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.
Wednesday, November 25, 2009
Up Date on Vada ~ 2nd trip to Peoria ~ Pediactric Cardiologist
As many of you may have read in our last update on Vada, we went to Peoria last week to meet with a diagnostic doctor in regard to Vada's “distended” stomach. While we were there we learned of a heart “defect” and a stomach “defect”. (I just wanted to mention that I strongly do NOT like the word “defect” when pertaining to our child. She is not a toy, she wasn’t made faulty, and we can’t & wouldn’t if we could return her. God does not make mistakes and for some reason we were given this situation with Vada. We love her and will continue to do so. She is not “defected” to us, so I think they should change that term… but that is just me) With that being said (or vented) Both defects alone are indicators of Down Syndrome, and since Vada has two specific indicators we wanted to know what else we were possibly looking at. So we choose to do the Amniocentesis. The Amniocentesis consisted of two tests, a FISH (Fluorescent In Situ Hybridization), and a Karyotype test. The results for the FISH test came in last Friday, and we are still awaiting the results of the Karyotype. The FISH test came back positive for Down Syndrome. The diagnostic doctor mentioned Trisomy21, so I am assuming that is the cause for the diagnosis. In this update I am going to leave some links at the end, if you are interested in learning about any of the tests that have been done or Vada’s Diagnoses.
Today we took our second trip to Peoria to meet with Vada’s Cardiologist. This visit was not as dramatic as our first, which is a major relief! It was however a long appointment. Three hours to be exact! Two of those hours were the Sonogram/ECHO. It was straining on our nerves because through it all we didn’t get an answer to what we were looking at or for until the very end. Vada’s heart condition has been diagnosed as Transitional Atrioventricular Canal (AV Canal or AVC). In Vada’s case this actually consists of two different issues with her heart. The first being an Atrial Septal Defect – (ASD), this is the largest of the two issues. Atrial septal defect is a “defect” in the septum between the heart’s two upper chambers (atria). Meaning there is a hole in the upper part of her heart where the two chambers connect. The second problem is called a Ventricular Septal Defect (VSD). A ventricular septal defect is a defect in the septum between the right and left ventricle. The septum is a wall that separates the heart’s left and right sides. This is another hole in her heart, although it is smaller than the ASD. The doctor said if we had to choose on whether we would want the hole to be larger on the top, or the bottom, this is how we would want it. Meaning that while the holes in her little heart is NOT a positive thing; we have a better outlook on the situation because of where the holes are situated. If it were reversed, and the largest hole was on the bottom it would be something more extreme than it already is. So as of right now, the doctor said that if this continues to remain the same and not change for the worse then we can hold off on surgery until she is four to six months old. With her having Down Syndrome, it’ll probably be closer to four months, because people with Down Syndrome in general already have issues with their lungs. Plus holding off too long can cause to other serious medical conditions. The recovery on this surgery may be right around three weeks. The doctor also said that as of now she won’t need any medications prior to her surgery to help her heart out, and that in most cases this is a one shot ordeal. So hopefully she won’t need another heart surgery anytime again. After she fully recovers from the heart surgery she should be able to do all “normal” child activities. This all seems positive to us. We will be taking our fourth trip to Peoria on December 30th to meet with this doctor again. (Trip number three is in two weeks with the Diagnostic doctor)We will repeat the procedure that was done today just to make sure everything has stayed the same & then we won’t need to meet with this doctor again until Vada is born.
Justin and I are looking at today’s doctor’s appointment in two different ways. The first is we didn’t learn anything worse than what we’ve already been told. The second is that we have had one of many of our prayers answered (so far). We didn’t want both of her surgeries to be all at once. We also didn’t want them to be as soon as she was born. We are concerned for her strength, and I am saddened by the thought of our baby being so far away, in a hospital with complete strangers. So we are grateful that the heart surgery can be held off for a bit. That will give her time to bond with her family & grow stronger. The surgery on her stomach however, cannot be held off. I’m not for sure if I already mentioned this in the last update, but Vada will need to have surgery on her stomach with in the first three days of her life. The doctor told us that we could hopefully bring Vada home within two weeks after being born. Again with her having Down Syndrome, it may take a little longer. We are trying to figure a way to keep me up there for the majority of this stay. It breaks my heart to think that this is the way she is coming into this world, and I do not want her to be without me & frankly I don’t want to be without her either. At our upcoming doctor’s appointment we’ll be asking about a possible Ronald McDonald house for situations like ours, so we can afford to keep me in Peoria more often than not. If you know of anything please let us know. We would greatly appreciate it!
What we know so far…
Vada has Down Syndrome. She will need surgery on her stomach after being born, and then she will have time to be at home before her second surgery. We will learn more with each appointment & continue to post updates on Vada’s health. Please continue to keep her and our family in your prayers.
GOD'S blessings and Peace,
Tara & Justin
SITES:
Atrioventricular Canal (AV Canal or AVC)
http://www.healthsystem.virginia.edu/uvahealth/peds_cardiac/avc.cfm
Atrial Septal Defect (ASD) http://www.americanheart.org/presenter.jhtml?identifier=11065
Ventricular Septal Defect (VSD) http://www.americanheart.org/presenter.jhtml?identifier=11066
What is an amniocentesis?
http://www.healthsystem.virginia.edu/UVaHealth/peds_hrpregnant/amnio.cfm
What is a Fluorescent In Situ Hybridization or FISH Analysis?
http://downsyndrome.about.com/od/diagnosingdownsyndrome/a/FISHarticle.htm
Prenatal Testing for Down Syndrome
http://downsyndrome.about.com/od/diagnosingdownsyndrome/a/Amnio_ro.htm
What Causes Down Syndrome? http://downsyndrome.about.com/od/whatcausesdownsyndrome/a/Causeintro_ro.htm
http://www.medicinenet.com/down_syndrome/article.htm
Today we took our second trip to Peoria to meet with Vada’s Cardiologist. This visit was not as dramatic as our first, which is a major relief! It was however a long appointment. Three hours to be exact! Two of those hours were the Sonogram/ECHO. It was straining on our nerves because through it all we didn’t get an answer to what we were looking at or for until the very end. Vada’s heart condition has been diagnosed as Transitional Atrioventricular Canal (AV Canal or AVC). In Vada’s case this actually consists of two different issues with her heart. The first being an Atrial Septal Defect – (ASD), this is the largest of the two issues. Atrial septal defect is a “defect” in the septum between the heart’s two upper chambers (atria). Meaning there is a hole in the upper part of her heart where the two chambers connect. The second problem is called a Ventricular Septal Defect (VSD). A ventricular septal defect is a defect in the septum between the right and left ventricle. The septum is a wall that separates the heart’s left and right sides. This is another hole in her heart, although it is smaller than the ASD. The doctor said if we had to choose on whether we would want the hole to be larger on the top, or the bottom, this is how we would want it. Meaning that while the holes in her little heart is NOT a positive thing; we have a better outlook on the situation because of where the holes are situated. If it were reversed, and the largest hole was on the bottom it would be something more extreme than it already is. So as of right now, the doctor said that if this continues to remain the same and not change for the worse then we can hold off on surgery until she is four to six months old. With her having Down Syndrome, it’ll probably be closer to four months, because people with Down Syndrome in general already have issues with their lungs. Plus holding off too long can cause to other serious medical conditions. The recovery on this surgery may be right around three weeks. The doctor also said that as of now she won’t need any medications prior to her surgery to help her heart out, and that in most cases this is a one shot ordeal. So hopefully she won’t need another heart surgery anytime again. After she fully recovers from the heart surgery she should be able to do all “normal” child activities. This all seems positive to us. We will be taking our fourth trip to Peoria on December 30th to meet with this doctor again. (Trip number three is in two weeks with the Diagnostic doctor)We will repeat the procedure that was done today just to make sure everything has stayed the same & then we won’t need to meet with this doctor again until Vada is born.
Justin and I are looking at today’s doctor’s appointment in two different ways. The first is we didn’t learn anything worse than what we’ve already been told. The second is that we have had one of many of our prayers answered (so far). We didn’t want both of her surgeries to be all at once. We also didn’t want them to be as soon as she was born. We are concerned for her strength, and I am saddened by the thought of our baby being so far away, in a hospital with complete strangers. So we are grateful that the heart surgery can be held off for a bit. That will give her time to bond with her family & grow stronger. The surgery on her stomach however, cannot be held off. I’m not for sure if I already mentioned this in the last update, but Vada will need to have surgery on her stomach with in the first three days of her life. The doctor told us that we could hopefully bring Vada home within two weeks after being born. Again with her having Down Syndrome, it may take a little longer. We are trying to figure a way to keep me up there for the majority of this stay. It breaks my heart to think that this is the way she is coming into this world, and I do not want her to be without me & frankly I don’t want to be without her either. At our upcoming doctor’s appointment we’ll be asking about a possible Ronald McDonald house for situations like ours, so we can afford to keep me in Peoria more often than not. If you know of anything please let us know. We would greatly appreciate it!
What we know so far…
Vada has Down Syndrome. She will need surgery on her stomach after being born, and then she will have time to be at home before her second surgery. We will learn more with each appointment & continue to post updates on Vada’s health. Please continue to keep her and our family in your prayers.
GOD'S blessings and Peace,
Tara & Justin
SITES:
Atrioventricular Canal (AV Canal or AVC)
http://www.healthsystem.virginia.edu/uvahealth/peds_cardiac/avc.cfm
Atrial Septal Defect (ASD) http://www.americanheart.org/presenter.jhtml?identifier=11065
Ventricular Septal Defect (VSD) http://www.americanheart.org/presenter.jhtml?identifier=11066
What is an amniocentesis?
http://www.healthsystem.virginia.edu/UVaHealth/peds_hrpregnant/amnio.cfm
What is a Fluorescent In Situ Hybridization or FISH Analysis?
http://downsyndrome.about.com/od/diagnosingdownsyndrome/a/FISHarticle.htm
Prenatal Testing for Down Syndrome
http://downsyndrome.about.com/od/diagnosingdownsyndrome/a/Amnio_ro.htm
What Causes Down Syndrome? http://downsyndrome.about.com/od/whatcausesdownsyndrome/a/Causeintro_ro.htm
http://www.medicinenet.com/down_syndrome/article.htm
Tuesday, November 24, 2009
Update on Vada ~ Trip #1 to Peoria ~ Diagnostic Doctor
I am writing this to give you an update on Vada. I first want to thank all of our friends and family who have been so supportive these past couple of days. Many of you have opened yourselves up to us & we appreciate it completely. As of right now there is not a whole lot anyone can do, but pray. Towards the end of this pregnancy I am sure that it’ll become very busy & we are grateful to have all of you to turn to. Thank you for your love, your friendship and your kindness. Mostly, thank you for your prayers.
As most of you may know this past Monday Justin and I took a trip down to Peoria to the St. Francis Diagnostic clinic. About three weeks ago our mid wife, Rita found an abnormality in Vada’s stomach that had concerned her. After a second sonogram confirming that whatever was seen in the original sonogram was still there, Rita referred us to Peoria. Justin and I were pretty confident that I personally was just over reacting and that everything was going to be confirmed to be “okay” or “normal”. (Just another FYI, I personally have been a nervous wreck this whole pregnancy. There has been one concern after another. So, when Rita told us about this abnormality, I started researching immediately. Which probably just scared me more, but I am one of those people who need to know. I am impatient when it comes to finding out news, especially if it has the potential to be on the negative side & is pertaining to my family. That’s why I mentioned me over reacting. Believe me, I have been told on a number of occasions, in not so many words that I was in deed over reacting.) I wish in this case I could have just been told that I was over reacting. I would have felt like a fool, which wouldn’t have been the first time, but then I could have moved on being happy.
During our appointment we received an extensive 3D/4D sonogram. It took about a half hour or so, and when the sonographer was finished the doctor came in almost immediately. The doctor began scanning my stomach to show us the areas of her concern with Vada. The first thing was what we had originally come down to Peoria for, Vada’s stomach. The second area, something we weren’t expecting was Vada’s heart. The doctors do have an idea of what both abnormalities are, but until we are for sure, or until Vada has been diagnosed, I am not going to mention any terms that were given to us, yet.
Vada’s stomach looks like the opening to where her stomach would start to digest and then pass along food is too narrow. (Honestly, I am not 100% for sure that I am explaining this part correctly, but I think it’s fairly close) As we were watching the sonogram the doctor stopped to let us see that Vada was actually pushing, we could see her little body tense and un-tense, she was trying to get things to pass, but it wasn’t working. Now, obviously she is getting food, because she is growing (1lb-1oz. now), and she is “passing” fluids to some extent, she is just having a very difficult time. Then the Doctor scanned to her heart. This too is hard for me to put into words. Where part of her heart is supposed to meet another part, it isn’t. It kind of flapping. We were given a “suspected” term for this also. The doctor said that more than likely she will need surgery on both after being born, and that we would need to birth Vada in Peoria, verses our home town. We’re hoping that if surgery is needed, to do her stomach first and hold off on her heart for awhile to let her body get stronger. We will have a better idea as time passes, but we won’t know everything for sure until Vada is born.
The doctor also said that she would like to perform another test, an amniocentesis. I had originally declined this test b/c I didn’t feel it was necessary, and in many cases I still don’t think that it is. This test consists of taking amniotic fluid from the uterus. It is done by a sonogram guided needle, and it carries a risk (from what I have read) of 1 out 125 pregnancies that will rupture and cause a miscarriage. For our situation, when the doctor said she wanted to do it, we understood why. So, we had the test, and shortly after were released to go home. About 15 minutes outside of Peoria, we thought that I was leaking fluid, so we called back to the diagnostic center and was told to go to the E.R. We were admitted and in the beginning I was monitored, because I had started to have contractions. (The contractions btw, are considered somewhat “normal” after having an amniocentesis done.) We checked ourselves out of the hospital and came home around 9pm. We’re pretty for sure that it was not my fluid, since there has been nothing since. My contractions stopped for the most part during the night, and I only experienced two more yesterday.
So, now we wait. We will get the results back on the amino test within the next 3 weeks. However, this test is not 100%, there have been many cases where couples are told one thing and it turns out to be just fine. What we do know is Vada is alive, and she seems so strong to Justin and I. We know she is growing every day, and that regardless of what may or may not be happening, she is still our gift from God, and we will love her no matter what may happen. We know that there is an abnormality in her heart and in her stomach. That’s it, everything else is just speculation. Justin and I will be going back to Peoria this coming Tuesday. We will have our first meeting with the doctor who will be our Pediatric Cardiologist. We may know more then. I will continue my care with our Mid Wife Rita, as well as meet with the Peoria doctors monthly. I have re started my hormone injections because we need to keep Vada “in” as long as my body can hold her. With my past of pre term labor this is the best idea. The stronger she is the better. I’ve been off of the injections for around 3 weeks, and I have noticed some difference in myself. I am defiantly more sensitive, cranky & just blah on the injections, so my here’s my pre-apologies. :)
With all of this being said, whatever happens is not in our hands, we have no choice in this matter, and that is how we look at it. God is in control here, this is all his will, and this is our child, we love her no matter what. Please keep us in your prayers, praying really does make a difference. We know that God is listening. We understand that there is a reason for what is happening, we may not understand why, but we are not angry, we are however scared, and it hurts just as it would for anyone.
We will continue to keep you updated on what is happening & what we are finding out with Vada. Like I said already, the majority of what we find out will be after her birth. Thank you again to all of our friends, and family.
As most of you may know this past Monday Justin and I took a trip down to Peoria to the St. Francis Diagnostic clinic. About three weeks ago our mid wife, Rita found an abnormality in Vada’s stomach that had concerned her. After a second sonogram confirming that whatever was seen in the original sonogram was still there, Rita referred us to Peoria. Justin and I were pretty confident that I personally was just over reacting and that everything was going to be confirmed to be “okay” or “normal”. (Just another FYI, I personally have been a nervous wreck this whole pregnancy. There has been one concern after another. So, when Rita told us about this abnormality, I started researching immediately. Which probably just scared me more, but I am one of those people who need to know. I am impatient when it comes to finding out news, especially if it has the potential to be on the negative side & is pertaining to my family. That’s why I mentioned me over reacting. Believe me, I have been told on a number of occasions, in not so many words that I was in deed over reacting.) I wish in this case I could have just been told that I was over reacting. I would have felt like a fool, which wouldn’t have been the first time, but then I could have moved on being happy.
During our appointment we received an extensive 3D/4D sonogram. It took about a half hour or so, and when the sonographer was finished the doctor came in almost immediately. The doctor began scanning my stomach to show us the areas of her concern with Vada. The first thing was what we had originally come down to Peoria for, Vada’s stomach. The second area, something we weren’t expecting was Vada’s heart. The doctors do have an idea of what both abnormalities are, but until we are for sure, or until Vada has been diagnosed, I am not going to mention any terms that were given to us, yet.
Vada’s stomach looks like the opening to where her stomach would start to digest and then pass along food is too narrow. (Honestly, I am not 100% for sure that I am explaining this part correctly, but I think it’s fairly close) As we were watching the sonogram the doctor stopped to let us see that Vada was actually pushing, we could see her little body tense and un-tense, she was trying to get things to pass, but it wasn’t working. Now, obviously she is getting food, because she is growing (1lb-1oz. now), and she is “passing” fluids to some extent, she is just having a very difficult time. Then the Doctor scanned to her heart. This too is hard for me to put into words. Where part of her heart is supposed to meet another part, it isn’t. It kind of flapping. We were given a “suspected” term for this also. The doctor said that more than likely she will need surgery on both after being born, and that we would need to birth Vada in Peoria, verses our home town. We’re hoping that if surgery is needed, to do her stomach first and hold off on her heart for awhile to let her body get stronger. We will have a better idea as time passes, but we won’t know everything for sure until Vada is born.
The doctor also said that she would like to perform another test, an amniocentesis. I had originally declined this test b/c I didn’t feel it was necessary, and in many cases I still don’t think that it is. This test consists of taking amniotic fluid from the uterus. It is done by a sonogram guided needle, and it carries a risk (from what I have read) of 1 out 125 pregnancies that will rupture and cause a miscarriage. For our situation, when the doctor said she wanted to do it, we understood why. So, we had the test, and shortly after were released to go home. About 15 minutes outside of Peoria, we thought that I was leaking fluid, so we called back to the diagnostic center and was told to go to the E.R. We were admitted and in the beginning I was monitored, because I had started to have contractions. (The contractions btw, are considered somewhat “normal” after having an amniocentesis done.) We checked ourselves out of the hospital and came home around 9pm. We’re pretty for sure that it was not my fluid, since there has been nothing since. My contractions stopped for the most part during the night, and I only experienced two more yesterday.
So, now we wait. We will get the results back on the amino test within the next 3 weeks. However, this test is not 100%, there have been many cases where couples are told one thing and it turns out to be just fine. What we do know is Vada is alive, and she seems so strong to Justin and I. We know she is growing every day, and that regardless of what may or may not be happening, she is still our gift from God, and we will love her no matter what may happen. We know that there is an abnormality in her heart and in her stomach. That’s it, everything else is just speculation. Justin and I will be going back to Peoria this coming Tuesday. We will have our first meeting with the doctor who will be our Pediatric Cardiologist. We may know more then. I will continue my care with our Mid Wife Rita, as well as meet with the Peoria doctors monthly. I have re started my hormone injections because we need to keep Vada “in” as long as my body can hold her. With my past of pre term labor this is the best idea. The stronger she is the better. I’ve been off of the injections for around 3 weeks, and I have noticed some difference in myself. I am defiantly more sensitive, cranky & just blah on the injections, so my here’s my pre-apologies. :)
With all of this being said, whatever happens is not in our hands, we have no choice in this matter, and that is how we look at it. God is in control here, this is all his will, and this is our child, we love her no matter what. Please keep us in your prayers, praying really does make a difference. We know that God is listening. We understand that there is a reason for what is happening, we may not understand why, but we are not angry, we are however scared, and it hurts just as it would for anyone.
We will continue to keep you updated on what is happening & what we are finding out with Vada. Like I said already, the majority of what we find out will be after her birth. Thank you again to all of our friends, and family.
Thursday, November 5, 2009
Our Vada
So, this pregnancy has had its ups and downs from the very beginning. Needless to say, everything has turned out, so far, to be just fine. However, our newest concern was brought to our attition Last week during our 20 week routine sonogram. Vada's little belly is distended & during our 1st u/s her bladder was pretty empty. So our mid wife wanted to check again to see if any changes had occured. So we had a 2nd u/s ( I am using 1st & 2nd very loosely, we have had more u/s & honestly I lost count of what number these would be technically be) which was this past Tuesday. Vada's belly was still distended, so this is being considered an abnormality b/c we (including the midwife) are not for sure why her belly is like this. Its not overly huge, its just not the size it should be.
The one thing we know is it seems like this is the only abnormality were looking at, which is great. It rules out a lot of possibilities, at least this is our understanding of the situation so far. The next step is to go to St. Francis in Peoria. Rita said that they have an u/s machine that could tell if Vada had a hang nail. I never knew that was possible, but if she says it I believe it. Justin & I are hoping the answers we are looking for will come from what happens during this trip to Peoria. However, it may be one of those things that we'll have to wait until Vada's is born to find out.Whatever the case, I feel a little more confident that things are going to be okay.
Yesterday and today was horrible. The waiting and the not know was such a horrible feeling. Its hard to not let your thoughts travel to the worst side of things. However, I feel that I have been blessed with a wonderful husband and family, wonderful friends, and a wonderful mid-wife who is on top of things & is caring! Thank you to everyone for your prayers & your time that you have given to help out. Thank you for your love, support & for your advice! Please continue to pray, I truly believe that your prayers do wonders!
The one thing we know is it seems like this is the only abnormality were looking at, which is great. It rules out a lot of possibilities, at least this is our understanding of the situation so far. The next step is to go to St. Francis in Peoria. Rita said that they have an u/s machine that could tell if Vada had a hang nail. I never knew that was possible, but if she says it I believe it. Justin & I are hoping the answers we are looking for will come from what happens during this trip to Peoria. However, it may be one of those things that we'll have to wait until Vada's is born to find out.Whatever the case, I feel a little more confident that things are going to be okay.
Yesterday and today was horrible. The waiting and the not know was such a horrible feeling. Its hard to not let your thoughts travel to the worst side of things. However, I feel that I have been blessed with a wonderful husband and family, wonderful friends, and a wonderful mid-wife who is on top of things & is caring! Thank you to everyone for your prayers & your time that you have given to help out. Thank you for your love, support & for your advice! Please continue to pray, I truly believe that your prayers do wonders!
Thursday, May 7, 2009
God at School not allowed???
by Tara Wilson on Thursday, May 7, 2009 at 11:34pm
A few days ago Jasmine came home very excited, her and some of her friends decided that during recess they were going to start a Bible Club. I know to some this may not mean much, but to me, I was sooo proud. This was so amazing to me. They are third graders, and during their recess, their play time they chose this.
Yesterday Jasmine and one pf her friends that was coming home with us came to the car even more excited, another girl in that group had brought mini Bibles for each girl. Their plan was to sit and read a verse, talk about it and then pray together. Again, my heart melts.
However, today Jasmine came home very upset. It seems that this is not allowed at school. The girls were supposedly told that they should be playing during recess, not doing this. Which frustrates me, because its okay to sit "on the wall" and do nothing, but its not okay to pray? I don't get that. Who are they hurting? Its not like they are preaching to others, or telling others that "this is the only way." At least I believe Jasmine wouldn't do that. Our beliefs are our own, and so to us it is the same for everyone else. I believe that we have taught our children that we are not to judge others, its not our place.
Anyway, I know that its not allowed for teachers to press religion, but I am wondering if its also not okay to allow children to do something like this, on their own free will.
I like the staff at Jasmine and Kilieghs school. So I am not trying to start any problems, I just don't believe to to be just. There are only a few weeks left of school, should I let it go? Should I bring it up to the principle? She is supposedly the one who put a stop to all of this. Is against some law, or rule?
I feel that by telling these girls that they are not allowed to pray at school, that they are receiving a message that God is in some way bad. What do all of you think???
A few days ago Jasmine came home very excited, her and some of her friends decided that during recess they were going to start a Bible Club. I know to some this may not mean much, but to me, I was sooo proud. This was so amazing to me. They are third graders, and during their recess, their play time they chose this.
Yesterday Jasmine and one pf her friends that was coming home with us came to the car even more excited, another girl in that group had brought mini Bibles for each girl. Their plan was to sit and read a verse, talk about it and then pray together. Again, my heart melts.
However, today Jasmine came home very upset. It seems that this is not allowed at school. The girls were supposedly told that they should be playing during recess, not doing this. Which frustrates me, because its okay to sit "on the wall" and do nothing, but its not okay to pray? I don't get that. Who are they hurting? Its not like they are preaching to others, or telling others that "this is the only way." At least I believe Jasmine wouldn't do that. Our beliefs are our own, and so to us it is the same for everyone else. I believe that we have taught our children that we are not to judge others, its not our place.
Anyway, I know that its not allowed for teachers to press religion, but I am wondering if its also not okay to allow children to do something like this, on their own free will.
I like the staff at Jasmine and Kilieghs school. So I am not trying to start any problems, I just don't believe to to be just. There are only a few weeks left of school, should I let it go? Should I bring it up to the principle? She is supposedly the one who put a stop to all of this. Is against some law, or rule?
I feel that by telling these girls that they are not allowed to pray at school, that they are receiving a message that God is in some way bad. What do all of you think???
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