I have added a name poll to the blog - on the far right side of the screen. We are anxious to choose a name for this little one, so we can stop calling him Baby Maddox #3. Please vote your favorite - it is anonymous - don't worry! We may add to the poll if we come up with any more names. We also welcome any suggestions - just send it to us or post in the comment box below.
Our top 3 names right now are Silas, Sawyer and Smith. We are still undecided on middle names, so vote for just the first name that you like best.
Silas is a biblical name (yes, there is also a Silas on the show "Duck Dynasty" - Uncle Sy) that means "the third". We like the middle name "Asher" because it means "blessed or blessing". So this name together means "the third blessing" - pretty appropriate for our family, right?
Sawyer is a name we have always liked. It is a leftover from when we deciding on a name for Sutton...Sawyer was a close second and we still like it!
Smith is just a name that we both like. Yes, the idea for the name technically came from the character from the "Sex in the City" series/movie "Smith Jarret" - but we like it paired with the middle name Asher.
Monday, January 28, 2013
OB Appointment Update
On Friday we met with a new OB (Dr. Rachael Kurian) at the practice I have been going to. She was really great - knowledgeable, easy to talk to, honest, and with just enough spunk/personality. She is a high risk OB and agreed to take us on as a patient and be our primary OB from here forward.
My blood pressure was much better (112) and I have gained a few more pounds (never thought I would be happy to say that!). She found the baby's heartbeat right away and it sounded great (in the 140's and 150's).
Of course we had a ton of questions - most of which just cannot be answered right now - and we did discuss the results of the last sonogram. She had a copy of the report and said that she is constantly in contact with Dr. McGee (our doctor at the specialists office who did the first sonogram) and she also knows the doctor who will be doing the echo on Friday. They will all be in close contact from here forward.
Going forward she presumes that Dr. McGee will start doing more testing to rule out other possibilities like a viral issue. There are many more tests that can and probably will be done, but we have to be prepared for the fact that there may not be answers yet and we may have to wait until the baby is born to know anything for sure. Hopefully the echo and the Level II sonogram this Friday will help to give us a better picture of the magnitude of the issues with the heart, intestines, etc. and what, if anything, can be done to help correct them.
She also said that the pregnancy is considered "viable" at 24 weeks, meaning that the baby could survive if born that early. And at that point (just 2-3 weeks away), they will be on that baby like "white on rice" (her words...see what I mean about spunk?) with weekly sonograms, check-ups, etc.
The last tidbit of information we learned is that the baby measured around 12.5% smaller than he should have. Anything over 10% is usually something that they take note of. The original due date (which I know is right) should be June 8th, however because the size of the baby on the very first sonogram I had before we knew anything could be wrong (around 8 weeks) was measuring small, I think they changed the due date to a week later. So I believe his 12.5% measurements were based on the wrong due date and the baby might be even a little smaller. Another question to ask on Friday!
My blood pressure was much better (112) and I have gained a few more pounds (never thought I would be happy to say that!). She found the baby's heartbeat right away and it sounded great (in the 140's and 150's).
Of course we had a ton of questions - most of which just cannot be answered right now - and we did discuss the results of the last sonogram. She had a copy of the report and said that she is constantly in contact with Dr. McGee (our doctor at the specialists office who did the first sonogram) and she also knows the doctor who will be doing the echo on Friday. They will all be in close contact from here forward.
Going forward she presumes that Dr. McGee will start doing more testing to rule out other possibilities like a viral issue. There are many more tests that can and probably will be done, but we have to be prepared for the fact that there may not be answers yet and we may have to wait until the baby is born to know anything for sure. Hopefully the echo and the Level II sonogram this Friday will help to give us a better picture of the magnitude of the issues with the heart, intestines, etc. and what, if anything, can be done to help correct them.
She also said that the pregnancy is considered "viable" at 24 weeks, meaning that the baby could survive if born that early. And at that point (just 2-3 weeks away), they will be on that baby like "white on rice" (her words...see what I mean about spunk?) with weekly sonograms, check-ups, etc.
The last tidbit of information we learned is that the baby measured around 12.5% smaller than he should have. Anything over 10% is usually something that they take note of. The original due date (which I know is right) should be June 8th, however because the size of the baby on the very first sonogram I had before we knew anything could be wrong (around 8 weeks) was measuring small, I think they changed the due date to a week later. So I believe his 12.5% measurements were based on the wrong due date and the baby might be even a little smaller. Another question to ask on Friday!
Saturday, January 26, 2013
Friday, January 25, 2013
A Little Humor
Our kids love to take pictures with our phones. Samantha was taking pictures of "the baby" earlier this week, and Sutton (who usually just wants to be exactly like his Daddy) proclaimed "Take a picture of my baby!" - so Samantha got the following shot of his belly as well. He also put his hands on my belly that night and very sweetly asked "How is the itty bitty baby doing?" - these kids melt my heart daily and always keep me laughing.
The first "belly shot" I have taken - courtesy of Samantha (at 21 Weeks)
Silly Sutton showing off his belly
We Just Got the Rest of the Amnio Results
The nurse from the specialists office just called to let us know that they got the rest of the amnio results that we were waiting on. Everything is negative!! That is more great news for now!
What does that mean? According to my research it means "your baby is free from chromosomal abnormalities and other birth defects that the test is designed to identify. However, 'normal' results, while desirable, do not guarantee that your baby will be 100% healthy. Amniocentesis results do not reflect non chromosomal abnormalities including certain types of mental retardation, heart defects, or other conditions."
It could still be anything - a defect, a syndrome, a virus, etc. Or it could be something that we can't test for and won't know until after the baby is born. Or it could just be a problem with the baby's health. We just don't know. We know for sure that the blood screening came back at high levels for certain proteins and that the first sonogram identified some problems, most concerning to us - the heart. But for now I will rejoice in the fact that all chromosomal issues have been ruled out - as chromosomal problems are unfortunately incurable.
We are so thankful for the support and prayers of so many people - many who we don't even know! I truly believe that while the medical appointments and treatments are important - prayers are far more powerful.
What does that mean? According to my research it means "your baby is free from chromosomal abnormalities and other birth defects that the test is designed to identify. However, 'normal' results, while desirable, do not guarantee that your baby will be 100% healthy. Amniocentesis results do not reflect non chromosomal abnormalities including certain types of mental retardation, heart defects, or other conditions."
It could still be anything - a defect, a syndrome, a virus, etc. Or it could be something that we can't test for and won't know until after the baby is born. Or it could just be a problem with the baby's health. We just don't know. We know for sure that the blood screening came back at high levels for certain proteins and that the first sonogram identified some problems, most concerning to us - the heart. But for now I will rejoice in the fact that all chromosomal issues have been ruled out - as chromosomal problems are unfortunately incurable.
We are so thankful for the support and prayers of so many people - many who we don't even know! I truly believe that while the medical appointments and treatments are important - prayers are far more powerful.
Thursday, January 24, 2013
New Appointments Scheduled
I spoke with my OB's office yesterday, and while we are still waiting on the testing results and not sure what they will bring, we discussed our plan of action going forward. I have been seeing the midwives at an OB practice in Dallas. However now that this is considered a "high risk" pregnancy, I will probably need to switch to an OB with high risk experience. They do have several on staff at their practice, and I will meet with one of them this Friday. I don't know what we will do at that appointment since we are still not sure what is going one, but even if we only get to hear the heartbeat and get the reassurance that this baby is still holding on - that is enough for me!
Going forward, I will alternate care between the specialists office and my OB's office. They are in close contact with each other and will share any updates with each other.
I also have another appointment set up at the specialists office for next Friday, Feb. 1st. We will first see a pediatric cardiologist and do an "echo" on the baby's heart to further explore that issue. Then we will do another Level II Ultrasound to look over everything again. Stuart and I have tons of questions to ask and we are hoping to get at least some of them answered.
In the meantime, we are still waiting on the rest of the amnio results - depending on what that brings, it will determine what else needs to be done going forward (further testing, special care, etc.).
Going forward, I will alternate care between the specialists office and my OB's office. They are in close contact with each other and will share any updates with each other.
I also have another appointment set up at the specialists office for next Friday, Feb. 1st. We will first see a pediatric cardiologist and do an "echo" on the baby's heart to further explore that issue. Then we will do another Level II Ultrasound to look over everything again. Stuart and I have tons of questions to ask and we are hoping to get at least some of them answered.
In the meantime, we are still waiting on the rest of the amnio results - depending on what that brings, it will determine what else needs to be done going forward (further testing, special care, etc.).
Tuesday, January 22, 2013
The Initial Results
On Monday, I got a call from the specialists office with the "Rapid Results" back. Apparently just the "Rapid Results" come back in three days - the results for Downs, Tri 18 and Tri 13. To my surprise, she said they all came back negative. But they still had to look at the other 46 chromosomes and this will take up to 10 days.
I called Stuart right away to let him know and to help me process what this means. We were so prepared for Tri 18, that it came as a shock that it was negative for Tri AND Downs. I told him I didn't know if that was good news and he said that it was - for now and that it is okay to have hope. But we are also being very realistic. We also found out the gender of the baby, but decided to wait to share that with anyone until we told the kids - maybe even after the rest of the results come back.
The doctor did say that while he was leaning towards Tri or severe Downs, that it could be anything: a syndrome that we can't test for, a virus or sickness like toxoplasmosis. It could also be one of MANY other chromosomal disorders, just ones that are not as common as what he was looking for.
We have a ton of questions running through our minds and I am very impatiently waiting on the rest of the results. I keep thinking - there has to be something we can do now. What if this baby needs help and we are wasting time? Is there something I should be doing - diet, exercise, bed rest....anything?? I know that we will just be told we need to wait on the rest of the results, but what if they are all negative and it is not a chromosomal issue? Then we will have to wait on further testing and explore so many more options. There is nothing worse than the feeling of helplessness when it comes to your children.
So here we are, back to waiting with every possible thought and scenario running through our heads. In the meantime, we have so many people praying for us that we have a glimmer of hope for a miracle. I know that the baby is still okay because I do sporadically feel him/her move and that gets me through each day.
I called Stuart right away to let him know and to help me process what this means. We were so prepared for Tri 18, that it came as a shock that it was negative for Tri AND Downs. I told him I didn't know if that was good news and he said that it was - for now and that it is okay to have hope. But we are also being very realistic. We also found out the gender of the baby, but decided to wait to share that with anyone until we told the kids - maybe even after the rest of the results come back.
The doctor did say that while he was leaning towards Tri or severe Downs, that it could be anything: a syndrome that we can't test for, a virus or sickness like toxoplasmosis. It could also be one of MANY other chromosomal disorders, just ones that are not as common as what he was looking for.
We have a ton of questions running through our minds and I am very impatiently waiting on the rest of the results. I keep thinking - there has to be something we can do now. What if this baby needs help and we are wasting time? Is there something I should be doing - diet, exercise, bed rest....anything?? I know that we will just be told we need to wait on the rest of the results, but what if they are all negative and it is not a chromosomal issue? Then we will have to wait on further testing and explore so many more options. There is nothing worse than the feeling of helplessness when it comes to your children.
So here we are, back to waiting with every possible thought and scenario running through our heads. In the meantime, we have so many people praying for us that we have a glimmer of hope for a miracle. I know that the baby is still okay because I do sporadically feel him/her move and that gets me through each day.
Waiting on the Results
The 3 days spent waiting for the results seemed like a bad dream. I thought back to all of the signs that something was wrong. I knew that this pregnancy felt different. I was very sick (not unusual for my pregnancies) but for much longer. I was also still so exhausted. That is normal in the first trimester, but I was supposed to be in my glorious second trimester where I had my energy back and was feeling good. I have not been able to breathe well and I get out of breath at the slightest exertion. That is fairly normal later in my pregnancies when I get much bigger, but at this point I had only gained 4 pounds - another "not normal" for me. As soon as the really bad nausea subsided a little, the heartburn/indigestion/reflux started and has been running rampant ever since. ANYTHING flairs it up - even water! I started taking Zantac 150, but it still did not do the trick. My OB said that I could take 2 of those a day and to take them consistently. Even that does not cure it - maybe it is something else? And lastly (and most alarming to me) - I have not been feeling the baby move like I knew I should. By this point in my other two pregnancies I could feel the baby move and move often. This one is very sporadic - if at all. When I mentioned it to the OB at my 18 week check-up, she mentioned that it could just be the placement of the placenta and didn't explore my concerns further, even though I mentioned that I felt like something could be wrong.
I am sure that doctors get paranoid patients all of the time. I am far from paranoid or dramatic, but I had been feeling like there was something off for a while. I even told my Mom and Sister the previous month that I felt like something was very different - wrong even. But I tried to shake the feeling and did not even mention it to Stuart because I did not want to worry him unnecessarily. Looking back, I think that my intuition was God's way of starting to prepare me for what lay ahead.
After the sonogram, I didn't want to talk to anybody. I still wasn't even clear on a lot of things at that point because the appointment was a blur. We had several family members and close friends waiting on news and also waiting to find out gender. My wonderful husband made all of those calls and explained what we knew. I will never forget how amazing he was through this. He was strong during the sono and after so that I could be a wreck. He went through the hard part of informing our loved ones about what was going on. And he spent the next 3 days letting me curl up in bed in misery, took care of the kids, and explained things to me as many times as I needed him to.
During that period of waiting for the results I did a lot of research on Tri 18. I learned that the disorder was "incompatible with life" 95% of the time. Any babies that made it to full term were born stillborn - if they made it that long. There were a handful of cases where the child lived, but always with severe problems and rarely past childhood. If this is what we were dealing with, I knew that there were lots of tough decisions ahead and we prepared for the worst.
I am sure that doctors get paranoid patients all of the time. I am far from paranoid or dramatic, but I had been feeling like there was something off for a while. I even told my Mom and Sister the previous month that I felt like something was very different - wrong even. But I tried to shake the feeling and did not even mention it to Stuart because I did not want to worry him unnecessarily. Looking back, I think that my intuition was God's way of starting to prepare me for what lay ahead.
After the sonogram, I didn't want to talk to anybody. I still wasn't even clear on a lot of things at that point because the appointment was a blur. We had several family members and close friends waiting on news and also waiting to find out gender. My wonderful husband made all of those calls and explained what we knew. I will never forget how amazing he was through this. He was strong during the sono and after so that I could be a wreck. He went through the hard part of informing our loved ones about what was going on. And he spent the next 3 days letting me curl up in bed in misery, took care of the kids, and explained things to me as many times as I needed him to.
During that period of waiting for the results I did a lot of research on Tri 18. I learned that the disorder was "incompatible with life" 95% of the time. Any babies that made it to full term were born stillborn - if they made it that long. There were a handful of cases where the child lived, but always with severe problems and rarely past childhood. If this is what we were dealing with, I knew that there were lots of tough decisions ahead and we prepared for the worst.
The Appointment - Genetic Counseling & Sonogram
On Friday, January 18th (week 20) we went in for our scheduled appointment. First was the genetic counseling session where we went through extensive family history and both answered a million questions. The counselor briefly explained about chromosomal disorders and how they occur, and we discussed Downs, Trisomy 18 and Trisomy 13. She explained that based on my age (34) I already had a 1/348 chance of having a baby with Downs. Based on my blood screens, our chances to have a Downs baby was 1 in 10. Part of the blood screen is that they measure certain levels of protein in the blood. I believe she said it was normal for the protein levels to be at a 1 or under. My HCG levels came back around a 2.5, and another protein came back at over a 3 - thus putting me in the "increased risk" category.
Once we finished that session, they took my blood pressure (for the first time ever it was high - in the 130's), but we chalked it up to anxiety. We went back to the sonogram room where we met the doctor and nurse. They asked if we wanted to know the gender of the baby and we both replied yes! Then the doctor said "Let's find a healthy baby" and started the sono.
The first thing I remember is him saying that the baby is in a breech position.
Then, within what seemed like seconds (though it was probably a couple of minutes), he said "I have seen some things that concern me."
At that point, I think I replied "Already?" and then I pretty much lost it. The very sweet nurse saw me welling up and brought over tissues and stood over me (almost protectively) while she stroked my hair. I think all this happened before Stuart even realized it - he was so focused on listening to the doctor and definitely not used to me being emotional. He grabbed my hand and did not let go for the rest of the appointment.
The rest is kind of a blur, but I know he started going through the list of things that he had found. Not just one thing - but a list! I knew from my research that the "markers" of Downs that they would look for included things like a fold in the flap of the neck and short limbs, but none of what he started to describe did I remember coming across in my research.
What they found:
1. The baby was very small (not in line with the due date)
2. The femur measured short
3. There was a sac of fluid in the abdomen
4. The intestines were "bright" - a sign that something is wrong with them
5. The heart was enlarged and had fluid buildup around it
As I mentioned, it was all a blur when he was going through those issues, but I snapped out of it when he said "I am concerned about the health of this baby." and "I am worried about this baby."
At that point I realized that he wasn't even just talking about Downs anymore - this was much more serious. I asked what could be wrong if it wasn't Downs. He thought that it could be a severe form of Downs, but he was leaning towards Trisomy 18 - a chromosomal disorder that is "incompatible with life."
We were given two testing options to find out for sure: an amniocentesis or a newer procedure - a blood test. We went in thinking we would never do an amnio as there is a risk for miscarriage, but after thought and discussion, we decided that was our best hope for a diagnosis. We knew that the baby had serious complications and we wanted the best possible chance of an accurate diagnosis, so we could start to prepare to help the baby in any way possible.
The nurse told us that they had never had a miscarriage after an amnio, which helped lessen the fear we had. It was quick and relatively painless and we got to watch the procedure on the screen. He stuck a small needle through my belly, just enough to penetrate the sac, and withdrew a large syringe full of amniotic fluid. He explained that the tiny hole that was made in the sac usually seals right back up. If for some reason it does not, that is what causes the water to break and causes the miscarriage. I had to rest for the next 3 days and not lift anything over 5 pounds.
We were told that we would have the results in 3 days - by Tuesday afternoon, so all we could do was go home and wait. As we were leaving we asked the nurse if we could find out the gender of the baby (that thought had left our minds as soon as we found out that something was wrong) and she said that the doctor was not able to tell - probably due to the fluid in the abdomen causing it to swell/distend, but the amnio would tell us that as well.
Once we finished that session, they took my blood pressure (for the first time ever it was high - in the 130's), but we chalked it up to anxiety. We went back to the sonogram room where we met the doctor and nurse. They asked if we wanted to know the gender of the baby and we both replied yes! Then the doctor said "Let's find a healthy baby" and started the sono.
The first thing I remember is him saying that the baby is in a breech position.
Then, within what seemed like seconds (though it was probably a couple of minutes), he said "I have seen some things that concern me."
At that point, I think I replied "Already?" and then I pretty much lost it. The very sweet nurse saw me welling up and brought over tissues and stood over me (almost protectively) while she stroked my hair. I think all this happened before Stuart even realized it - he was so focused on listening to the doctor and definitely not used to me being emotional. He grabbed my hand and did not let go for the rest of the appointment.
The rest is kind of a blur, but I know he started going through the list of things that he had found. Not just one thing - but a list! I knew from my research that the "markers" of Downs that they would look for included things like a fold in the flap of the neck and short limbs, but none of what he started to describe did I remember coming across in my research.
What they found:
1. The baby was very small (not in line with the due date)
2. The femur measured short
3. There was a sac of fluid in the abdomen
4. The intestines were "bright" - a sign that something is wrong with them
5. The heart was enlarged and had fluid buildup around it
As I mentioned, it was all a blur when he was going through those issues, but I snapped out of it when he said "I am concerned about the health of this baby." and "I am worried about this baby."
At that point I realized that he wasn't even just talking about Downs anymore - this was much more serious. I asked what could be wrong if it wasn't Downs. He thought that it could be a severe form of Downs, but he was leaning towards Trisomy 18 - a chromosomal disorder that is "incompatible with life."
We were given two testing options to find out for sure: an amniocentesis or a newer procedure - a blood test. We went in thinking we would never do an amnio as there is a risk for miscarriage, but after thought and discussion, we decided that was our best hope for a diagnosis. We knew that the baby had serious complications and we wanted the best possible chance of an accurate diagnosis, so we could start to prepare to help the baby in any way possible.
The nurse told us that they had never had a miscarriage after an amnio, which helped lessen the fear we had. It was quick and relatively painless and we got to watch the procedure on the screen. He stuck a small needle through my belly, just enough to penetrate the sac, and withdrew a large syringe full of amniotic fluid. He explained that the tiny hole that was made in the sac usually seals right back up. If for some reason it does not, that is what causes the water to break and causes the miscarriage. I had to rest for the next 3 days and not lift anything over 5 pounds.
We were told that we would have the results in 3 days - by Tuesday afternoon, so all we could do was go home and wait. As we were leaving we asked the nurse if we could find out the gender of the baby (that thought had left our minds as soon as we found out that something was wrong) and she said that the doctor was not able to tell - probably due to the fluid in the abdomen causing it to swell/distend, but the amnio would tell us that as well.
Back to the Beginning
At my regular OB check-up on January 3rd (week 18), I decided to go ahead and do the 2nd trimester blood screening test. They took one vial of blood and said that they would call me with the results and I didn't think much more about it. The next week (week 19) they called to let me know that my screens came back at an "increased risk" for Down Syndrome and referred me to a genetic screening specialist at Baylor Hospital. She said that the results were calculated based on my age, the gestational age of the baby, protein levels and some other factors. The only other information they could give me was that my risk factor was 1/348 and my MMS was 1/10.
I called the Fetal Care Center at Baylor Hospital and took the first available appointment for the following week. In the meantime, I did lots of Internet research and learned that the screening tests can be very unreliable, there are lots of false positives, and that most of the time it is nothing at all. I knew that they would do a Level II ultrasound and look for "markers" of Down Syndrome, then we would go from there. We were also looking forward to finding out the gender of the baby during the sonogram. Stuart and I tried not to worry about the screen results and we were just looking forward to a detailed sonogram of our baby and finding out whether we were having another boy or girl!
I called the Fetal Care Center at Baylor Hospital and took the first available appointment for the following week. In the meantime, I did lots of Internet research and learned that the screening tests can be very unreliable, there are lots of false positives, and that most of the time it is nothing at all. I knew that they would do a Level II ultrasound and look for "markers" of Down Syndrome, then we would go from there. We were also looking forward to finding out the gender of the baby during the sonogram. Stuart and I tried not to worry about the screen results and we were just looking forward to a detailed sonogram of our baby and finding out whether we were having another boy or girl!
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