Pediatric Cardiologist update: Leigh was supposed to get to go to this appointment to meet the Dr. and hopefully understand more of what's going on with our baby girl, but when he got home, the van wouldn't start. He very quickly pulled the car over and tried to jump it, but to no avail, so I ended up going alone. I greatly dislike going to the doctor's alone. Anyways, everything they saw was the same, the Dr. didn't think that the baby has a VSD. There was one section of the wall on the ultrasound that kept going in and out, but there wasn't any flow between it, so he thinks it was just the angle at which they were looking. He said they studied the pictures for a long time after I left last time and counted different beats and stuff. She has 2nd degree heart block. I'm not quite sure what this means for her, I think it's still a wait and see type thing. Her heart will beat slower than it should, so it still kind of depends on how she is able to adapt to that along with the other things wrong with her heart.
The dr. didn't know exactly what the immediate birth plan and such would be like as far as rushing her off to the NICU, etc. He thought that as long as she handled everything fine, it would be reasonable for them to only keep her about 24 hrs. in the NICU for observation and to run tests and stuff (EKG and heart ultrasounds specifically, not sure what else) and then transition her back to the nursery. In the third trimester he presents each case to the neonatologists and other drs. at the hospital and they determine a plan of action. With our little girl, it's different because she won't be needing surgery as far as we know, so our Ped. Card. isn't quite sure what they'll recommend, or how aggressive they'll be. He said several times that her biggest transition would be right after she's born and the blood flow changes to just her heart. So, we're praying that she adjusts well and everything regulates properly. Hopefully he'll have a little more of an idea what to expect at our next appointment.
(Leigh charged the van's battery and it has worked fine since then) :)
Thursday, March 21, 2013
Tuesday, March 12, 2013
Checkups
I finally found a Pediatrician for the kids!! Yes, we've been down here a year and a half and yes, it's been two years since their last checkups (at least the older three). A friend recommended a Ped. and so I thought I would go with him, but she didn't like the lady Ped in the group and there was one other fellow that she said was "ok". We were down here like a month or two and Timothy came down with an obvious ear infection, that kept me and him up the entire night, so I decided he had to go to the Dr. I called to schedule an appt. and the only doctor there was the other fellow. This fellow diagnosed and him and gave me a prescription and we went on our merry way. They did not say to come back for a follow-up in two weeks, like I had been told by our previous doctor, so I didn't bother since we just had temporary insurance. So, about six weeks later we had to go see him again because Timothy had another ear infection! He was put on a stronger antibiotic and he told me if he had another ear infection within a month or two, they would want to put tubes in his ears! I was not very happy especially seeing as how this was T's first ear infection and he was almost a year old! Anyways, somewhere in there I took him for his 18 month checkup. Every appointment I was pestered with getting them all the flu shot and T the hepatitis A shot (which none of the other kids had, and I didn't realize they had added that one) And I waited FOREVER in the room they put you in to see the doctor. For Timothy's18 month checkup (for one child) I was there for over two hours, AND I had made the appointment in the morning, thinking it would be faster. The sick visits I can understand taking a little longer because they fit us in, but a scheduled checkup to take that long seemed ridiculous. So I never took the other kids for their checkups.
The beginning of the year we were at the dentist and they were updating L and E's info. in their system and one of the questions was when their last checkup was. I realized it had been two years and the lady was really nice, so I asked her if she recommended a Ped. She didn't have kids, but she knew a lady that was a Ped that brought her kids to the dentist She went on and on about how nice she was, so she gave me her name and number of the Pediatric group. I scheduled an appointment for the beginning of March, just to give our insurance time to adjust everything and send us our new cards for the new year etc.
So far I really like her and the receptionist and the nurses! They were so patient with us. I knew it would be a long appointment just due to the fact that there were four being seen and we were new patients and all. I made sure to get there early to fill out paperwork, etc. I ended having to talk to our insurance company and change the kids pediatrician to this new dr., which I had already done in Jan or beginning of Feb because the Dr. office wouldn't let me make an appointment until I had done that. So that was annoying of the ins. company.
They took the kids and weighed and measured them while I finished filling out paperwork, and then they put us in a room and the doctor came in before too long and did checkups on all of them.
Luke is in the 3rd percentile for weight and between the 25-30th for height. He's always been "too skinny" but he made it on the chart! :) He had to get two shots and they did a blood draw, he was not happy about either one of these and almost flat out refused, but we got it done. He passed his hearing screening, and his highlight was that he didn't pass his eye screening and will have to have glasses!
Emily is in the 20th percentile for weight and the 50th percentile for height. She's just a tad lighter and shorter than Luke! She also got a blood draw and got one shot. She was trooper and didn't say a word about any of it. She also failed her eye screening, so they're both scheduled to see an eye doctor in the next few months. She doesn't seem too thrilled with the idea of glasses, but she hasn't said a whole lot about it.
Josiah is in the 10th percentile for weight and 5th percentile for height. He's a shorty I guess. :) I knew he must be on the shorter side because he's 4 1/2 and still wearing size 3 pants. He got a finger stick to check his iron and five shots! Poor baby! He did really well and didn't cry until the last two, which were the ones that burn. :( I figured he was due a lot because he needed his "school" shots. He passed both his eye and hearing screening, so that was good. I wasn't sure they would do a eye screening for him, so I'm glad they did.
Timothy is in the 25th percentile for weight and the 40th for height. He got a finger stick and one shot. He did a good job and only cried a little.
I was glad they did the hearing and eye screening. I wasn't sure that they would because lots of times those are done at school. The dr. was very kind and patient and asked about any concerns or questions with each child. She was also very thorough. The three older kids also had to leave a urine sample, which was a first for us, so they got lectured (from mommy) about how we DO NOT EVER do this at home. :)
Our whole appointment took us three hours, which I thought was pretty good seeing as how we had so much to do! We didn't sit for very long between activities so that was nice! Overall it was a very positivie experience. I don't think I made the checkout lady very happy. She wanted to schedule a 2 1/2 year checkup for Timothy. I declined seeing as how he turns 2 1/2 in three months, I didn't think it was necessary. Oh, well! So, YAY, they have been declared healthy and caught up on everything for another year. And the doctor told me I am blessed to have four seemingly happy and healthy children with which I wholeheartedly agree!!!!
The beginning of the year we were at the dentist and they were updating L and E's info. in their system and one of the questions was when their last checkup was. I realized it had been two years and the lady was really nice, so I asked her if she recommended a Ped. She didn't have kids, but she knew a lady that was a Ped that brought her kids to the dentist She went on and on about how nice she was, so she gave me her name and number of the Pediatric group. I scheduled an appointment for the beginning of March, just to give our insurance time to adjust everything and send us our new cards for the new year etc.
So far I really like her and the receptionist and the nurses! They were so patient with us. I knew it would be a long appointment just due to the fact that there were four being seen and we were new patients and all. I made sure to get there early to fill out paperwork, etc. I ended having to talk to our insurance company and change the kids pediatrician to this new dr., which I had already done in Jan or beginning of Feb because the Dr. office wouldn't let me make an appointment until I had done that. So that was annoying of the ins. company.
They took the kids and weighed and measured them while I finished filling out paperwork, and then they put us in a room and the doctor came in before too long and did checkups on all of them.
Luke is in the 3rd percentile for weight and between the 25-30th for height. He's always been "too skinny" but he made it on the chart! :) He had to get two shots and they did a blood draw, he was not happy about either one of these and almost flat out refused, but we got it done. He passed his hearing screening, and his highlight was that he didn't pass his eye screening and will have to have glasses!
Emily is in the 20th percentile for weight and the 50th percentile for height. She's just a tad lighter and shorter than Luke! She also got a blood draw and got one shot. She was trooper and didn't say a word about any of it. She also failed her eye screening, so they're both scheduled to see an eye doctor in the next few months. She doesn't seem too thrilled with the idea of glasses, but she hasn't said a whole lot about it.
Josiah is in the 10th percentile for weight and 5th percentile for height. He's a shorty I guess. :) I knew he must be on the shorter side because he's 4 1/2 and still wearing size 3 pants. He got a finger stick to check his iron and five shots! Poor baby! He did really well and didn't cry until the last two, which were the ones that burn. :( I figured he was due a lot because he needed his "school" shots. He passed both his eye and hearing screening, so that was good. I wasn't sure they would do a eye screening for him, so I'm glad they did.
Timothy is in the 25th percentile for weight and the 40th for height. He got a finger stick and one shot. He did a good job and only cried a little.
I was glad they did the hearing and eye screening. I wasn't sure that they would because lots of times those are done at school. The dr. was very kind and patient and asked about any concerns or questions with each child. She was also very thorough. The three older kids also had to leave a urine sample, which was a first for us, so they got lectured (from mommy) about how we DO NOT EVER do this at home. :)
Our whole appointment took us three hours, which I thought was pretty good seeing as how we had so much to do! We didn't sit for very long between activities so that was nice! Overall it was a very positivie experience. I don't think I made the checkout lady very happy. She wanted to schedule a 2 1/2 year checkup for Timothy. I declined seeing as how he turns 2 1/2 in three months, I didn't think it was necessary. Oh, well! So, YAY, they have been declared healthy and caught up on everything for another year. And the doctor told me I am blessed to have four seemingly happy and healthy children with which I wholeheartedly agree!!!!
Thursday, March 7, 2013
Update
This is just a quick update. I went to the Perinatologist yesterday because they didn't see me on Friday when I went for my first ultrasound. I was slightly concerned because they called Monday and wanted to get me in ASAP. He read to us what the pediatric cardiologist sent over that it was good prognosis, he also scanned and specifically looked at the brain, lips, hands, feet, and spine and said that everything looked good and normal! This kind of heart defect is not commonly associated with chromosomal abnormalities, so at this time we're not doing the amniocentesis or the blood test that tests for trisomy 13,18, or 21 and both the Perinatologist and Pediatric Cardiologist seem comfortable with that since there doesn't seem to be any other abnormalities. I will continue to be seen by both. The Perinatologist said his job is to make sure the baby is growing at a proper rate and possibly give advice to the OB for delivery, or whatever becomes necessary. I also have a slight placenta previa (which is where the placenta is over the cervix a little bit) which I think it should move up as the pregnancy progresses. If it doesn't it just means we'll have a c-section.
I felt encouraged and more positive after this visit, just that everything was confirmed and they all seemed to be on the same page. And that the doctor looked specifically at everything else and that both doctors were ok with not doing further testing. We are very, very thankful that everything else looks fine. I'm still praying that nothing else is wrong with her heart, I'm going to ask specifically at the next cardiologist appointment if he sees anything or not, but as far as we know they didn't find anything else last time. We go in a little over a week.
Thank you to everyone for praying. We GREATLY appreciate it! So glad that God is in control and we can trust in Him no matter what.
I felt encouraged and more positive after this visit, just that everything was confirmed and they all seemed to be on the same page. And that the doctor looked specifically at everything else and that both doctors were ok with not doing further testing. We are very, very thankful that everything else looks fine. I'm still praying that nothing else is wrong with her heart, I'm going to ask specifically at the next cardiologist appointment if he sees anything or not, but as far as we know they didn't find anything else last time. We go in a little over a week.
Thank you to everyone for praying. We GREATLY appreciate it! So glad that God is in control and we can trust in Him no matter what.
Sunday, March 3, 2013
It's a...complicated....
GIRL!!! We're very excited to have found out a few days ago that we're having another baby girl. I think we had all convinced ourselves it would a boy! So what a fun surprise. Luke and Emily have always wanted another sister with each pregnancy and then Josiah said we needed another girl, because there were too many boys!
However, while I was at my routine ultrasound the babies heart had an arrhythmia, so they referred me to a pediatric cardiologist for a more detailed heart ultrasound. They actually had an opening right away and so we were able to go right from the ultrasound appointment to see the pediatric cardiologist. There were two ladies that were doing the ultrasound of the babies heart and while they were doing that they were mumbling to each other the whole time. A lot of what they said was trying to figure out the right of the heart from the left of the heart and then switching it around for some reason and trying to decide which arteries came from which side, etc. They also mentioned the words "Conference Room" (which in my opinion sounds scary) and he's going to want to scan it himself (referring to the doctor). By this point I had about decided it was bad and everything was mixed up. So then the doctor came in went over a little history, etc, mostly normal stuff and then he started looking at the ultrasound pictures on the machine. It took him about 30 minutes with one of the ladies that did the scan showing him different things and how they came their conclusions. So they stood there and mumbled to each other-THAT was a very long 30 minutes. Of course every possible scenario of anything that could possibly be wrong goes through your head while you sit there and try to listen and make heads or tails out of what they're saying. Then he had her scan some more while he watched and they took some more pictures.
Then he gave us our baby's diagnoses. I'll try to be brief. The first thing he told us is that she has Dextrocardia, which basically is instead of her heart being pointed toward the left of the chest (which would be normal) it points to the right and is a mirror image of what it should be. After looking it up online it looks like there could be a lot of other things that go along with that, but he did not mention any of that, so I think as far as that diagnosis is concerned it's very basic and nonproblematic.
The next diagnosis he gave her is Congenitally Corrected Translocation of the Great Arteries (CCTGA). I'm not going to use right or left in regard to ventricles because her heart is backwards and it gets very confusing even though they're referred to backwards (We're already confused, see?) So in a normal heart the larger ventricle is connected to the aorta and pumps blood the the entire body, the smaller ventricle is connected to the pulmonary artery and pumps blood to the lungs; In our baby girls heart, the arteries are switched, the larger ventricle pumps to the lungs and the smaller ventricle pumps to the body. There can be complications with this in regards to too much pressure to the lungs and in the arteries there, the smaller ventricle having to work too hard and not adapting well, as well as some other things. They don't usually do surgery for this type of defect, it could come to that as well as heart failure and needing a heart transplant, but for the most part a lot of it can be helped with different medications and such.
Her other diagnosis because of the CCTGA is a problem with the electrical pathways not triggering properly which causes arrhythmias and can potentially cause heart block in which case a pacemaker would be necessary.
My understanding of what the doctor told us. There is a very good prognosis. Some people don't even know that they have this and have lived long normal lives. There would be monitoring and watching over the years. As long as her body and heart are able to adapt to the different pressures and function well, she should be able to do whatever she wants to. He talked like it would be over time (several years) before we would have to treat anything, of course that would depend on how she did right after birth and such I would think. If she adjusted well and seemed to do okay we would just monitor and it would either stay the same or be a gradual decline. He said if her heart starts to have problems it would be a gradual thing, not sudden. At this point I think that is all that's wrong with her. He did not mention any other heart abnormalities or anything that could go along with this. We are going back in two weeks for another ultrasound, so hopefully everything will be clear and there will be a definite there's nothing else wrong.
It's been a lot to process and figure out, but I think we're doing ok. God is good all the time. It's not just a saying it's truth. He has a plan and a purpose in it all and we firmly believe that. I hope and pray that it's not His plan to take our baby girl to Heaven soon, but if it is I know He'll give us the grace and strength to deal with that as well. I puzzle over trying to find the balance between being hopeful and having faith that she will be well and healthy, yet being realistic, yet not worrying.
Here are some links I found helpful that explain it fairly well:
http://www.chop.edu/service/cardiac-center/heart-conditions/congenitally-corrected-transposition-of-the-great-arteries.html
http://www.achaheart.org/resources/for-patients/health-information/cctga.aspx
However, while I was at my routine ultrasound the babies heart had an arrhythmia, so they referred me to a pediatric cardiologist for a more detailed heart ultrasound. They actually had an opening right away and so we were able to go right from the ultrasound appointment to see the pediatric cardiologist. There were two ladies that were doing the ultrasound of the babies heart and while they were doing that they were mumbling to each other the whole time. A lot of what they said was trying to figure out the right of the heart from the left of the heart and then switching it around for some reason and trying to decide which arteries came from which side, etc. They also mentioned the words "Conference Room" (which in my opinion sounds scary) and he's going to want to scan it himself (referring to the doctor). By this point I had about decided it was bad and everything was mixed up. So then the doctor came in went over a little history, etc, mostly normal stuff and then he started looking at the ultrasound pictures on the machine. It took him about 30 minutes with one of the ladies that did the scan showing him different things and how they came their conclusions. So they stood there and mumbled to each other-THAT was a very long 30 minutes. Of course every possible scenario of anything that could possibly be wrong goes through your head while you sit there and try to listen and make heads or tails out of what they're saying. Then he had her scan some more while he watched and they took some more pictures.
Then he gave us our baby's diagnoses. I'll try to be brief. The first thing he told us is that she has Dextrocardia, which basically is instead of her heart being pointed toward the left of the chest (which would be normal) it points to the right and is a mirror image of what it should be. After looking it up online it looks like there could be a lot of other things that go along with that, but he did not mention any of that, so I think as far as that diagnosis is concerned it's very basic and nonproblematic.
The next diagnosis he gave her is Congenitally Corrected Translocation of the Great Arteries (CCTGA). I'm not going to use right or left in regard to ventricles because her heart is backwards and it gets very confusing even though they're referred to backwards (We're already confused, see?) So in a normal heart the larger ventricle is connected to the aorta and pumps blood the the entire body, the smaller ventricle is connected to the pulmonary artery and pumps blood to the lungs; In our baby girls heart, the arteries are switched, the larger ventricle pumps to the lungs and the smaller ventricle pumps to the body. There can be complications with this in regards to too much pressure to the lungs and in the arteries there, the smaller ventricle having to work too hard and not adapting well, as well as some other things. They don't usually do surgery for this type of defect, it could come to that as well as heart failure and needing a heart transplant, but for the most part a lot of it can be helped with different medications and such.
Her other diagnosis because of the CCTGA is a problem with the electrical pathways not triggering properly which causes arrhythmias and can potentially cause heart block in which case a pacemaker would be necessary.
My understanding of what the doctor told us. There is a very good prognosis. Some people don't even know that they have this and have lived long normal lives. There would be monitoring and watching over the years. As long as her body and heart are able to adapt to the different pressures and function well, she should be able to do whatever she wants to. He talked like it would be over time (several years) before we would have to treat anything, of course that would depend on how she did right after birth and such I would think. If she adjusted well and seemed to do okay we would just monitor and it would either stay the same or be a gradual decline. He said if her heart starts to have problems it would be a gradual thing, not sudden. At this point I think that is all that's wrong with her. He did not mention any other heart abnormalities or anything that could go along with this. We are going back in two weeks for another ultrasound, so hopefully everything will be clear and there will be a definite there's nothing else wrong.
It's been a lot to process and figure out, but I think we're doing ok. God is good all the time. It's not just a saying it's truth. He has a plan and a purpose in it all and we firmly believe that. I hope and pray that it's not His plan to take our baby girl to Heaven soon, but if it is I know He'll give us the grace and strength to deal with that as well. I puzzle over trying to find the balance between being hopeful and having faith that she will be well and healthy, yet being realistic, yet not worrying.
Here are some links I found helpful that explain it fairly well:
http://www.chop.edu/service/cardiac-center/heart-conditions/congenitally-corrected-transposition-of-the-great-arteries.html
http://www.achaheart.org/resources/for-patients/health-information/cctga.aspx
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