deaths per 1000 pregnancies with polyhydramnios. One thing I will say is that with all of this, it could be even more fatal if she were unable to take in any fluid at all, and we already see that for right now some fluid is passing. With Vada's congenital "defects" it may create a problem down the road with her being able to swallow the fluid, which in return stops the ingesting of amniotic fluid. Making things even more risky than what we are facing at this moment. For now, it’s not an issue we have to deal with. I however feel confident she will be fine. I’m nervous, but not scared, at least not like I was. The majority of what I am telling you is worse case scenario stuff. She doesn’t have it as bad as she could & that is very relieving to Justin and I.
For the pregnancy as a whole this could lead to such issues as (I just copied and pasted this)
* Premature delivery
* PROM (Premature rupture of the membranes- loss of amniotic fluid)
* Placental abruption (the placenta partially or completely peels away from the uterine wall before delivery. Placental abruption is an uncommon and serious complication of pregnancy. The placenta is a structure that develops in the uterus during pregnancy to nourish the growing baby. Placental abruption can deprive the baby of oxygen and nutrients and cause heavy bleeding in the mother. Left untreated, placental abruption puts both mother and baby in jeopardy. Placental abruption is an emergency, requiring immediate medical attention.) - I still need to look into how I would know if this is happening, like the signs I need be aware of. That’s the next step after this update.
* Stillbirth
* Postpartum hemorrhage (severe bleeding after delivery)
* Fetal malposition (the baby is not lying in a head-down position and may need to be delivered by cesarean section)
Right now, as it is, I have been having contractions almost every day. Sometimes I might have a day or so in-between, for the most part it’s everyday. They are not painful, they have just been an uncomfortable tightening feeling, some stronger than others and never four within an hour (which I’ve now been told that is by cut off. It was five.). Sometimes I may only have one or two a day, so don’t think it’s like labor or something… it’s not. :) The contractions are probably being caused by the polyhydramnios . My blood pressure is actually lower than "normal", but I am still swelling, and enough in some areas to leave some pretty lasting indents in my skin (in the ankles, calves, feet area). Because of the swelling I can’t wear any of my shoes that I could before I was pregnant, and I had to take off my wedding rig over a month ago. With my blood pressure being so low, it probably has nothing to do with hypertension (that is high to very high blood pressure), so I’m not for sure how this plays into things. Dr. Renfroe took a look at my ankles today and commented on how she’s going to have to put me in the hospital. Obviously she didn’t, we think she was referring more towards the one thing after another situation that we seem to be in. So now we are also watching that. I will tell you that I drink LOTS of water, and I don’t eat much food with salt or that has been fried! I’ve even stopped eating canned veggies because of all of the sodium. All I know is its worse now that it was a month or so ago, and its worse when I’ve been on my feet for any prolonged period of time. Either way I am glad she took a look and that she is concerned with it. Don’t get me wrong, I don’t want any new problems to deal with, but this has concerned both Justin and I since the first time we noticed it.
After all of the above conversations we then talked about setting a date for delivery. The goal for right now is to get me to 34 weeks. Anything above and beyond that is wonderful. The problem with setting a date is that we would typically set it for 38 weeks, but she thinks we’ll go before then. If I go early there is a big possibility for having a c-section. I was talking to a friend of mine earlier and couldn’t fully answer her question as to why we would probably have a cesarean. That was because I couldn’t remember all that was said during our appointment. Justin had to remind me of what Dr. Renfroe had said about the cesarean. (Originally I wanted a fully natural birth with Vada. I was even trying to talk Justin into doing a home birth, with some guidance from a very smart friend! I actually think I got him close to agreeing.) So, today when Dr. Renfroe brought up scheduling a date, he asked what Dr. Renfroes theories were on Vaginal verses Cesarean. She agreed that vaginal births especially natural ones were the best, especially in babies who have Down syndrome. However, in our case right now Vada is breeched, which could change. If she came early it could put stress on her to go through the labor process. If she was born by cesarean then she could be worked on immediately and we wouldn’t prolong anything. If there ended up being fluid around her heart, again that could lead to more problems if we did have a natural birth. So, it makes sense, at least to us, and for the most part. Things may change, but in all honesty I have lost the drive to do things the way I had really wanted to, or the way I was planning. All I care about is what is best for Vada. Justin and I trust Dr. Renfroe's judgment. She is not a typical doctor, at least not one that Justin and I have ever dealt with. She is laid back and patient, she’s to the point but never makes you feel like we are a case or a number to her; she listens to us, and to all of our concerns. With today’s conversations I didn’t feel like she pushes cesareans just to push them, I felt like she believed that this was in our best interest as of now. So, IF I need to have a cesarean, then so be it. We haven’t scheduled anything yet. I see the peds cardiologist on the 30th then I go over to Dr. Renfroe office for another check up, she said we’ll probably set it up then. We need to see how everything is progressing to get a better idea on how much time she thinks I have.
So for now I am not officially on bed rest. She told me to stay off of my feet whenever I can, and to stay lying down & to keep my feet elevated, but "bed rest" was not a word she used. However, I am listening. I will do my normal picking up the girls from school, doctor’s appointments & the things that I have to, but i’m no longer pushing it. If my back hurts i’m sitting down. If I start swelling worse, i’m sitting down. I won’t be going shopping, unless it is for groceries, I won’t be going for walks, or doing anything that requires me to stands for too long. Her telling me this made Justin feel better because he has been telling me to do the same thing for awhile now.
Overall the appointment wasn’t bad. We received more news that we just need to be aware of, but Justin and I feel okay about everything. For awhile I had a hard time picturing Vada coming home, my fear of losing her made it impossible to see our future with her in it. Now I can imagine our future, not that that means anything, but it makes me more confident that she will be coming home. I’ll just keep holding onto that thought because it makes me stronger. Honestly, I still feel that despite the issues were dealing with, God is helping us and helping Vada. On top of all of that, we have a great mid wife, and wonderful doctors in Peoria. As well as some pretty good friends who are here for us and a a wonderful family to turn to. It all makes us feel a little more at ease, we are blessed.
First I just want to say that if I am leaving you out from being tagged in these updates, i'm not trying to. Tagging everyone is hard b/c I always forget someone, or there are only so many I can tag. Please don't be offended, I am not trying to pick and choose, or to be rude. So if I tagged you in one but not the other, or I haven't tagged you at all, it is not intentional. :)
During today’s visit we had another sonogram looking at Vada's heart & the stomach/duodenum area. We also received some great 3D/4D pictures of Vada's cute little face!! (Which I will post soon) It looks as though the heart issues have not worsened, and the stomach issues are the same for the most part. We saw fluid in her stomach, in the duodenum & in her bladder. (For those of you who don’t know, and I didn’t really before today, with typical pregnancy sonograms you would see the stomach, but you shouldn’t see the duodenum. (Fluid should pass straight through that and not get "backed up".) We know that this is caused by duodenal stenosis, which means there is a narrowing or partial blockage of a portion of her duodenum. It could be worse it’s not Duodenal atresia which is a complete blockage or absence of a portion of the duodenum. So she has the better of the two in this situation as well.
We found out that she weighs approximately 1lb-11oz., which is exciting! She’s getting bigger! We also saw that the length of her legs are about a week behind for development. This is common with her having Down syndrome, and not something we are really concerned with right now.
Then I was diagnosed with something new, Polyhydramnios, meaning I have more amniotic fluid than I am supposed to have. This happens in about 1% of all pregnancies (from what I’ve read) and is caused by a number of different things, but is linked with Chromosomal abnormalities, most commonly Trisomy 21, which Vada has been positively diagnosed with (the 2nd part of the amniocentesis came back this last Friday, and is about 99% accurate. This means that my stomach is also going to be bigger than it should be because of the extra fluid.
The polyhydramnio's comes with new risks and concerns for both Vada and I (from what I am reading more her, than me). Pertaining specifically to Vada we want to continue monitoring her to make sure that no fluid ends up in or around her heart. (I'll be going back to Dr. Renfroe’s office in 3 weeks to do another check up on the fluid.) For Vada this could cause heart failure & could also cause poor development in her lung tissue which could lead to her death. With "normal" pregnancies the perinatal mortality rate (PMR) is about 2 out of every 1000. The PMR increases to 4.12 deaths per 1000 pregnancies with polyhydramnios. One thing I will say is that with all of this, it could be even more fatal if she were unable to take in any fluid at all, and we already see that for right now some fluid is passing. With Vada's congenital "defects" it may create a problem down the road with her being able to swallow the fluid, which in return stops the ingesting of amniotic fluid. Making things even more risky than what we are facing at this moment. For now, it’s not an issue we have to deal with. I however feel confident she will be fine. I’m nervous, but not scared, at least not like I was. The majority of what I am telling you is worse case scenario stuff. She doesn’t have it as bad as she could & that is very relieving to Justin and I.
For the pregnancy as a whole this could lead to such issues as (I just copied and pasted this)
* Premature delivery
* PROM (Premature rupture of the membranes- loss of amniotic fluid)
* Placental abruption (the placenta partially or completely peels away from the uterine wall before delivery. Placental abruption is an uncommon and serious complication of pregnancy. The placenta is a structure that develops in the uterus during pregnancy to nourish the growing baby. Placental abruption can deprive the baby of oxygen and nutrients and cause heavy bleeding in the mother. Left untreated, placental abruption puts both mother and baby in jeopardy. Placental abruption is an emergency, requiring immediate medical attention.) - I still need to look into how I would know if this is happening, like the signs I need be aware of. That’s the next step after this update.
* Stillbirth
* Postpartum hemorrhage (severe bleeding after delivery)
* Fetal malposition (the baby is not lying in a head-down position and may need to be delivered by cesarean section)
Right now, as it is, I have been having contractions almost every day. Sometimes I might have a day or so in-between, for the most part it’s everyday. They are not painful, they have just been an uncomfortable tightening feeling, some stronger than others and never four within an hour (which I’ve now been told that is by cut off. It was five.). Sometimes I may only have one or two a day, so don’t think it’s like labor or something… it’s not. :) The contractions are probably being caused by the polyhydramnios . My blood pressure is actually lower than "normal", but I am still swelling, and enough in some areas to leave some pretty lasting indents in my skin (in the ankles, calves, feet area). Because of the swelling I can’t wear any of my shoes that I could before I was pregnant, and I had to take off my wedding rig over a month ago. With my blood pressure being so low, it probably has nothing to do with hypertension (that is high to very high blood pressure), so I’m not for sure how this plays into things. Dr. Renfroe took a look at my ankles today and commented on how she’s going to have to put me in the hospital. Obviously she didn’t, we think she was referring more towards the one thing after another situation that we seem to be in. So now we are also watching that. I will tell you that I drink LOTS of water, and I don’t eat much food with salt or that has been fried! I’ve even stopped eating canned veggies because of all of the sodium. All I know is its worse now that it was a month or so ago, and its worse when I’ve been on my feet for any prolonged period of time. Either way I am glad she took a look and that she is concerned with it. Don’t get me wrong, I don’t want any new problems to deal with, but this has concerned both Justin and I since the first time we noticed it.
After all of the above conversations we then talked about setting a date for delivery. The goal for right now is to get me to 34 weeks. Anything above and beyond that is wonderful. The problem with setting a date is that we would typically set it for 38 weeks, but she thinks we’ll go before then. If I go early there is a big possibility for having a c-section. I was talking to a friend of mine earlier and couldn’t fully answer her question as to why we would probably have a cesarean. That was because I couldn’t remember all that was said during our appointment. Justin had to remind me of what Dr. Renfroe had said about the cesarean. (Originally I wanted a fully natural birth with Vada. I was even trying to talk Justin into doing a home birth, with some guidance from a very smart friend! I actually think I got him close to agreeing.) So, today when Dr. Renfroe brought up scheduling a date, he asked what Dr. Renfroes theories were on Vaginal verses Cesarean. She agreed that vaginal births especially natural ones were the best, especially in babies who have Down syndrome. However, in our case right now Vada is breeched, which could change. If she came early it could put stress on her to go through the labor process. If she was born by cesarean then she could be worked on immediately and we wouldn’t prolong anything. If there ended up being fluid around her heart, again that could lead to more problems if we did have a natural birth. So, it makes sense, at least to us, and for the most part. Things may change, but in all honesty I have lost the drive to do things the way I had really wanted to, or the way I was planning. All I care about is what is best for Vada. Justin and I trust Dr. Renfroe's judgment. She is not a typical doctor, at least not one that Justin and I have ever dealt with. She is laid back and patient, she’s to the point but never makes you feel like we are a case or a number to her; she listens to us, and to all of our concerns. With today’s conversations I didn’t feel like she pushes cesareans just to push them, I felt like she believed that this was in our best interest as of now. So, IF I need to have a cesarean, then so be it. We haven’t scheduled anything yet. I see the peds cardiologist on the 30th then I go over to Dr. Renfroe office for another check up, she said we’ll probably set it up then. We need to see how everything is progressing to get a better idea on how much time she thinks I have.
So for now I am not officially on bed rest. She told me to stay off of my feet whenever I can, and to stay lying down & to keep my feet elevated, but "bed rest" was not a word she used. However, I am listening. I will do my normal picking up the girls from school, doctor’s appointments & the things that I have to, but i’m no longer pushing it. If my back hurts i’m sitting down. If I start swelling worse, i’m sitting down. I won’t be going shopping, unless it is for groceries, I won’t be going for walks, or doing anything that requires me to stands for too long. Her telling me this made Justin feel better because he has been telling me to do the same thing for awhile now.
Overall the appointment wasn’t bad. We received more news that we just need to be aware of, but Justin and I feel okay about everything. For awhile I had a hard time picturing Vada coming home, my fear of losing her made it impossible to see our future with her in it. Now I can imagine our future, not that that means anything, but it makes me more confident that she will be coming home. I’ll just keep holding onto that thought because it makes me stronger. Honestly, I still feel that despite the issues were dealing with, God is helping us and helping Vada. On top of all of that, we have a great mid wife, and wonderful doctors in Peoria. As well as some pretty good friends who are here for us and a a wonderful family to turn to. It all makes us feel a little more at ease, we are blessed.
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